Weaning Off Mirapex

I’ve recently decided to stop taking Mirapex (Pramipexole) for my Restless Less Syndrome (RLS). I plan to wean myself off of it for various reasons. I’ve heard this process can be quite horrible. Note: I am not a doctor. Do not proceed with any of the advice listed on this blog post or in the comments until you have talked to your doctor.

Post update – read through the entire blog post and comments. Readers have updated us on their weaning efforts.

Mirapex has  – caused me to gain weight, is the type of drug in which the more you take, the more you’ll need, is really expensive even in generic format, and can lead to icky side effects leading to compulsive disorders such as gambling or sexual addiction and other odd behaviors.

Last month I paid about $125 for my monthly Rx. Yuck. One of my sisters recently reached her max dose of pramipexole and was told by her doctor that she couldn’t increase it.

No thanks. Let’s just jump off this wagon before I’m too far down the road.

I plan to wean myself off the RLS medication slowly, very slowly. I currently take one dose of .375 mg a couple hours before bed. I will decrease my dosage by 1/4 pill and take that amount for seven days. I’ll then decrease it by another 1/4 tablet for seven days, etc. I predict it will take me over a month to wean off Mirapex. That is IF I can tolerate being without the medication. I have moderate RLS. I do not get jumpy legs during the day – luckily. It is only at night.

toes

Many times people who have tried to stop taking RLS meds fail due to: awful rebound, depression, anxiety, etc. One person stated online “It is one of the most brutal events I’ve gone through in my life.”

Great. And doctors continue to prescribe this??!

I plan to try some or all of the following to help me wean off. I also hope that life after Mirapex will be somewhat tolerable. I do not want to replace this med with Requip, Sinemet or any other Rx.

** Have you stopped taking prescription medication for Parkinson’s or Restless Leg Syndrome? What natural remedies have you tried (that worked)?

I will…

1. Cut down on sugar and caffeine. If I can eventually give these up all together I will.

2. Try to exercise at least 30 minutes a day. (Be careful not to overdue the exercise – I feel there is a tipping point in which too much activity can aggravate you muscles and legs.)

3. I will avoid Viactiv vitamin supplements - holy crap, those things make my RLS go off the charts.

Note: if you are taking SSRI antidepressants these can make your RLS worse. Google it, read up on the kinds that are involved.

4. I will take a slow release iron supplement. (Again, see your doctor, too much iron can kill you.)

5. In the evening I will eat foods that increase dopamine levels. These include: almonds, avocados, and bananas. These aren’t necessarily the best on the list – you can see lots of good options and info HERE. A reduced amount of dopamine is thought to be one of the causes of RLS.

6. I will investigate sleeping with my legs raised.

7. At night I will make sure my skin is not dry and itchy. This can lead to twitches. Once they start… you’re sunk. There are various anti-itch or itch relief lotions out there. I will give them a try.

8. Wear tight leggings to bed. Some people use ace bandages.

9. Have ice packs and heating pads available in case I need them. Temperature changes are said to help relieve episodes.

10. Get up and walk around, massage my legs or convince the hubby to help with that. :-)

11. Avoid using antihistamines such as Benadryl, contact or a sleep aid or cold remedy. These pills make me sleepy, but also make my RLS worse.

12. Try to find a doctor in my area who knows about this syndrome and seek his/her advice.

13. Investigate Iron Infusion therapy. Some people feel RLS may be caused by decreased iron levels. Some researchers have found that normal blood tests do not indicate an issue – things are fall into a normal range – but post mortem autopsies on RLS sufferers have shown that there is an issue. I’ve read that the iron supplements may not work for severe cases and an IV infusion is needed. I think more research needs to be done on this. I hereby donate my body to science in the name of RLS research… once I’m dead.

14. I’ve heard one of the withdrawal symptoms of Mirapex is anxiety. I will purchase some lavender and chamomile aromatherapy to help combat this.

Is there life after Mirapex? Can I do this? I have no idea. To tell you the truth I’m very nervous. I feel like an addict facing heroin rehab.

I will update this blog post over time and check in.

Wish me luck.

My Experience

Update – I tried to wean myself after this initial blog post and gave up. it was just too hard. The RLS was too bad at night.

Update 7/17/2012: I’m trying to wean myself again! I can do this. Positive attitude.

Current dosage = .25 a couple hours before bed. This is 1/3 my prescribed dose.  Actions = vitamins (Calcium/Magnesium/Zinc and slow release iron) right before bed, exercise, no caffeine after 11:00 a.m., and eating food to increase dopamine levels in the brain. Just after lunch I am taking a B-Complex, C, and D vitamin.  Results = Sleep has been fine, a little more twitching in the night, but not too bad. I think I am more crabby and irritable during the day. I hope this will go away.  Plan = I will stay at this dose for a few more days then drop it down again. I will also stay with the diet and supplement routine and try to increase my exercise.

Update 7/25/12 – I am now taking only 1/2 of my prescribed dose. My legs get jumpy between 7 – 8:00 pm and then again starting around 4:30 or 5:00 am. Taking the C, B-Complex, and D vitamins during that day has really helped my mood. Body aches are going away AND I can stay up later – no more falling asleep an hour after taking my meds. Whew. That’s a nice perk. I haven’t noticed any change in my weight or appetite though. Next step is to cut the dose more. Wish me luck.

Update 7/28/12  – I am now down to only .125 at night. I’ve had a few rough nights of only 4 to 5 hours of sleep. My legs and arms are very twitchy – worse then before I started taking the meds. About the third or fourth night of this lower dose, I was able to sleep for 7 to 8 hours. Not a great sleep. Very odd dreams, etc. But I slept.

Do not take a cross country road trip while trying to wean off Mirapex. Bad idea.

Update 8/1/12 – I did not have any Mirapex last night and let me tell you – that was the worst night of RLS in my life. Severe jerking in my legs that got progressively worse as the night went on. Nothing helped – ice, icy hot, magnesium, valerian root… nothing. I’m pretty sure it is from me coming down off the meds. I hope that after a few hellish nights of this that I will start to see a turn for the better.

I have no idea if weaning helped me. I can’t see that stopping cold turkey could have been any worse.

I’ve heard good things about magnesium citrate (not oxide) and RLS – that it will lessen the bouts, not cure it, but take away some of the intensity. I bought some today.

Update 8/3/12FAIL.

I couldn’t handle it anymore and took some of my Mirapex last night. It had been three nights of very little sleep and increasing legs jerking and movement. Last night they were happening every four seconds and quite strong. They also came on a few hours earlier than previous nights med free. I was very tempted to take some old Oxycodone in our cupboard and decided that wasn’t a smart move. UGH. I opted for the Mirapex.

So today I will be digging for a doctor in my area familiar with RLS. I still want to get off this medicine.

Post Update 2/16/13 – I am still taking Mirapex. I need .375 a night in order to sleep. I’ve decided to wait until the medical community figures out how terrible this medication is. Once they do that, hopefully they will find a way to help people get off of it.

Here is a great Facebook page – lots of support and information. RLS Foundation

If you want to freak yourself out, read this article – Reducing Dosage of Parkinson’s Drugs Can Cause Symptoms Similar to Those of Cocaine Withdrawal Fan.Tas.Tic.

For those of you following my attempt to wean, a couple things to note: I never had issues with RLS during the day or in my arms and the only Rx med I’ve taken is Mirapex. I haven’t tried any of the others. After the issues I had with Mirapex, I won’t try any other Rx meds for this syndrome.

~ Jenna

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237 Responses to Weaning Off Mirapex

  1. avatar Donna says:

    It sounds like you have a good plan mapped out. Does RLS cause you any pain? Or is it mainly your legs jumping around?

    • avatar JAScribbles says:

      Legs and arms get very jumpy, itchy, crawly. I think some people will go into painful cramping. It isn’t fun. I hear the withdrawal is bad because of mental issues – depression, bad anxiety, panic attacks…. great.

      So far so good at the lower dose. :-) I haven’t found a doctor yet to help me wean off. I’m looking.

      ~ Jenna

  2. avatar Razz says:

    Ive had restless leg syndrome for years, Ive recently found a homopathic pill that is a miracle for me, Im now down to 1/4 mirapex in the morning, I have had restless leg since cutting down but i take two of these pills and it takes it away with in 30 minutes of takeing them, you put them under your tongue to dissolve. They sell them at Walgreens and Sweetbay grocerers, Im sure they sell them other places I just havent looked. They are called Restful Legs there are 50 tablets in a bottle and you can take up to 3 to 4 at once under your tongue, both my mom and myself started taking two and thats all we needed for it to go fully away. you’ll see a little blue emblem on the box that says Hyland’s they are FABULOUS!

    While on Mirapex I also started buying scratch tickets and couldnt stop, My friend had looked it up on the internet and only then did i discover that this drug has addictive side effects for compulsive gambling, I lost so much money while on this drug, I wish I would of known before I started taking this drug and my Dr. or pharmacist would of warned me, which they hadnt!
    For all you people going off Mirapex please try this homopathic product, Its only aproximatley $7.00 for 50 pills and its a lot safer with NO side effects.

    Im getting off all the pills Ive been prescribed in the past now, after reading and educating myself. I dont trust the pharmacutical companies whatsoever anymore. I will be going strictly homopathic from now on, unless for emergencys where I need medicines that could save my life in any instance.
    good luck all, give Restful Legs (homopathic) a try you wont regret it! It works Great!
    Thanks

    • avatar JAScribbles says:

      Sorry about your gambling issues while on Mirapex. My pharmacist and doctor also failed to mention these things to me, but it was written quite clearly on the Rx packaging I received. I also always research medicine I am about to start and saw it online. Along with sexual related issues.

      The side affects I wasn’t prepared for were – weight gain, hair loss and neck aches.

      I’ve tried the over the counter meds you refer to above – unfortunately they had zero benefit for me.

      They may help other people so thanks for bringing this up. Maybe once I’m weaned from Mirapex the herbal remedy will have more affect.

      I’m still on Mirapex – still hoping to get off of it.

      • avatar franklin fernandez says:

        I can’t believe I am writting this. A long time ago I tried to reduce the amount and it did not work. My RLS started when I was a kid. 55 now, It was bad not as bad after I started meriplex then I had it in my arms as well as my legs. Then I started to fall alseep during the day. Well my cure to stop is not legal but it worked so far. Here it is now this is just information not a recommendation. I came across this by mistake. After shoulder surgery I found that hydrocodone took the edge away. Then one night with friends over someone lit a joint and stupid me took a drag well I be damed I slept like a baby, so I got a hold of some weed and Hydros and tried it out to see what would happen. No issues with legs or arms. Then I decided to see if I could stop. well its been 7 days now can’t say I dont get a senation here or there but as the days have gone by its less and less. I will post again in 7 days and let you know if I was successfull or not. I also wanted to stop it seemed that what used to be from time to time became a every night thing after the miraplex and ten times worse then I ever had it before. I was on the meds for two years and it seem to get worse not better. I am glad to hear that others are feeling it in there arms as well I never understood why but I guess I am not alone. To the RLS reading this I wish you the best for only people with RLS understand the feeling one gets. driving is no fun when its acting up. best of luck to all.

  3. avatar Babs says:

    I am going through the weaning process, too, and am writing right now due to the inability to lie still… I’m trying to accept the process and not get too discouraged. Last night, I gave in and took one Mirapex at 2:30 AM. Even now, as I type, my arms are sooo uncomfortable and “itchy” inside.

    I regret ever starting this med, though it did give me many years of good sleep, it also caused me to shop online obsessively and overspend, not to mention weight gain and frequent urination every night.

    I’d love to know how you’re doing now, Jenna?!?

    I, too, have rid my diet of caffeine and sugar and am getting moderate exercise every day.

    • avatar JAScribbles says:

      Hi Babs – thanks for stopping. I was able to cut down my dosage a little but ended up bumping it back up to the normal level. I had weird panic and anxiety issues. UGH. I need to find a doctor to help me wean off this crap. Trouble is, our health insurance is really bad and we basically pay cash for everything – including $107 per month for the Mirapex. That’s what I pay!! Ugh again. A doctors visit to a specialist will be in the hundreds.

      Please stop back and give us updates. What dosage are you at? Try some if the diet items I mention above – almonds, bananas, etc.

      Jenna

  4. avatar Lynn says:

    I’ve had RLS for 10+ years & I’ve been on Mirapex for about 5. At first it was a blessing, and I’m now finding out it is the exact opposite. I got to my max dose of 1mg that my body could handle in the evening and when I took more I would be so dizzy in the AM that I couldn’t get out of bed. Then the symptoms started to show up midday. So I took more, then I had to increase that dose just to sit at my desk without crawling out of my skin. I too have gained a lot of weight due to compulsive eating. I’ve also had some issues with shopping even though I am very thifty ;)

    I’ve been trying to wean myself off Mirapex and to start taking Requip, but it has been AWFUL!!! My sleep specialist has me taking iron and vitamin C, but it doesn’t seem to do anything. One weird thing I noticed within 1-2 days of me stopping the midday Mirapex dose was numbness in my right leg & foot. Let me say that I’ve had back problems for 15+ years, but I think Mirapex was masking nerve problems in my back. So now I not only have to deal with weaning off this horrific drug, but I have to seek treatment for back pain & leg numbness. I really think that my back problems are making the RLS symptoms worse and so does my chiropractor.

    Three days ago I took my last midday Mirapex pill (I’m still taking the Requip at night) and I’ve tried to do this several times. For some reason when I don’t take it midday, but I still take Requip at night I wake up around 2am with horrible symptoms. Have you ever experienced this?

    I wish you the best, Jenna! I am so thankful that I found your website. I now know I am not alone :)

    • avatar JAScribbles says:

      Hi Lynn – sorry to hear about your RLS troubles. It really stinks. I am still taking the medicine but haven’t needed to increase my dosage or take it during the day. I take .4 a couple hours before bedtime.

      I used to have a touch of middle-of-the-night insomnia as well from the RLS meds. it’s weird. Although I just woke up and didn’t have leg twitches. Oh and the weight gain – yikes. Yes I’m older these days but I’m sure the Mirapex has caused me to gain some weight. When I first started Mirapex I had moderate neck pain. So I can understand you are experiencing the back pain.

      My plan is to try a new doctor and ask her to research weaning off the RLS drugs. My old doctor was kind of a dunce so I’m moving on to someone new. I’d rather not switch to Requip or the newer one, Horizant because I have no idea if they are any different or better. Why switch to a new monster?

      Try calcium supplements. If you are taking antidepressants be mindful that these can cause RLS to worsen.

      I also find that certain foods make my RLS go off the charts – coffee in the evening, alcohol, cinamon and sugar treats, and any kind of queso or chili dip. SO WEIRD! But hey, if I can skip those and keep my legs a little calmer, I will skip those foods!

      Good luck Lynn. Stay in touch.

      ~ Jenna

  5. avatar Janet says:

    Thanks for the comments. I have been on .25 of mirapex for several years as well as a very small dosage of Prozac. Recently I found doTERRA essential oils and I believe with their strong therapeautic properties I will be able to go off all my medications including my bio-identical hormones. I am down to every other day for the Prozac and have been fine and 2 nights ago tried to sleep without any mirapex — well that didn’t work too well so got up at 1 or so and took my normal dosage. Then I read up on mirapex and last night cut my 1/2 pill in 1/2 again and was able to sleep pretty well. Yea!! I think the oils have helped tremendously with the RLS but that I’ve become dependent on the mirapex for getting to sleep even without RLS. Luckily I haven’t ever taken more than .25 so haven’t had the radical impulses that I’ve just learned about can be caused by Mirapex – horrid!! I have also recently started exercising an hour a day 5 days a week where before it was about an hour total a week and I think that is helping a huge amount. I also have fibromyalgia and feel like the oils are helping a LOT with that. The inflammation and soreness has greatly lessened to what it was before which is why I CAN exercise more. Let me know if anyone wants any more information on doTERRA. I can sign you up. This is the answer to controlling our own heathcare. I’m convinced. They also have amazing vitamins – consisting of about 13 pills a day but they work!! They have everything you need. I’m hoping to be off all my meds in the next 3-6 months or less. Can’t wait!!!

    • avatar Lynn says:

      Janet, this may seem like a silly question, but what do you do with the oils?

    • avatar JAScribbles says:

      Hi Janet – I’m still trying to find someone who has successfully gotten off Mirapex. I have not, but I hope to try again soon.

      Good luck with your journey and please report back. I plan to update this blog post to let everyone know what happened with me. My next step is to find a neurologist. My family doctor recommended that I take that route. Now I just want to find a neuro who has been through this with another patient. I do not want to be someone’s guine pig. (sorry for the spelling errors typing fast.)

      Jenna

      Jenna

  6. avatar David says:

    Hello Gang,
    I appreciate all these words of advice. I have been on Mirapex for five years and gain 50lbs on it. My job was terminated or layoff and now I have no insurance. I take 0.5 mg every night. My pharmacy was working with me, and I was paying $15.00 for the prescription. I have one pill left, and tried to get a refill, but they said my RX was up, and I called my doctor who said I need a appointment to get a refill, and I told them I had no insurance, and they want to charge me $125.00 for the appointment. I feel sick to my stomach with this. I have lower my dose to half the last week, and did not sleep at all last night. But I need to get off this devil pill. I am concerned about Neuoleptic Malignant syndrome-I read a post that this could happen when stopping Mirapex. Do I need to be worried? Any other good home remedies or over the counter would be helpful?
    Thank you,

    • avatar JAScribbles says:

      You can also try iron supplements and calcium. Those help me a lot, especially if I take them close to bed time.

      Avoid sugar, as Lynn says, and alcohol, sorry. I know it may seem lke it will help you sleep but it may make your RLS go nuts.

      I have not heard of the syndrome you are referring to.

      Weaning off Mirapex is serious business, I think you’ll need to bite the bullet and see a doctor. Sorry. Good luck.

  7. avatar Lynn says:

    David, I am so sorry. Have you tried going to your local health food store and asking for recommendations? I’ve been taking magnesium for my daytime symptoms & the sensations go away in about 20 minutes. I’ve also eliminated caffeine, sugar & anti-histamines (each of them aggravate RLS) Don’t give up hope.

  8. avatar Vail McGuire says:

    I’ve been on Mirapex for about 10 years now. The frustrating thing is that it was diagnosed by a doctor who had done a sleep study and found that I had leg jerks. It was not diagonosed for RLS, something I had maybe 2 or 3 times a year, but I quickly discovered that if I missed a dose then I had a miserable night of RLS. So, I resigned myself to being on it the rest of my life — until I began to notice that the dosage that I was on was no longer effective, and was causing increasing bouts of nausea. In other words, I could have survived quite comfortably the rest of my life without Mirapex, but now that I am on it, I am compelled to take to it to prevent a problem that wasn’t even a problem to begin with. I have put on around 40 pounds since I’ve been on it and sometimes wake up with an overwhelming urge to eat everything in sight. I am drowsy all the time, have problems with motiviation, and to top it all off, it is the most expensive thing I take. I am angry that the doctor who prescribed it did so without bothering to tell me the side effects that went with it. I am determined to beat this, although I have not slept for the last 4 nights and want to eat everything in sight –I even dream of eating! Somehow, I have to believe that if I ride this out long enough I can get past this point to where I used to be — an occasional bout of RLS, but nothing I couldn’t handle. What right did this doctor have to put me on this drug without letting me know the side effects? My RLS was not that bad until I started taking it! How’s that for irony?

  9. avatar David says:

    Hey gang,
    First night of not taking the miraplex, and it is 4am, not tired at all. Legs have the creepy crawly. I took the calcium magnesium but not working, and I put on some support hose which has helped a little. But I am not taking that pill ever again. More harm then good. So I will continue to fight it.
    Thanks again,
    David

    • avatar JAScribbles says:

      Keep us posted David and good luck. Since Mirapex affects the dopamine in your brain, be prepared for bouts of depression and anxiety or panic attacks. (great, I know) Just tell yourself it’s the lack of medicine. It’s not you or your life. Your brain will need to learn how to make it on it’s own again. It stopped due to the medicine.

      Again, I’m not a doctor. This advice is based off what I’ve read.

      Here is a list of foods that help boost dopamine: http://www.livestrong.com/article/64547-foods-boost-dopamine/

      I’ve decided to decrease my Mirapex dosage. I plan to seek out a doctor soon to get me off this crappy med.

      Jenna

      • avatar David says:

        The first night I did not sleep at all. Last night, went to bed At 3am, and woke up at 6am, so I did get some sleep. Withdrawl symptons are different though. Instead of the creepy crawlee. My arms and back are aching, I mean my muscles. It is different then the legs, my body is in withdrawl from Miraplex big time. I can feel it in the body, but I am not going to take that pill. I will let you know more later.

        • avatar JAScribbles says:

          It’s interesting you mention body aches. When I first started taking Mirapex four or five years ago, one of my side affects was a sore neck and shoulders. I have been experiencing the same discomfort the last few days – but I am decreasing my Mirapex dosage. Interesting.

          David – what caused you to start taking Mirapex in the first place? Was it RLS or Parkinson’s? How bad were your nights back then, pre medicine?

          If you don’t mind sharing this info I think it will be useful to others stopping here. As you update us on your weaning, we can compare pre and post medicine.

          I REALLY appreciate you letting us know what’s going on. I scoured the we and haven’t found any info from other people who have weaned themselves.

          Last night I woke up around 4:00 with slightly jumpy legs but nothing too bad. I’m going to cut my Mirapex dosage again tonight. I plan to continue my calcium, magnesium, and iron before bed. I also plan to take vitamin D, C, and a B-Complex around lunchtime each day AND increase my exercise.

          Crossing fingers!

          ~ Jenna

          • avatar David says:

            Well, it is the 3rd day of no miraplex, and it is 4:22 am and not tired at all. Legs are acting up again, but no aches. I am taking it for RLS by the way.

          • avatar JAScribbles says:

            Good luck with your upcoming nights.

            I’ve cut my dosage by 1/3. My legs are more jumpy in the evening and around 4:00 am, but manageable.

          • avatar JAScribbles says:

            Hi David – any updates on your Mirapex weaning? I hope you are doing well.

            Jenna

  10. avatar David says:

    Thanks Jenna,

    Yes, It was a really tough week, but I am doing so much better now. I still get the legs pain, but not as bad. I am sleeping 7 hours a night, so that is good. No more devil pill and that was my goal, so thanks and I will keep you updated.

    David

    • avatar JAScribbles says:

      Seven hours is really good. Thanks so much for dropping by and keeping us posted. I hope things continue to improve. I can’t wait to hear how things are a couple weeks or a month from now.

      ~ Jenna

    • avatar JAScribbles says:

      Hi David – I’ve heard the RLS rebound can be bad after stopping Mirapex. That your RLS is worse than before starting the meds. Did you experience this? If so, how many days did that last and is it better now?

      I am most likely going to take my last RLS med tonight. Last night I only slept four hours. My legs were so jumpy.

      Thx. Hope you are well.

      Jenna

  11. avatar Patty says:

    Tonight I had an allergic reaction (pretty bad) from the Mirapex. I am really worried because I understand that you should taper off the med but I won’t be able to do that. I wonder what my withdrawl symptoms will be … any idea?

    • avatar JAScribbles says:

      Ugh. I suggest you contact your doctor. it’s weird to have a reaction. Especially if you’ve been taking it for awhile.

      I believe there are other meds that you could switch to that will relieve some of the withdrawal symptoms.

      You may experience – mood swings, anxiety, bad RLS (worse than before you started) and insomnia.

      I suggest you call your doctor’s office even if they are closed. There are on call people.

  12. avatar Lynn says:

    My doctor just cut my dosage of Requip in half to 0.5mg. He suggested that I alternate the 0.5mg with the 1.0 mg until My body gets used to the lower dose. I woke up at 2:30 the 1st night. The 2nd night I took the 1mg pill. The 3rd night I took 0.5mg and woke up at 2:30. I took some 800mg magnesium and was able to sleep until my normal time. So far so good. I had a much harder time switching from Mirapex to Requip, but I was on it for 6 years. I’m happy to say that after getting off of Mirapex 5 months ago I hardly ever have any RLS symptoms in the middle of the day and if I do I take Magnesium and they calm down :)

    • avatar JAScribbles says:

      Ahhh – so you are now off Mirapex and using Requip?

      I’ve also heard good things about magnesium. Do you take caltrait? Oxaite? ( sorry, no idea how to spell them) Ha ha

      I’ve read that taking the magnesium NOT at the same time as your RLS meds may be a good idea. Something to try.

      Thanks for stopping. Are you thinking of getting off meds altogether? Or will you stay with Requip?

      Jenna

      • avatar Lynn says:

        yes, i stopped taking my afternoon dose of mirapex about 3 mos. ago & only take mirapex at night.

        i take magnesium during the day (and not with any RLS meds) only when symptoms occur which thankfully isn’t every day. i don’t take any calcium. i started cutting out everything that i could because there are so many things that can aggravate RLS.

        my longterm goal is to be off of all meds. first, i need to concentrate on getting my back healthy again because my doctor thinks my symptoms are being caused by piriformis syndrome. my RLS symptoms are horrible when my back is flaring up and all of my numbness & RLS symptoms are only in my right leg

  13. avatar Patty says:

    I saw my Dr. and talked with the Pharmacist today. Both say I DO NOT have to taper off. Yikes! I can’t take another one because of the allergic reaction…I hope I don’t have too many or too bad withdrawal symptoms. This is very scary for me. Should I have a drink????

    • avatar JAScribbles says:

      I’m not sure tapering is making things much easier for me anyway. Maybe it’s like ripping off a band aid – just go for it, endure the discomfort for a week or so, and then move on with your life.

      No – don’t drink. Alcohol, sugar, and sleep aids will all make your RLS worse.

      Here is an online group that you may want to join. Read some of the posts. very helpfu people – http://www.rls.org/discussion

      Good luck.

      Jenna

  14. avatar Patty says:

    Thanks for the advice…wine bottle back in refrigerator!

  15. avatar Patty says:

    I got my magnesium today. How much do you take at night?

    • avatar Lynn says:

      Hi Patty. I find that I need about 800-12000mg per flare-up to be effective, but everyone may be different. I started with one pill and waited for 20 minutes to see if it was effective. I took one more if it wasn’t. You will know when your body cannot handle any more (read up on the side effects before taking them). Good luck!

      • avatar JAScribbles says:

        I’m going to look for magnesium citrate. I guess that is absorbed better than magnesium oxide. Thanks for the dosage tip, Lynn.

        I also bought some roll-on Icy Hot ointment. That helped me last night. I seem to get twinges in one to three spots each night. I put some of that on the spot and it helps.

        Jenna

  16. avatar Patty says:

    This will be my 2nd night with no Pramapexiole. Last night I fell right asleep and didn’t notice any RLS but….All the covers were totally off my bed this morning so I don’t think I had a restful night!!

    • avatar JAScribbles says:

      I’ve been decreasing my doses for the last three weeks. Tonight will be my first night with no meds.

      Last night I dreamt I was smashing mice. Ummm. OK.

      Hang in there everyone!!

      Jenna

  17. avatar Patty says:

    Last night was second night with no meds. Very unpleasant dream woke me up an hour into sleep. Could not fall back to sleep until 2 a.m. Ugh! Very unpleasant night but I am NOT going back!!!!!

  18. avatar David says:

    Sorry Gang,

    I have been moving the past three to four days and have been busy with that. I have been sleeping about 3 to 4 hours a night, but it is getting better, and that is with no meds at all. My legs start to hurt and I take a hot shower when that happens. I also make a banana shake before I go to bed and that seems to help me. I don’t like to eat late at night, but it helps me. I also have lost eight pounds since I stop taking the Mirapex.

  19. avatar JAScribbles says:

    Thanks for the updates, Patty and David. I’ve added my updates to the blog post as to what I’m experiencing during my weaning procress. UGH. Very unpleasant!!

    You can do it, Patty!
    David, sorry you are not getting much sleep, but yay at the weight loss! Experiement with different foods. I read one lady is triggered by dairy. I just bought magnesium citrate. It’s supposed to help a little.

    Jenna

  20. avatar Patty says:

    Well it’s 3:07 am and not only am I wide awake my legs are continuously “crawling”. It is horrible and I cannot stay still. I just took .25mg. (1/2 of my .5mg tab) I just couldn’t take it anymore….no relief yet but I am hopeful. This was to be my third night of cold turkey…………..:(

  21. avatar JAScribbles says:

    Hi Patty – ugh. I hope things get better. I know what you’re going through.

    Last night was my second night with no meds. Horrible. I slept maybe two hours.

    I’m going to try and stay off the Mirapex. Ive read it can take a week for the really bad symptoms to go away and then maybe a month (crap!) for the rebound and intensity to die down – back to a manageable level.

    I plan to buy bananas and pumpkin seeds to help my brain make more dopamine. Can’t hurt to try.

    So tempted to write the pharmaceutical company a death threat letter. Their death.

    Jenna

  22. avatar David says:

    I went to bed at 4 am last night and woke up at 8 am, but the creepy crawlers are not as bad, and I am not going back, so fight it. I know after time it has to get better.

    • avatar JAScribbles says:

      It will get better, David and I aplaud you for being able to stick this out. I unfortunately could not handle it and took some of my Mirapex last night. I am seeking out a medical doctor to try and get me off this med.

      hang in there. I was in contact with a specialist out in CA and he said the withdrawal time is bad but there is an end to it.

      Check back in a few weeks and let us know how you are.

      Jenna

  23. avatar Lynn says:

    Good luck, Jenna & Dave. Getting off of Mirapex was one of the hardest things I’ve ever done. I thought I was going crazy. I am stepping down my dosage of Requip right now & it has been challenging, but not nearly as bad as Mirapex. I was on 1.0mg for Mirapex for 2 years, but only on Requip for 5 mos. I’ve noticed that my legs are getting better lately on the lower dose. I’m sleeping a lot better and not needing any supplements in the middle of the day where I used to take Mirapex. My appetite has also decreased and I’ve lost 15 pounds compared to when I was on Mirapex, exercising 4x a week, eating pretty and gaining weight. I’m hoping you both experience the same thing :)

  24. avatar Straussjoe says:

    Like you, I was never told how ugly the side effects could be with Mirapex! After 5 years on the drug here is a list of my experiences:

    1) 70 lbs weight gain! At time I work eat until it hurt and could not understand until just recently why I could not feel satisfied!
    2) I have always been a part time gambler (few trips to Vegas per year) but nothing on a regular basis. Suddenly, I would myself going to tribal casinos and local card rooms! My best guess is I lost over the last 2 years less than $5000 which I am not happy about…what scared me was the lack of concern! It just felt so good, there was no voice in my head telling me to stop!
    3) I cannot begin to tell you how many hours have been wasted shopping online. Items purchased, resold and purchased again. The topper was bidding on a trailer 1500 miles away that I did not even want!
    4) Sex! Until this year, I have NEVER Had sex outside of my marriage! EVER! Now, I cannot get enough! It is not uncommon to engage the services of a prostitute weekly!

    after the purchase of the trailer, I found myself questioning if I even knew who I was! Scary! I have never contemplated suicide but started to understand why a person could make that type of decision. Very scary!

    About a month ago, I contacted a therapist to get some help understanding why I was acting with such a destructive purpose! I explained what I had read about mirapex and the side effects…his conclusion: I have a compulsive personality and that Mirapex was a trigger. Well…..

    I stopped taking the drug 2 weeks ago! Old habits die hard and sleep has been a little hit and miss. On balance, I would say I am sleeping a little better!

    Over eating: Stopped!
    Gambling: I played poker for the first time last night, lost a little … But … It felt like I was back to normal! On urge to hit ATM machine or continue after I had told myself I was done! What a relief!
    Shopping online: is boring now! No urge!
    Sex: Sex drive is back to normal!

    I feel like myself again! My head is clear for the first time in years and it feels great!

    I will NEVER take Mirapex again…I don’t care how bad the restless legs get!

    Hope this helps!

    • avatar JAScribbles says:

      I’m waiting for the 1-800-BAD-DRUG TV commercial about Mirapex. Seriously, this stuff is nasty. So sorry to hear about your troubles, Joe (joe?). I hope everything gets better for you soon. Can I ask how you got off the Mirapex? Did you go cold turkey or replace it with something else?

      Take care everyone! We will get through this. I know a lot of people are finding this blog post and reading. As of now we are not providing much positive news, but they at least know they are not alone.

      An update on me: I am still taking Mirapex after trying unsuccessfully to wean off. I decided to see a specialist at the Mayo Clinic in Rochester, MN. I haven’t made the appointment yet though. I anticipate this will cost a lot of money so I’m waiting for a few bills to get paid off first.

      ~ Jenna

  25. avatar David says:

    Hey Jenna,
    I thought I would chime in again. I am officially off Mirapex, the devil drug. It took a while, and I don’t have 8 hours of sleep, more like 6 hours, but everyday gets better. My mind feels a lot more clearer, and focus a lot better. So I am extremely happy right now.

    • avatar JAScribbles says:

      David!! I’m so glad you stopped back in to give us an update. I’ve been hoping you are doing well. So glad to hear you made it through the weaning process. I assume your RLS is still there – but at least you don’t have the icky side affects of Mirapex.

      You may want to give Valerian Root a try to help you sleep. I found this this the only sleep aid I can take that doesn’t make my RLS worse. Here is a link to the product on Amazon – http://www.amazon.com/dp/B00014EA6A/?tag=ga0b72-20

      It smells like a cow barn, seriously. On nights that I need a really good long sleep, I take two pills about a half hour before bed. My dreams are crazy, but funny after taking this product. The last time I took two pills I sleep soundly until 7:15 am!!! I couldn’t believe it. So, something to try.

      Take care David – I wish you happiness post Mirapex!

      Jenna

  26. avatar Straussjoe says:

    Yes, I have gotten off mirapex completely!

    The impulses…GONE!

    Legs issues returned and at the beginning were worst than ever but after a few nights started to bother me less and less! I live in California where smoking pot is legal with a doctors prescription. Pot has been a god send….legs cramps are not as bad and the pot also puts me to sleep!

    2 weeks now and I will NEVER take mirapex again!

    Good luck, it is worth the effort to get your sanity back!

    If I can be of any help, let me know!

    • avatar franklin fernandez says:

      funny you said pot:pot was an aid in quiting meriplex, I have only been off for a week I did go cold turkey but with the help of pot. I dont smoke for fun but I do before going to bed and it has help. I have to admit day 6 or 7 was really hard, but I did a double shift and my hours were off. I still get the RLS feeling but it seems to be getting less and less. For a long time I thought something was wrong with me because my arms started getting the twitch too. My RLS use to be bad from time to time but after meriplex it was everynight. Driving was impossible at times. I came across pot as help by mistake but I noticed that it didnt bother me when I smoked and I slept well, this lead me to try to quite and then I came across this website and made me feel better I was not alone,just trying to explain to someone the feeling of RLS is impossible,

      • avatar JAScribbles says:

        Hi Franklin – thanks for your comments. Even though it is illegal, weed does help with RLS symptoms.

        If you live in a state that allows medicinal marijuana, you could see your doctor for an Rx.

  27. avatar Straussjoe says:

    In California, smoking pot can be legal! Nothing has worked better for my restless legs and it is also a wonderful sleep aid!

    Let me know if I can be of any help!

  28. avatar Socketman says:

    Hi all,

    I will be soon trying to ween myself off of Mirapex. I take .25 mg twice daily. Have been on it for 10 years…nightmare. I dream of the day when I can get off this evil drug and get my life back. Can anyone who has successfully gotten off Mirapex tell me approximately how long it took. Thanks

    • avatar JAScribbles says:

      Hi Socketman – I see that no one has responded to your question as to how long it took to get off Mirapex. Sorry. My guess is the bad symptoms last for around a month. But that is just a guess. Your regular RLS – pre medicine – will return. Again, just guessing.

      ~ Jenna

  29. avatar Mark in Virginia says:

    I’ve just recently gotten away from Mirapex for two weeks now. A couple of years ago I went through the same thing (not as bad) getting off of Requip.
    I would suggest you go very slowly. Reduce your dosage in as small amounts as possible and go three weeks to a month with each new dosage. For me, the third and fourth nights were always the worst with each dosage reduction. When I finally got down to a quarter tablet of a .125 mg pill I thought I was pretty much weaned but that first week without ANY Mirapex was still rough for me but it’s been a lot better since then.
    My doctor did give me Baclofen to help me with this. A 10 mg pill takes about 45 mins to an hour before the effects start to help out. Some nights I had to take them two or three different times throughout the night. That and Folic Acid, Magnesium Citrate the occasional Valerium Root and even some almonds.
    It’s been so much better. Legs still act up every night but it’s not nearly as severe as it was. My mood is improved and I’ve been able to control my spending habits again. Mirapex may very well help a lot of folks – and it did seem to work for me at first, but then it was causing me much worse restless legs than before. I’m much better off now and I hope that anyone else who decides Mirapex is not working for them can know that it DOES get better even though it may not seem like it. Just go slowly.

  30. avatar Lilly Parker says:

    This website is a godsend for me. I have been on Mirapex for 2 years (2 x .25 mg) about 2 hours before bed. The litany of side effects I have read here are the same that I have. The worst part of it for me is: 1) I had only occasional, moderate rls when my neurologist prescribed Mirapex (stupid me that I took it). Mirapex has made my rls much much worse. I have gained 25 pounds, (want to eat everything in sight). All rls symptoms are worse than ever before. I have tried cutting down and failed several times. I think the gradual cutting back over a long period of time is the only way I will ever get off this poison. No one close to me understands the hell this drug has caused. Unless you have experienced it, I don’t think it is possible to really understand and empathize. My neurologist is pathetic. His brilliant idea when I insisted that Mirapex was making rls worse (he doesn’t believe that), was Ambien to help me sleep when I stop (cold turkey) taking the drug. As you can imagine, the Ambien did not touch the wakefulness and misery caused by not taking the Mirapex. I am going to try the supplements mentioned on this website, dietary restrictions, and slowly cutting back and hope and pray I can get out of this misery. One positive thing I would mention: traveling long distances by car had become a nightmare. On the last trip I munched sunflower seeds during the ride home and was amazed to realize afterwards that I had no problem with rls during the trip. Thank you for this website. I hope and pray that everyone will find success in getting off this miserable potion. The encouragement here is invaluable.

  31. avatar Straussjoe says:

    I have been off Mirapex for over a month!

    Here is what happened for me:

    1) at the beginning, RLS got worst….much worst!
    2) almost immediately I started feeling like myself again!
    3) the medical marijuana has been a goodsend! I have been using a strain that provides more of a body buzz than a head buzz! At night just before going to bed, I smoke a little..within 15 minutes my legs feel normal! The marijuana is also a wonderful sleep aid. I am usually out cold within 15-30 minutes!

    No more feeling like I should be gambling!
    No more compulsive shopping!
    Still enjoy sex, no longer feel like it is some sort of strange compulsive behavior!
    Eating/weight gain….still working on that one!

    By far the biggest payoff, over the weekend my wife commented … It is nice to have my husband back! The change on the front end with mirapex was very gradual, getting off was the opposite…change occurred very rapidly and was extremely noticeable by my immediate family!

    Don’t give up, keep fighting the fight…from my experience, it was worth it!

  32. avatar Socketman says:

    Hi all,

    Thanks to everybody for sharing their experiences.
    I have been on Mirapex for 10 years and like everyone else, it was a great help in the beginning. But the cure eventually became the poison. I have tried once unsuccessfully to rid myself of this drug. I lasted about one week and then caved. Funny but I think the drug eventually made my RLS much worse. I don’t remember having such horrendous tingling in the beginning. I wish I could go back 10 years and just said no, I honestly think RLS is some sort of deficiency that is very difficult to figure out. Over the years I acquired dry mouth, debilitating drowsiness ( I work shiftwork to boot ), a dull pain behind my left eye,etc. My life has been changed by this drug. I used to be so outgoing and full of life but now feel so fatigued and so drained that I have become a bit of an introvert. My neurologist keeps telling me that there is no problem with the drug, it’s just that I am not sleeping….take more medication. I also used to just have it in my legs, now I have it in my arms as well. I found out on the manufacturers website last week that as a result of augmentation, it can spread to other limbs. Should have been taken off this stuff years ago. I also saw a report on the FDA’s own website last week that said Miapex could possibly lead to heart failure. Wonderful stuff. I just need some time off of work now to start the process. Thanks again to all who replied. It’s fantastic to know that it can be done and life can be good once again. I miss my old self. Cheers!

  33. avatar connie says:

    You are doing a wonderful service for those of us who experience the weight gain, compulsiveness, sleepiness in church or driving a car and lack of concentration. It is a scary situation to try to live without the so called help for RLS, but in the long run it affects so many other areas and makes us become someone we are not. I am on l mg. of the drug and have cut down to 1/2 and will continue to do so until i am myself again, with the help of the Lord. I am very anxious and need to constantly keep busy to deal with it. Today is my 4th day of cutting down and wish all of us the luck and guidance we need to complete this journey. I will be happy when i am medication free.

    • avatar JAScribbles says:

      Hi Connie – good luck! I want you to know two things: 1) when you get to the point of being med free, say, the third night… it will be rough. It’s not you being weak or not being able to handle it. It is the medication withdrawal. 2) there are people who have weaned themselves off. It is difficult but possible.

      Take magnesium citrate, calcium supplements (not dairy food), and Valerian root to help you sleep. These will not help much during the hard withdrawal times, but hopefully once the rebound starts to subside, the benefits of these natural treatments should start to kick in.

      I want my comment to be encouraging. You can do it.

      ~ Jenna

      • avatar connie says:

        Dear Jenna, thank goodness for someone like you, who takes time to stay involved with us. My question is, how much magnesium citrate to take and calcium supplements. I am so grateful I stumpled over your website while looking for a way to leave Mirapex behind. Thank You, Connie

        • avatar JAScribbles says:

          Hi Connie – I’m happy to help. I’m also hesitant to give you dosage advice in the magnesium citrate and calcium. Perhaps you could start with the recommended daily dose.

          Stay in touch with your doctor, a nutritionist, or a pharmacist. Hopefully they can help with the withdrawals.

          Also, see the other comments in this post for tips from others.

          Good luck. Hugs!!

          ~ Jenna

  34. avatar Lynn says:

    i’m so happy to say that i’ve successfully weaned myself off of mirapex then requip & gabapentin. it’s taken about a year, but i’m happy to say that i’m sleeping better than i have in over 7 years. i believe that my restless leg issues stemmed from piriformis syndrome though which still bothers me. at least that pain is manageable with exercise and doesn’t rule my life like RLS did. i hope that each of you is able to escape the grips of this awful symdrome and it’s even worse medication.

    • avatar JAScribbles says:

      Lynn – that is fantastic! Can you let us know how you did it? I think you may have mentioned it above in a comment but if you could recap that would be awesome and very helpful for other readers.

      ~ Jenna

      • avatar Lynn says:

        I weaned myself off both Mirapex & Requip by both cutting my dose in half then eventually taking it every other day for the last month. When I had symptoms during the day I’d take a magnesium supplement. Then did the same thing during the night when I had symptoms and was taking it every other day. I also eat very healthy diet & exercise 3-4 times a week.

        Originally i had switched from Mirapex to Requip & had switch gradually by taking a low does of Mirapex while taking Requip. Honestly, it was hell. I didn’t sleep for 4 days. I thought I was losing my mind, but I got through it. I hope that all of you can too. If you have any questions please let me know!

        • avatar JAScribbles says:

          Thanks Lynn – questions. 1) So you switched from Mirapex to Requip first? 2) How long we’re you just taking the Requip? 3) Which was more difficult, going off Mirapex to Requip, or the final withdrawal from Requip? (if that is what you did)

          Last one – how long have you been off both and how are your RLS symptoms now?

          Thanks for keeping us posted!!!! I assume your weight is down too? I think you mentioned that in another comment.

          ~ Jenna

          • avatar Lynn says:

            yes, i was on mirapex for several years & it stopped working, so my doc took me off that & put me on requip. i was on requip for under a year. i took last dose of requip about 6 weeks ago & at that point i was taking .125 every other day.

            the withdrawal during switching from mirapex to requip was MUCH worse than requip. i’m not sure why, but it was awful. it took me about 3 mos. to switch medicines. it took a lot of communication with my doctor about dosage. i was on requip for about 8 or 9 mos total. the intention was to take & wean off. it sort of bridged the gap between mirapex & no meds. it really gave me opportunity to sleep & get healthy again because i was in a downward spiral on mirapex.

            after i started requip i began to feel a lot better & was able to start exercising regularly. i think my weight loss is a result of that & no urge to eat compulsively.

            i’ve been off requip for about 6 weeks. once in a while i have symptoms, but nothing i’ve needed medicine for. if i do have a flare-up (which isn’t very often), i’ve taken magnesium & it works like a charm.

            i hope this helps :)

  35. avatar Renny says:

    Hi Jenna
    I came off Mirapex back in October 2012 having taken it for 3 months for RLS. I have had DAWS which started about a month after coming off and to this day it isn’t showing any sign of going away. May I ask if you ever got over the DAWS and, if you did, how long after your last dose did it take for the symptoms to go? I would really appreciate any help you can offer as I don’t know how long I can take the brutal depression/anxiety? Thanks, Renny

    • avatar JAScribbles says:

      Hi Renny. So sorry to hear about your depression and anxiety. I was unable to stop the Mirapex. I’m still taking it. Perhaps others who have commented to this thread can offer some advice.

      If you are considering an antidepressant know that some may make your RLS act up. Google – Restless Leg Association Rochester MN. They have Rx fact sheets and may have a list of the types that will not make your symptoms worse.

      I just Googled – “tips for dopamine withdrawal depression anxiety” and came up with some info. Dopamine is found in many opioids. Many people mentioned depression as a withdrawal symptom. Using their methods to ease withdrawal should also help. Hopefully.

      Please note I am not a doctor. Disclaimer. Ha ha

      Take care! Check back in.

  36. avatar JAScribbles says:

    Hi gang! I’d love to hear from some of the people who have weaned themselves off Mirapex.

    Share anything you like or…
    How are your RLS symptoms now?
    What do you do to get some sleep?
    Did you have depression or anxiety as a withdrawal?
    How did you combat that?

    Thanks. Big hugs to everyone!!

    ~ Jenna

  37. avatar Renny says:

    Hi Jenna,
    Thanks very much for replying. So did you find that staying on Mirapex was the only way to ease the w/d’s or are you weaning off?

    • avatar JAScribbles says:

      I am no longer weaning. If you read the end of my blog post you’ll see my day to day detail. That will outline what i went through. i only made it four days. After the “Fail” entry I went back to my regular daily dose and have been taking it ever since.

      Good luck!

      • avatar Renny says:

        Jenna,
        Thanks for posting the ‘weaning off mirapex’ request, it would be very helpful to hear of any similar experiences. Renny

  38. avatar Paul says:

    Hi all,

    I have been off of Mirapex for 3.5 months now. It has been very difficult and the lack of sleep has been brutal but i have forced myself to soldier on. It does slowly get better with time. I work shift work in a factory ( days-afternoons ). Day shift is bad as i usually get about 3-4 hrs sleep but i catch up on weekends and i usually sleep in on afternoons. I find if i have a bad night that i usually get quality sleep from around 5 a.m to around 11-12. I am in the process of looking into Heavy Metal poisoning as i have worked in factory for 20 yrs. It hasn’t been easy as my RLS was brutal especially over the last 5 yrs or so, i couldn’t lay down without tremors and tingling running through my arms and legs. I do feel much better now being off of Mirapex. No more feeling tired all day long. ( strange as the meds are supposed to help you sleep but end up causing sleepiness during the day ). Anyway, i hope this info helps someone out there. cheers Paul

    • avatar Renny says:

      Paul,
      Did you have depression after you weaned off?

      • avatar Paul says:

        Hi Renny,

        I had a bit of depression while still on Mirapex but nothing as i weaned off. What was your dose? I was usually .25 mg at supper and .25 mg at bedtime. Things seemed to get especially bad for me when my neurologist had me double my meds because i wasn’t sleeping well. I seemed to get much worse after that, started getting a little depressed, dry mouth, extreme tiredness during the day. I went back to regular dosage and then decided to try to get off of the meds for good. It hasn’t been easy but it was worth it. Take care, Paul

        • avatar Renny says:

          Paul. My dose was 0.5 twice a day and I was tried on other D/A’s before that so they have probably contributed to my problems as well. I think my dose was pretty high.

          • avatar Paul says:

            Hi Rennie,
            My problems seemed to worsen when i got put on the same dose as you. Depression is hell. There is great info on depression at mercola dot com. That is usually where i get all my info. Hope this helps.

  39. avatar Renny says:

    Thanks Paul I’ll have a look

  40. avatar Renny says:

    Update; this weekend was so bad with the depression and anxiety I had to make an emergency appointment to see a doctor. He wasn’t much help though and all he did was to tell me to see my normal doc next week when he comes back from holiday. He also gave me some Diazepam for the anxiety, hope that doesn’t extend the w/d’s!
    It seems to be getting worse by the day. I would really appreciate it if anybody could give me an idea of how long this hell might last, does it reach a peak (the depression) and start to get better or will it get worse?
    Thanks, Renny

  41. avatar Paul says:

    Hi Renny,

    Look up the name Peter Breggin and find some info there for your situation. It’s always a tricky situation when it comes to anxiety and depression.
    He is a well renowned Psychiatrist known as the ” conscience of psychiatry “. Are you close to Ithaca?

    • avatar Renny says:

      Hi Jenna, I live in the UK so I’m a long way away! I’ve looked Dr Breggin, it looks a good site and maybe I can learn something there. Thanks

      • avatar Renny says:

        Hi Jenna, I thought I’d let you know that I have been prescribed ‘Wellbutrin’ (Bupropion) because I could no longer cope with the depression. Wellbutrin is a Dopamine reuptake inhibitor so I’m hoping it is going to help. I have been on it now for 5 days and so far, all i’ve felt is anxiety but they say it can take up to 6 weeks before you get the full effect. Here’s hoping I can make it that long! Renny

        • avatar JAScribbles says:

          Hi Renny – I’m glad your docotor has given you something to try. Take care and check back in with us in a month or so.

          Jenna

  42. avatar kim says:

    Thankyou all I was desperate to find someone who understands my friends think rls is a joke! I have been on mirapex for 6 yrs gradually increasing dose as augmentation set in.My doctor has put me back down to my original starting dose due to serious fluid retention. Last night I walked for 8 hours I couldnt even stand still and withchronic back pain I am in aright mess.l am going to get off this drug but I am so scared.would the doctor giving me a strong sleeping tablet for a couple of weeks help with rebound withdrawals? I feel for you all I cant manage anymore especially when people laugh when I say its restless legs.thankyou all

    • avatar JAScribbles says:

      Hi Kim – your doctor may be able to prescribe something to help you sleep. You’ll need to be careful of becoming dependent on the sleep aids though if he/she gives you opioids. But if you can use them just when it is really bad, and not for too long, then I think you should be ok. They will know best.

      I’m not a doctor so talking to your physician about sleep aids is best. You can assume the bad rebound symptoms to last for at least four to eight weeks… from what I’ve read that is typical. Sorry, I know that isn’t what you want to hear. It may be a few months before you are feeling back to your pre-medicine state. Again, these are just impressions that I’ve gotten from reading other people’s comments. There isn’t much documentation regarding people weaning off Mirapex.

      You can do it – others have. It will be difficult, but it is possible. Know that it is the icky medicine and not you being weak when things get tough. Even the strongest of burely men would be going through what you are now – it is a withdrawal and rebound of the medicine.

      Jenna

      Edited to add – I repeat, I am not a doctor. My advice is that of a non skilled blogging mom. Do not proceed with anything I say until you get professional help. I am not a medical expert in any shape or form.

      :-)

      • avatar kim says:

        Thamkyou for replying I will let you know how I go, I am seeing my doctor on monday.Has anyone else had gull body fluid retention whilst on mirapexin?

        • avatar JAScribbles says:

          I gained a lot of weight and others have reported that as well – I haven’t heard of just gaining fluids. But anything is possible with this med I guess.

          Jenna

  43. avatar franklin fernandez says:

    I know what I am about to say is not legal but here goes anyway. I was told that pot helps. I tried it and yes it does. I have been off for a week plus now and I went cold turkey, yes my 6 or 7 day was bad but I was able to beat it with the help of pot and Hydro. I know after I beat this that giving up pot will be a whole lot easier then the mariplex. I use to think that it was me but I know now it was the mariplex that gave me all the other system.

  44. avatar franklin fernandez says:

    come on now! I would think its suppose to get easier as time goes by. Day 9-10 not sure anymore seemed like my legs would not stop. First time I was tempted to take the bad pill. It was close. All I can say its bad some nights. As I go into my second week, I pray I stay stong. The one thing I have noticed is that when it flairs up I am able to walk it off. Now when I was on mariplex there was no walking it off one had to wait till it took effect. which sometimes was an hour or so.

  45. avatar kim says:

    You are doing really well Franklin and I have tried and failed mirapexin withdrawal myself so I know what you are going through. How can such a trivial sounding condition as restless legs cause so serious problems. Its a nightmare condition.I am weaning off by a quarter of a tablet a month, I cant cope with cold turkey as I have spinal surgery problems and cant cope with back spasms when pacing 24/7.You are not alone I and many others understand.Keep us informed on how you going

  46. avatar JAScribbles says:

    It’s so nice to see everyone stopping by to comment on RLS and support each other. It just shows you that we all care and know what each of you are going through.

    There is a big community here – http://bb.rls.org/

    A forum and discussion board of people who have RLS – they discuss other medicines, diet, pregnancy and RLS, new meds on the horizon, etc.

    Check out it.

    Thanks everyone for being such great virtual friends and support to other RLS sufferers.

    Jenna

  47. avatar DonP says:

    I have been weaned off Pramipexole completely, i was on it and Venephlaxine for depression and the the Pramipexole for the RLS it brought on. I have been Completely off both now for almost 2 weeks now. My RLS is occasional and mild but the nausia and head spins are terrible my depression is licked but the rebound is unbearable for the time being i hope that this is a relatively short term side effect to coming off the meds. Overall things are getting better for me off than on the meds

    • avatar JAScribbles says:

      Hi Don – thanks for leaving a comment with your experience with Mirapex. It will help others know they are not alone. I’m wishing you all the best!

      Jenna

  48. avatar Sharon Flores says:

    I have been taking mirapex for. 10plus years. About 2 years ago I tried to go off of it and just about lost my mind. I didn’t sleep all week except for tiny bits when my exhausted body would just pass out for a few minutes. I have researched the side effects and am convinced that a whole lot of my health problems relate to the mirapex . I will get off of it one way or another. Want to find a doctor who will help so if anyone knows of one, please post.

    Srf

  49. avatar Lynn says:

    I saw a pulminologist & he helped me wean off of the meds. I took me longer than he estimated, but I did it. I’ve been meds free since December.

  50. avatar David says:

    Hello Gang,

    I have seen a lot of post lately and thought I would chime in. If you don’t remember me I was on Miraplex for about 6 or 7 years. Because I was laid off and I could not afford my miraplex I had no choice but to get off it. It has not been over a year now since I taken Miraplex, and I so excited that I am finally off the pill. I do miss the great sleep I had when I was on it, but after time it does get better. The side effects was crazy dreams, and not sleeping at all for 3 to 4 days in a row. Your body does got thru major withdrawls sympton and they were terrible I will not lie about that. I took many late night walks around the block and got so physical tired that I had no choice but to pass out. Hot showers really help me and hot baths help after I went for long walks. But I also gain so much weight when I was on miraplex and lost 20 lbs since being off it. My gambling has come to halt also. Mind over matter is the best way I fought thru it, even after getting insurance again I was not going back on it and never will. I have learn a lot from Physicans handing out meds without questioning why I need them??? Educate yourself now to many side effects from these pharmaceutical companies that answer to no one if they can make a profit off it.
    Good Luck everyone.

  51. avatar kim says:

    Hi everyone
    Just an update I am weaning off mirapexin just quarter of a tablet a month as its the only way I can do it.Been 3 weeks on lower dose and have had symptoms but they are bearable unlike when I tried cutting my dose drastically, so gar so good.Next week I will be reducing by another quarter, this way is going to take a long time but hopefully will get there in the end.Good luck to anyone who is trying to get off this drug

  52. avatar Stephanie says:

    Reading all of this scares me. I have have had RLS for about 15 years, with the last 2 years being the worst of it. I was prescribed Pramipexole (Mirapex) and thought it was the wonder drug. I have blamed my low weight gain and depression/anxiety on the fact that I was in the middle of grad school applications, but now I am not so sure after reading this. My memory is shot and I have a mental fogginess that never goes away. I want to stop taking this now, but I am afraid of the discomfort that will come. I am going to schedule an appt with a new doc to see what they say. I am about to start grad school and I can not go into this program forgetting everything.
    Wish me luck!
    Stephanie

  53. avatar kim says:

    Hi Stephanie,
    Try not to panic after reading all the comments it is possible to wean off mirape.I have found it best to reduce the dosage VERY slowly.It had taken me 2 months to reduce by one tablet (I was on 4 a night before).-symptoms are manageable, just up one night pacing_ tonight!
    There are other treatments you can try, wait and see what your doctor has to say.You will need to weigh it all up as getting little sleep won’t help with your studies either.
    Do let us know how you get on, good luck
    Best wishes kim

  54. avatar Chris perla says:

    I have been on mirapex for seven years. The first year I was on it I gained at least thirty pounds. My internist nor my neurologist connected the weight gain to the mirapex. I was embarrassed by the weight gain. In addition, I have fibromyalgia which symptoms are sometimes increased by exercise. I thought these doctors must think I eat all the time. I started on .25 mg of mirapex and as symptoms were not controlled the dose gradually went up to 1 mg. I have not had to increase the dose for the last three years. I told my neurologist that I wanted to get off the medicine. He agreed that I should give it a try. I have decreases the mirapex by .25 each month. Last night I did not take mirapex and slept well. I will keep you posted on my progress. I am hopeful that I can lose weight now. I recently went to a hypnotherapist to help with weight loss. It has helped to decrease my desire for sugar.

  55. avatar kim says:

    Hi everyone just an update. I am now down to 2 tablets at night by reducing my dose very slowly.This is the lowest I have managed for some time.Just had one horrendous 24 hours whilst weaning, rest of time a nuisance but manageable.Will check back in next month.Good luck to all

  56. avatar Jennifer D says:

    A good source of information on RLS and alternatives to the dopamine agonists like Mirapex and ReQuip is this page, run by a doctor who specializes in RLS: http://rlshelp.org/

    If you go through the patient letters, you’ll find tons of info! Good luck.

  57. avatar Kimmie says:

    Hi just starting the process of weining from Mirapex. I have realized after being on this drug for 20 years it is time to STOP.
    Here is a list of reasons why: Not sleeping, legs and arms are not only twitching but are getting strange pains in them as well. The fog that is with me 24/7 . medication not working. hair loss. sex drive. 35.lb gain. drinking coffee to try to participate in life. heart palpitations. high blood pressure . feeling like I am having a heart attack. neck pain. shoulder pain. now my back is killing me and I am stooping. no energy to do anything. moodiness. compulsive. walking around aimlessly. chest pain. Ok I am only 45 years old this is crazy!!! My husband and I are going to try to do this, I cant do it alone. This is what I am going to try: No Mirapex. Bananas. not eating after 7:p.m. staying up until I pass out. I have a hot tub, getting in it lowers my blood pressure, so I will do that as often as I need to. wear my cpap machine. walk around if legs are real bad. I hop its not too bad but I sure am afraid. I also looked up healing so I also did and will pray for help. I quit drinking 2 years ago and from reading this blog I think this is going to be much harder. I usually go to bed at 8 and it takes 3 hours to get legs to stop with med before I go to sleep. My body has not noticed yet that I am not taking it. It is 10. My toes on my right foot are pushing into the carpet and my leg is slightly tense above it. I will let you know. Wish me luck, no better yet say a prayer for me please. My health depends on it very concerned for my heart.

    • avatar Lynn says:

      I’m so sorry Kimmie. I was only Mirapex for a few years & it took me a year to wean off of it. It was hell at first, but I got though it. I too saw my health declining at a young age. Stay strong. You can do it!

      • avatar Kimmie says:

        It is now 2 a.m. I was using my cpap machine and trying to stretch my legs to keep them from jumping. It only worked for a short while now I am up. This is the first night. The sharp pains I have been having with the mirapex have not occured. I suspected that was what was causing them. It is going to be tough I am sure. Thanks for your message Lynn. I will keep updating to share my experience. Kimmie

  58. avatar Kimmie says:

    Well lived through the first night. At first no movement in limbs , then it returned in arms and legs. I only slept a short amount of time all night. I had a very weird dream that giant birds were stripping the complete shingles off of my new roof. I drank lots of water last night and just worked on the computer. Feeling tired and my neck hurts this morning. Trying no caffeine today or eating past 7:30 tonight.

    • avatar Kim Waller says:

      Hi kimmie my thoughts are with you I am going through mirapex hell too.i have managed to half my dose but legs so bad.I wish you luck.

    • avatar Lynn says:

      Kimmie you’re in my prayers. This will probably be one of the hardest things you’ll do in your life, but it will be worth it. My doc told me that the body experiences withdrawal (like a crack addict) when weaning of this drug.

      I had to take other meds to wean myself off Mirapex & then wean off of those. Now I take a high quality magnesium before bed & I’m able to sleep through the night.

      I also find that certain foods like sugar, chocolate & caffeine make my leg much worse. I try to stay away from them and pay for it when I don’t :)

  59. avatar Kim Waller says:

    Hi kimmie my thoughts are with you I am going through mirapex hell too.i have managed to half my dose but legs so bad.I wish you luck.

  60. avatar Kimmie says:

    Hi Kim, Hi Lynn,
    Just went through a night of hell, cried and hurt but I did finally got some sleep. I almost caved in but my husband held me and said ,it will get better, and that I can do it and that the mirapex wasnt working anyway. This is what I did : I found some natural remedies and it listed some things to do that helped others. 1. 1tsp mustard as soon as my legs would really act up I would eat it on a spoon. ( I lost count of how many spoons of mustard, I think about 5 times from 6pm to 4 am) I am also drinking lots and lots of water to get it out of my system. I used vicks on my arms and legs when they acted up too. I put a bar of soap in the bed and took a tylenol. It was bad but I got a little sleep from about 4;30 am to 7 and a little more from 7 to 8 . I just went cold turkey and it wasnt as bad as I thought it would be yet . the mustard and vicks seemed to help most, along with lots of water. I appreciate you and hope we can all figure this out together and come out on top soon. The web site I read about the remedies was (My home remedies.com) I am also going to go to store and get the Magnesium and some applecider vinegar. Someone said that worked too. keep trying girls and pray for each other and yourselves when you need too.

    • avatar Kim Waller says:

      Hi kimmie you are doing so so well you should be so proud of yourself if you can do this you can do anything.Have you thought about getting aweeks supply of sleeping pills just to help you during the worst of it, thsts what I may do.I glad you have got a good husband helping you through this hell.Sadly my husband dosnt fully realize how bad this thing is although he sees the state I am in! I am managing sime sleep on my reduced dose and plan to cut down even furthet soon but I am scared.I will follow your tips about them mustard and vicks.Have you tried eearing a compress bandage on yoir limbs that can help a tiny bit.Have plenty og hot baths.Do let me know how you are doing and contact me anytime .Good luck kim

      • avatar Kimmie says:

        Hi Kim ,
        The third night was actually bearable. I did go get some hylands natural leg cramp pills, and continuing drinking lots of water and soaking. I did get more sleep but about every hour or 2 got up and reapplied the vicks and ate the mustard. I moved to another room so as not to keep husband up so i woulnt worry about that. This stuff is strange it moves around like a dog chasing its tail, in one arm then same side leg then it changes sides .hmmm . I think it is starting to get out and I think stopping it is the way to go not sure if the other things can work with the powerful drug in my system. I was on it since I was 24 or so and I am 45 so just one day at a time I will try new things to get off of it for good. I will try compresses tonight. Keep trying Kim and I will too. Have a good day!

  61. avatar Kimmie says:

    Well 3rd night best so far. I used Melatonin as a sleep aid and hylands leg cramp for relacation. I used vicks again on arms and legs. I am still convinced the mustard is real helpful and added magnesium as well. I only had to get up 3 times and the last was at 2:30 a.m. I am amazed, my blood pressure has gone from 165/95 or 100 to 126/65 which is awesome. I check my pressure at different times to get a general reading. My doctor was concidering blood pressure med if I did not get straightened out . Also, I have already lost 6 lbs. I am drinking lots of water and drinking 1tbs apple cider vinegar in hot water with malasses. I know but I am trying anything! Seriously. I will start trying to see which ones work best when i get caught up on my sleep. I also walked my dog this morning but it was about 25 so not very far. Will walk more when it warms up. Let me know how you are doing…. Thanks hope you are still sticking with it Kimmie

  62. avatar Kim Waller says:

    Hi kimmie hopefully you are now over the worst of it well done.What dose of mirapex were you taking? I am managing on my half dose and as soon as I get my thyroid levels right (I have an overactive thyroid only diagnosed 5 weeks ago( I will reduce my dose even further so i am reading with interest everything you are finding helpful.I have stopped taking amytriptilene as i have read it maked rls worse.This has helped a little.I am managing on lower dose still got symptoms but are bearable at present.I like the bit aboutloosing weight as I have gained with mirapex and lots of fluid retention.Bye for now kim

  63. avatar Kimmie says:

    Yes Kim, I am so glad you are also doing well. I was on 1mg per day. Taken at night. You can do it ! I also have thyroid problems. I am on levothyroxine for hypothyroidism. My levels were really messed up for quite a while and my doctor is retesting me in about a week or 2 from now. So I know what you mean we have to let things that important get corrected for sure. Will give you another report in the morning. Hope you rest well. Kimmie Let me know things you are trying too. Thanks

    • avatar Kim Waller says:

      Hi you are an inspiration to those of us trying to get off this drug kimmie.I am doing ok ingact some improvement now I am off amitryptilene.My thyroid is so overactive it is off the scale so that can cause sleep problems too.I feel more confident that I can do this now.Take care kim

    • avatar Jenna says:

      Kimmie – I just wanted to double check… You were taking one full mg of Mirapex? Or .125?

      I take .75

      I started off with a lower dose but needed to increase over the years. Did you do the same? I think I’ve been on it for 8 years.

      Also – mustard? I’m curios about that. What kind? How much? How did you think of that. I’ll try anything – even though I hate mustard. Ha ha

      :-)

      I’m inspired to try again. :)

      Jenna

    • avatar Jenna says:

      Correction – I take .375 a couple hours before bed.

      Jenna

  64. avatar JAScribbles says:

    Hi gang – thanks so much for stopping by my blog and supporting each other in our Mirapex weaning struggles. I am still taking this med. You are all so nice and helpful in this effort.

    FYI – this blog post and all the comments will soon be moved to http://www.JennaScribbles.Wordpress.com

    I will post the link to the exact post once it is up and running.

    Jenna

  65. avatar Kim Waller says:

    Hi jenna thankyou for starting this blog and taking the time to let us know when a new comment is posted it is much appreciated. Wishing you luck on your journey off mirapex

  66. avatar Kimmie says:

    I am so glad you have gotten off of one your medications Kim. Yeah! I did figure out last night that eating a piece of fudge after dinner is a nono for me. Had rough night with the right leg and arm until about 3am. I am not eating sweets tonight and will try the celery before bed tonight. My blood pressure is still awesome and I actually took a good nap without my legs bothering me today . That is a big deal for me! woohoo. My husband says he can tell a difference in my personality, I seem calm and more engaged . Well I am going to keep trying I took my magnesium this morning and will take one before bed and eat the mustard and use the vicks. I am adding the celery is all tonight. Oh and the applecider and mallasses I will skip seems to bloat me up. mabe I am doing it wrong. Oh well, got a few things done today and I too am thankful we can go through this with others. Good job Kim and Keep it up Jenna and thank you for this sight …. Kimmie Heres to happy new year of peaceful sleeps ( we will figure it out faith is what we need)

  67. avatar Kimmie says:

    Yes, I was taking 1mg of mirapex a night. I got on a site blog byhomeremedies.com and that is where I got the mustard idea among others from. I just put regular mustard on a tsp and eat it and drink lots of water. There are like 30 pages of remedy experiences people have tried.
    These things do seem strange but why did we not question a drug for Parkinsons…. I believe you have to just quit. It is not working anyway so why keep hitting your head against a brick wall. That is why I had everything in place that I wanted to try before I quit. The drug takes time to get out of your system. It doesnt happen the first or second day. But I was having high blood pressure, and chest pain to the point I was about to have to be referred to a cardiologist. My blood pressure is now excellent at 127/77 and I have not had any hint of chest pain since stopping Mirapex. I get a little more sleep each night and yesterday was able to take a nap . I use vicks at night and rub my arms pretty hard if they act up and it works, but again I am unsure if these techniques or remedies will work with people still taking the drug. It is a mental thing as much or more than physical. We can do it just try… Best wishes, what do you have to lose…. It will take courage, patience and time to get past the drug. I will keep trying remedies until I have found one that seems fool proof and will keep updating. thanks Jenna.. You can do it…. Kimmie

  68. avatar Kimmie says:

    Although dopamine-related medications are effective in managing RLS, long-term use can lead to worsening of the symptoms in many individuals. This apparent progressive worsening is referred to as “augmentation.” With chronic use, a person may begin to experience symptoms earlier in the evening than in the afternoon until finally the symptoms are present around the clock. The initial evening or bedtime dose becomes less effective, the symptoms at night become more intense, and symptoms begin to affect the arms or trunk. Fortunately, this apparent progression is reversible by removing the person from all dopamine-related medications. Another important adverse effect of dopamine medications that occurs in some people is the development of impulsive or obsessive behaviors such as obsessive gambling or shopping. Should they occur, these behaviors can be reversed by stopping the medication. Just found this information about taking the mirapex type drug. Kimmie

  69. avatar Lynn says:

    I experienced augmentation while on Mirapex. That is why I had to get off it. I also had had Some issues with compulsive eating. As a result I gained a lot of weight. I was told that I should not stop taking it cold turkey because you will have a rebound effect.

    I too have to avoid chocolate, caffeine & sugar. They make my legs extra restless & then I need extra Magnesium to sleep.

  70. avatar Kimmie says:

    So Lynn are you off of Mirapex, and for how long? What kinds of things do you do?
    I am reading everything I can because the doctors dont have a clue what to do for it. It seems like different things work for different people just wondering if you have found anything for it and what dose of magnesium do you take, when, and how long does it work? Thanks, Kimmie

    • avatar Lynn says:

      Yes, I’ve been off it for over a year now. I started weaning off it 2 years ago. I was taking .5mg at lunch and 1mg before bedtime. It was getting to the point where I couldn’t sit at my desk,concentrate or stay awake, so I knew it was time to make a change.

      I purchased a supplement online that was touted to work for RLS & it did. It was very expensive, so I took it to a local health food store & asked if they had anything similar. They recommended Solaray Magnesium 200mg (magnesium oxide). I take 1 capsule a few hours before bedtime. If I forget I have to take 2, but it has negative effects on my gastro system ;) Others can tolerate more. The nutritionist suggested I start out taking 2 & see how I tolerated it. It can also be taken during the day. They also told me that you need to buy a high quality one or it doesn’t work. A bottle of 100 capsules is between $6-8. You can find it online too. Seriously, this stuff is a miracle for me.

      Other than that, I eat very healthy, avoid sugar, caffeine & chocolate. I also exercise every other day. Nothing complicated… I just learned to listen to my body. I noticed a pattern after I ate specific things & that my legs were worse.

      I really hope this helps. Let me know if you have more questions :)

      • avatar Kim Waller says:

        Hi can I sk what is this amp that everyone jeeps mentioning? ! Thanks

        • avatar Lynn says:

          I’m sorry Kim, but I’m not sure what you’re asking about?

        • avatar Jenna says:

          I think if we type an ampersand “&” – some devices are changing it to “amp”

          My smartphone and gmail is doing that.

          :)

          Silly technology trying to confuse us!! Ha ha

          Soooooo glad to see more advice on this blog post.

          Has anyone lost weight after stopping Mirapex??

          • avatar Lynn says:

            Jenna,

            I lost weight. I think it was because the compulsive urge to eat was gone, I finally could sleep a full night & I had more energy to exercise.

  71. avatar Kim Waller says:

    Hi thanks jenna I get it now its the way some devices are writing .Thought it was some new restless legs condition it gave me a laugh!

  72. avatar Kimmie says:

    Ok that was funny. Thanks Lynn that answers my questions. I too have not had any caffeine and I am eating earlier and not eating any sweets at all today. I got a 2 hour nap in and will try to stay up later tonight to see if that will help me sleep through the night. Wish me luck. I too am losing weight hope it keeps up. Talk to you all tomorrow, rest well.

  73. avatar Kimmie says:

    Whew well finally got some sleep last night from about 2 to 7 30 which is the most at one time. I did make the mistake of drinking some tea yesterday, so it really took a long time to get legs quiet to go to sleep. I ended up getting on the floor folding my legs underneath me and waited for them to get tired and then went to sleep.
    I did the usual 2 hylands restful legs, 2 tsp mustard, vicks, and tylenol. I really think it was the tea. No caffeine today and see how tonight goes. Have a good day all, stay warm Kimmie

  74. avatar Kim Waller says:

    Hi kimmie I was wondering how you wete doing glad you got 5 hours or so sleep in one go! How bad were your legs prior to starting on mirapex compared to how they are now you have come of it? I coping on low dose have few wobbles but getting reasonable amount of sleep.I am in the uk anf the doctors here have no idea about withdrawal of mirapex! Good job we have sites like this one to share info.Are you in the uk? Maybe they are the same all over.Well good luck for tonight.Keep in touch kim

  75. avatar Kimmie says:

    Good job Kim, glad to hear you are doing well. I am in the United States. No as far as I know the doctors dont know much about it either. My legs started this about 20 years ago so I dont remember how bad they were. The medicine worked for a lot of years but the last 7 years have gone done hill. I was plagued with a fog feeling in my head that doesnt go away. I am sure it is this mirapex that caused it and hope it goes away over time. My legs were getting sharp pains in them after I would take the mirapex for the last 2 years, and worsening lately that is why I quit. Also high blood pressure, no energy and not sleeping. I am concerned to find a way to deal with this on a daily basis. Dont know yet what that will be. We sure have to give up alot because of R.L.S it is a real chronic lifetime problem. I will keep digging though as I feel like it. I never want to get back on it , but I need a solution to the r.l.s. that works so that I can get sleep every night. Keep searching and keep on trying. have a good day. Kimmie

  76. avatar kimmie says:

    Had a good nights sleep last night. I only used vicks on my legs and when they acted up I curled them under me and lay on them again until they stopped. It worked 2 nights in a row. Still drinking lots of water.
    One thing that is weird, I have humming in my ears. I think it is related to the cold or allergies mabe. I had the vertigo last night and nausea with it . This morning still have the humming but no vertigo or nausea, who knows! I slept from 8:30 to 9:30 then 11 to 5:30 yeah! Hope you too had a good nights sleep. Kimmie

  77. avatar Kim Waller says:

    Hi kimmie how you doing? I doing ok just up once last night my silly left foot was playing up.Do you get the sensations sometimes just in feet? Hoe ridiculous is this condition! My husband made me laugh said theres a film titled my left foot! Hope you coping klmx

  78. avatar kimmie says:

    Hi Kim, I am so glad to hear you are doing well. It is weird isnt it sure wish we knew exactly what causes it and could fix it , mabe some day. I have figured out that the malasses is making mine worse so no more of that. So I have been walking some every day and streatching. I have been taking the magnesium every day, and the hylands restless leg at night as well as a tylenol, and vicks on legs. I usually take a hot shower or bath to get legs to relax. My husband also rubbed my calves a few nights in a row to get them loosened up they were tight. So yes, doing well too. Last night got alot of sleep. 8-1045 then 11 to 12:45 then 1:30 6:30 almost 10 hours Man am I thrilled! woohoo. How much sleep are you getting? What changes are you noticing? Are you still tappering off of your doses? Have you tried anything that has worked or not worked? Take care and have a great day Kim. Kimmie

  79. avatar Kim Waller says:

    Hi kimmie glad you doing so well.I am now only taking 2×0.088 of mirapex a night now so a quarter of my original dose and doing ok.Some probs but overall manageable.I will probably not reduce any further now until I have my overactive thyroid more in range.I find wearing the support bandages helps but rather a strange look for bed.Eating lots of bananas as heard potassium can help.Warm baths seem to be the best when you at your wits end.Well its midmight here so bandages on! Good luck kim

  80. avatar kimmie says:

    Kim, I tried some different things last night and either the combination or one of them worked all night. I had to share. I used magnesium oil spray on my legs 2 times in the afternoon and then after dinner. I also take magnesium every day now. I also drank tonic water with quinine in it for dinner . Then I took an epsom salt bath and scrubbed my legs with wash cloth and soaked. It worked!!! All night!!! The directions on the epsom salt said 2 cups per bath so I put about that in tub after I had dissolved it in water bowl of hot water. When I get enough sleep I will try figuring out which one or if it is the combination that worked for me, and I will let you know. I have had the flu so I have been suffering 2 fold. I am about over it now so like I said if I can get some good sleep I will try figuring out which one of these is the cure. In the mean time I got the magnesium oil spray at the health food store it was high but if it works its ok and it is supposed to last a long time. It made my skin feel prickly so that is why I decided to do it early and then wash it off after it had plenty of time to absorb into my skin and then I did the epsom salt bath. Please try the bath and let me know what it did for you,. Have a wonderful day and a sleepful night. Kimmie

  81. avatar kimmie says:

    Hi everyone, Wow I got off of Mirapex December 27th, cold Turkey. It has been 21 days . I really thought I had turned a corner. I had stopped caffeine, most sugar, and had a really good night as you can read above. Well last night I had another night from Hell. Nothing I did worked for my legs. I had thoughts of suicide and I even got desperate enough to hit my calves and upper legs to get them to stop. I am rethinking the whole cold turkey thing as mabe this shit is more dangerous than I thought. I am very angry today and fearful of tonight . I managed to get 2 hours of sleep today and will drink lots of water today and walk as the weather is pretty good. I will let you know what happens tonight. I urge anyone on this drug( Mirapex) to seek professional help when dealing with this drug. Thank you Kimmie

    • avatar Lynn says:

      hi kimmie. i would definitely see a doctor if i was you. this isn’t something that you should have to figure out on your own. like i said before, mirapex can have a rebound affect & coming off of it is like trying to stop taking cocaine (or so i was told by my doc). you can do this. if i was able to get off of it anyone can. don’t give up. you’re not alone! i’ll be thinking of you.

  82. avatar Kim Waller says:

    Hi kimmie so sorry you have taken a turn for the worse after doing so well for so long.Please get some help from a professional help to decide where to go next.Maybe you want to carry on trying now you have got so far or take the tiniest dose to see if you could manage on that.I am no doctor but for me a timy dose is keeping me sane.The choice is yours kimmie not mine you know how much you csn take, You have been so helpful on this site.What about a mild sleeping tablet to take just on horrendous nights? That is my future plan.Whatever you decide we will support you because……..we understand exactly what you mean.There have been times when I have thought I cant take it anymore but you have shown yourself tl be a brave lady and you will come through whichever way you decide.Take care kimmie .Let us know how tonight goes.kim x

  83. avatar kimmie says:

    Thank you ladies for the encouragement. I slept last night by some miracle of God. I feel better today for sure. Lynn how do you cope since you have been off of mirapex. How long did it take for you to get past the recurring effects of this hidious drug? What are you doing now at night for your legs? I have never met a doctor so far that knows anything about what to do for r.l.s. they just fill prescriptions. Any suggestions on what kind of doctor to see for coming off of Mirapex or treatment for the r.l.s.?
    Thank you for the encoragement and you all are very brave too. I have no choice but to keep chugging along but I need some more answers, take care Kimmie

    • avatar Lynn says:

      hi kimmie. there are only a few things i have to do to cope with my RLS. i take magnesium every night at least a couple of hours before bedtime (the key is to take it before your legs have the chance to feel restless), i avoid caffeine & sugar and exercise every other day. since i weaned off of it over a years time & i was taking such a minute dose by the end i didn’t have any effects towards the end. i weaned off by cutting my doses in half, then quarter, then i took it every other day for a few months while also taking the magnesium during the day & at night.
      i ended up seeing a pulminologist who specialized in sleep disorders. if i was you i would start calling/researching doctors. ask if they specialize in RLS & if they don’t ask if they know someone who does. you will find someone eventually. i would also try natural/ health food stores. at lot of times they have someone on staff that can make suggestions. another route you could try is a naturpathic doctor.

      don’t give up! keep us posted on your progress :)

  84. avatar Kim Waller says:

    Hi kimmie glad you slept well you needed it.I have never seen a consultant anout my rls but other people have said they have seen a neurologist.Again from others I have been told it takes about a couple of months to get back to a pre mirapex state.As I am still on a tiny dose it would be better info coming from someone who has actually done it good luck for tonight kim

  85. avatar Kim Waller says:

    Hi kimmie how you doing? Its my turn tonight to be driven mad! Middle of the night here and I cant even sit never mind go to bed.Its my left arm and leg mainly my leg.Was starting to feel optimistic now my thyroid levels are improving, was ready to drop my dose down again of mirapex but oh no rls decides to reach new levels.So so tired and fed up with it and still my family and friends think its a joke! My husband is snoring away so cant even get in bath incase I wake him up.Dont know what to do with myself.Wish I had never heard of mirapex.Hope you have a better night kim

  86. avatar kimmie says:

    Kim so sorry you had such a bad night. I know it it so frustrating when everyone else is sleeping and you have the crawlies and jumpies. I too wish I had never heard of Mirapex, although when I started it I thought it was a miracle. I have been sleeping the last 3 nights and want you to try something. Try the magnesium and epsom salt in a bath. If you dont get magnesium oil to spray on it will take longer to get into your system. I also while in bath rub my legs with a rough wash cloth or something that has a little umph to it. Then hop into bed, (in the other room) where I know I wont worry about waking him up and he wont worry about waking me up. 3 nights in a row amazing. I only got up once last night to go to bathroom. Please give the epsom salts a try I use 2 cups epsom to the whole tub of water and take magnesium too. Have you tried putting vicks vapo rub on arms and legs when they act up? Let me know I sure want you to get some sleep, so sad you had such a yucky night Kim, Keep trying we can whip this thing together…. Kimmie

  87. avatar Kim Waller says:

    Hi kimmie thanks for your reply and idead.I have done my shopping list …epsom salts, mustard, magnesium tablets and oil, vicks, tonic waterand hylands rls tablets so will head off to get them all in the morning! Hope you still doing well.I read on a uk site a new tip some people said worked well…rub dove handwash lotion mixed with drop of water on legs and leave to dry, so btter add that to my list.Good luck..kim

  88. avatar kimmie says:

    Hi Kim, Yes I am still doing well! Sleeping every night. I am drinking tonic water 1 glass during day and for now taking the magnesium tablets 1 per day. spraying the magnesium oil spray sometime during day, and then taking a bath in 2 cups or a little less of the epsom salts. I rub my legs down with a wash cloth that is kind of rough or a scrubber for skin. I sometimes take the restless legs and sometimes motrin but some nights dont need either of those. I am so excited it is still working. Glad to hear you are trying them too. I hope so much that it works for you too my friend!! Let me know, Kimmie ( it will be 5 nights if tonight works out! Yeah) it just has to work for you….

  89. avatar kimmie says:

    Kim have you been able to get the things you needed? How did they work. I am up to 5 nights of sleep. I only woke up 2 times last night. I am just exhausted by the end of the day, I sleep about 8 to 9 hours a night only waking up to get a drink etc. My legs were trying to get started last night so I stretched them in bed and rubbed vicks on them and went right back to sleep. I am holding my breath that this is the cure. I want to keep at the same routine for a month and see if it continues. I hope it does because I got a job today very part time, but if I keep feeling better I will ask for more hours. Please give me some good news from you, or let me know where you are in your process. Thanks Kimmie

  90. avatar Kim Waller says:

    Hi kimmie I couldnt get everything I needed locally so have been into the city todsay and got everything except the hyland rl tablets will try and get them on line so tonight is the trial night! Are you still doing well? I really hope so. Kim

  91. avatar kimmie says:

    Kim, I am doing so well I could jump up and down with joy! Thanks for letting me know that you have your stuff and are beginning. I really want this to work for you! We can help so many other people if this continues to work. Let me know how it goes and exactly what you are doing. I am so thankful for this site and that we can help each other. I actually have been getting enough rest that I drove myself to the city and back which is 4 hours total and didnt get tired and my legs did not give me any trouble. I am going to the city again today and will be coming back at night which usually gives me trouble, so it will be another good test. In 2 days it will be a month I have not had Mirapex and I have slept well for 7 days today. Halleluia. I have been able to get some things done during the day, and still have energy to cook and do the dishes after I am through. I know that may sound silly but I was really that bad. No sleep is not healthy and drains me to where I didnt want to do anything. What a change, I cant wait to hear how you do. My mom has been on mirapex forever too, she went and got things to get started too. She is going to see how it works and then taper off like you. She lives alone and was too afraid to go off of it cold turkey, but I am encouraging her to try the things we are trying and give it some time and see how she does. She has swollen lower legs and I am worried about her heart and all of the fluid collecting in her legs. It does things to us that we dont realize until we are off of it. Nasty drug!!! My shoulder hurt for years and it went away, as did my high blood pressure, and my hair is growing now instead of falling out. No more chest pain, and no more kicking legs or arms. I could just cry with joy right now, I am so happy to be on the road to normalcy. Can’t wait to hear from you, Kim. If anyone else is on this site please leave us a message we would like to hear your story and see if we can help you too. Thank you Kimmie

  92. avatar kimmie says:

    Things to do to stop restless legs naturally.
    1. Drink tonic water with quinine each day. ( real cheap too)
    2. Take magnesium once a day.
    3. Get magnesium oil spray and spray legs once a day. ( health food store )
    4. Take a bath in epsom salt at night before bed. ( i use 2 cups per bath )
    ( I also rub my legs firmly while in tub and get the tightness out of calves)
    5. I also took Hylands Restless legs pills under tongue for the first 3weeks of getting
    off of Mirapex. Now only some times when they are feeling like they might act up.
    6. Vicks vapor rub also works for any aches or pains you may have in lower back or hips that may cause legs to be aggrevated. I rub it on my calves if they start feeling tense in the night and go right back to sleep.

    Any one who has a sleep disorder, it will also aggrevate your legs. If you snore or have sleep apnea you need to get help for those things as well. I have sleep apnea and use a c-pap machine at night. I have been off of Mirapex for 1 month and it was rough cold turkey but it was worth it now. Please give these things a try and if you have any questions or comments , we check this site all of the time and will answer your questions as soon as possible. Thank you and good sleeping. Kimmie

  93. avatar Kim Waller says:

    Kimmie can I just clarify do you get into bed straight away after the bath? Thanks

  94. avatar Kim Waller says:

    Lynn daft question but not very computer savvy how did you add a photo and could I do it now?!

  95. avatar Jenna says:

    Hi gang, Jenna here, the ‘owner’ of this site. I talked about closing this site and moving the post over to a free website. But, so many people view this post and a few others.

    Request/favor – if you’d be willing to donate a little amount to me, I’d appreciate it so much. This site costs $10 a month to keep up and running. That is the hosting fee per month.

    If you don’t want to donate, please ignore this post. If you could spare some… Pls send a donation to my Pay pal account – Pheebs3211 @ charter. Net

    Without the spaces.

    Thank you so much – Jenna
    JAScribbles

  96. avatar Kim Waller says:

    Hi jemna yes I would like to send a donatiom as this site is a lifeline for me and others.As I am im the uk to be able to send to your paypal account it says I neef an email address. I think you will have accesd to mine from when I signed up so if you wamy to send me yours I will arrange a payment.If you wuold rather not that is fine.Is there any other way to make a donation?

  97. avatar Kim Waller says:

    Hi yes yes yes it worked!!! Thankyou sooooo much kimmie for your regime.Even better I took half a tablet less so now only on 1 and a half tablets a night and they are only 0.088 so tiny amount.I think it was the magnesium spray that made my legs feel more relaxed .My left foot was a bit silly at times but much milder than usual and I put on vicks and went back to sleep.Wait for it I slept 8 hours straight through! I will keep regime up on this reduced dose then when my hylands restful legs tablets arrive which are being shipped so could take 2 weeks I will go down to just one tablet.I know there will be blips along the way but I feel more optimistic than ever about getting off this drug.It has causef me to blow up like a balloon! Hope you still doing well kimmie and I will post again in few days time with an update.Good luck with your new job.Take care kim

  98. avatar kimmie says:

    Hi Kim, Yeah! I am so glad it is working. To answer your question, I do go to bed and sometimes watch t.v. after my epsom bath. I am so excited to hear this is helping you too. We will keep it up and let each other know how it goes. My mother has started hers and I will also get input from her. Have a wonderful day. Kimmie

  99. avatar Kim Waller says:

    Hi kimmie, How are you doing? Are you still off mirapex? Hows your mum doing ? I am down to one tablet now but camt get amy lower! Still have some bad nights but generally coping.i have lost weight since dropping dose so really pleased about that but still have fluid retention, The magnesium tanlets and s
    ray def help and I keep hylamds tanlets by my bed.Tried knocking ogf my last mirapex tablet but couldnt cope but at least I have cut down by two thirds so good progress, Do let me know how you are doing ….l kim

    • avatar Lynn says:

      Hi Kim! Have you tried taking it every other day and taking magnesium in it’s place on the off days? That is what I did when I got to the lowest does & was weaning off of it. I took it like that for months & it really worked well for me.

      • avatar Kim Waller says:

        Hi lynn am a bit scared I think of stopping all together makes me so ill pacing for days.I will try taking half a tablet every other day plus magnesium on that day and one tablet the next.That could be next step fot me.Thanks for reply and support.

        • avatar kimmie says:

          Hi Kim glad to hear from you again. I am still off of mirapex yes. I am still just taking 250 of magnesium a day and then drinking tonic water each day and then the magnesium spray on legs, epsom salt bath at night and then if they bother me at night I spray again and apply vicks too. Still seems to be working. No caffeine at all and not eating after 7 pm and drinking water lots. I have been walking daily too. I am glad you have been doing as well as you have, good luck Kim you can do it. My mom tries only hit a miss of my suggestions so cant use her for an example, but she is trying . Have to start somewhere right. Take care, Kimmie

  100. avatar Susie says:

    My Dr. has me weaning off of Mirapex and onto Horizant……..starting in April at my choice. I’m petrified! lol It’s a four week weaning process, and I’ll stay on the Neupro patch that I also use, and he is starting me on the Horizant right away, which he usually does not do. My previous dr. said that once I got augmentation from the Mirapex he wouldnt know what to do for me. The new Dr. said he’d know what to do….but I wouldnt like it. Well, this is his plan and he’s provided me with alot of worse case scenarios, but I’m hoping with the Horizant and Neupro, maybe it won’t be horrible. Yet, I’m petrified it WILL be horrible. I was on Requip before the Mirapex. Ugh.

  101. avatar Susie says:

    Oh, and ironically, I picked up Magnesium today. Health food store recommended magnesium with calcium.

  102. avatar Kim Waller says:

    Hi Susie, I am weaning ofg mirapex too.I would think if you are staying on neupro patch and starting on horizant you should be okay .Did your doctor say you could have problems? Good luck with it x

    • avatar Susie says:

      He did warn me that my experience might be awful. He of course says everyone is different and no one will know until I start. I take more Mirapex than he says he ever would have prescribed (dose is from the old dr.) and I think that is his concern. I take .25 mg. around 3, and 1.5 mg. at bedtime. With the Horizant and the Neupro I too am hoping I’ll be okay, but yeah, I am petrified at the same time. So many people say it’s the worst thing they’ve ever been through. I set mid-April as my time to start weaning, and now I wish I could just start and get it over with. But since I may possibly need time off of work, my dates are set now. I’ve had a few miserable nights in the past, and I cant imagine having those nights over and over again. Best of luck to you too!

      • avatar Kim Waller says:

        Hi Susie,sadly my doctors surgery will not prescrbe neupro patch to anyone because it is too expensive! (I live in UK).They also wont let me have any othet dopamine agonist eg requip, horizant until I have been off mirapex for at least 6 months.This is because dopamine levels need to reset so as to delay augmentation.All this means I am having to do it cold turkey and its a nightmare especially as I have back and knee problems so the constant pacing is agony! Why are you coming off mirapex is it due to augmentation.? Best wishes

        • avatar Susie says:

          Yes, due to augmentation. I’ve been on requip, then Mirapex with constant increased doses, then added the Neupro patch somewhere in there and have had augmentation. Eventually I’ll get off of the Neupro as well. However, my understanding is that the above 3 are dopamine meds. and Horizant is not. So why cant you get Horizant?? I feel for you. I hope you are not miserable. I like that there is alot of good advice on this site….I think I’ll be getting some magnesium spray and investing in a few jars of Vicks. I usually just pace and rub my legs and when it’s really bad, I go a little crazy as well. How much are you taking now? I see this has been a slow progression for you. Susie

          • avatar Kim Waller says:

            Hi susie, I have tried gabapentin but it didmt work for me.I think Horizant is similar, I do have pregablin though which I finf a bit better than gabapentin.I now take only one 0.088 tablet a night which is the lowest dose so I have come a long way.Do nt get a full nights sleep but do manage a few hours.Yes the magnesium oil helps, Do let us know how you get on, try and remain positive it can be done, Wishing you well.Keep coming on here for support and ideas.

  103. avatar Kim Waller says:

    Hi susie, I have tried gabapentin but it didmt work for me.I think Horizant is similar, I do have pregablin though which I finf a bit better than gabapentin.I now take only one 0.088 tablet a night which is the lowest dose so I have come a long way.Do nt get a full nights sleep but do manage a few hours.Yes the magnesium oil helps, Do let us know how you get on, try and remain positive it can be done, Wishing you well.Keep coming on here for support and ideas.

  104. avatar Kim Waller says:

    Any advice/experience? I am now off mirapex! Having very painful neuropathy symptoms in feet, lower legs and hands.Like hot needles and burning pains.This is worse T night and disturbing my sleep. Could mirapex have been masking this? Has anyone else had peripheral neuropothy? Different to rls.Concerned .Thankyou…kim x

  105. avatar Susie says:

    Hi Kim, wish I could help you. Did you get any answers about your neuropothy?
    My weaning has been going okay. First few weeks, no problems at all, but Week 3 started having issues. A few nights of pacing, and I know I am not sleeping well through the night. I’ve taken advantage of some of the tips on here and rub my legs with Vicks and wear tight socks at night. Several what I call ‘Stupid days’ where I am spacey and cannot focus. One night from hell, but what I am concerned about is the achiness. I have had alot of body aches from the meds themselves, and have not been sure if it’s from the Mirapex or the Neupro, but the body aches have been increasingly worse since the weaning. Is this common? Ugh, does it go away? Thanks for any comments. Susie

    • avatar kimmie says:

      Hi, I have been off of Mirapex since December. It does cause flu like pain in different parts of your body. It can also cause foggy thinking and depression. it is apparently a very powerful drug, and takes lots of time to get all of it out of your system. I just don’t eat after 7:30pm. Gave up caffeine, and sweets late. I use the magnesium before bed and also use magnesium oil spray on my calves which are what jump, this settles them so I sleep well. I don’t have any jumping during the day anymore and can sleep at night. Occasionally I have problems, and just squeeze the muscles that are bothered, and rub on vicks. Hope this helps

  106. avatar Lynn Minney says:

    Susie,
    When I was weaning I found that Mirapex masked a lot pain that I had prior to starting the medicine. I had lots of nerve & muscle pain in my back & right leg. That is something I had to address in order to sleep & that is why I take magnesium every day. The muscles in my lower back/piriformis are very tight put pressure on my sciatic nerve. If I take the magnesium my muscles relax & my leg is fine. I suspect this was the issue all a long & Mirapex worked for a while to cover up that nerve pain.

  107. avatar Kim Waller says:

    Hi susie, thanks for replying no I didnt get any feedback on neuropothy pain but am now under going tests via my family doctors. Glad you doing ok and yes I did feel more achey as I weaned off mirapex but I put it down to lack of sleep and lots of pacing. its certainly not an easy med to deal with! You are almost there now hopefully the patch will help you, Take care…kim

  108. avatar Susie says:

    Thank you all for your input. I’d describe it as flu-like general body aches. In reading ‘up’ a little bit I see others experienced that also. Not fun. I definitely also have the foggy thinking. Dread bedtime as I never know what it will be like. It’s 9:30 pm right now and I feel like it may be a decent night….still have the body aches but dont feel any leg twitching coming on. It’s weird because this is not like the augmentation or previous RLS I’ve experienced. My legs actually feel heavy and painful at times, but not as much of the ‘need to move’ feeling. Some of that, of course, but not like I was expecting. Not like this overall experience though, that’s for sure.
    Kim, I hope your doctor is able to help you!

  109. avatar Susie says:

    Well, the nights from Hell have begun. I am on night five of incessant pacing with intermittent attempts to sleep. Start out in bed, end up downstairs pacing and trying to fall asleep on the couch which is where I usually end up falling asleep around 3 am. The body aches had gone away briefly but are back full force. I just turned 52 and feel like I’m 80. Muscles ache, joints ache, and the RLS in the evening and night are horrible. More painful than previous experiences. So they hurt and need to move. I’ve tried many of the hints I’ve read from above but they dont seem to help me so I’ve stopped. There are two things I cannot do….I dont like baths and am afraid if I did take one in the middle of the night I’d fall asleep, and I cant stop the eating at night. In fact, I also had alot of weight gain with the Mirapex and/or Neupro and was hoping some of that would come off during this ‘wean’, but instead as I am pacing I find myself eating….grabbing anything easy….crackers, M&M’s, whatever is quick to grab as I pace. I know I shouldnt of course but when doing it I cant help myself. Last night I did fall asleep while pushing my feet hard in a rocking chair. That’s not working tonight, so although it’s 2:25 am. I thought I’d look for a few more tips on this site. Will get some magnesium spray tomorrow, and am about to have a spoonful of mustard. Found out crying doesnt help, ha ha. I know others have had it worse and I will get through this, but man it’s not easy. And although I pleaded with my Sleep Dr. to get off of the Neupro patch at the same time, he said we’ll wait on that. Will I go through this again then? Ugh. I’m on a 3 day vacation from work, and am not sure how this is going to go once I go back. Work 8:30 – 5, M-F which doesnt leave me much time to catch up on sleep. Sigh. Miserable, Miserable, miserable. Wanting to cut my legs off below the knee.

    • avatar Kim Waller says:

      Oh Susie I am so sorry you are suffering like this and I understand every word you say.I weaned off much more slowly than you did though dropping by tiny amounts plus I wasn’t on as much to start with.Are you in rhe USA? At the end I used very strong painkillers to het me through and as I have back pain and arthritis the pain doctor okayed them for me.I have been off for 4 weeks now but according to the expert it takes 2 months to get back to where you were before you ever started on the dopamine drugs.I find heat helped me and would cover my legs in hot water bottles but I kmow others prefer cool . Really think you need strong painkillers to get you over this could you ask your doctor about some? I personally couldn’t have done it without them although others have done.Do you have a partner/family there with you to support you? Keep posting on here I will always reply.As hot baths containing Epson salts helped me_but only as long as I stayed in I had a couple of friends stay over who literally watched me in the bsth to make sure I didnt go under! I think work at the moment is impossible so you need to go on the sick.For goodness sake some have gone into detox to do this how can you be expected to work! Get to see a doctor asap and get some help.Are you completely off the mirapex now? What dose of the patch are you on? Thinking og you and so hope you get some sleep and relief soon.Maybe a few sleeping tablets? God bless .love kim x

    • avatar Kim Waller says:

      Susie meant to add thete is an excellent forum to discuss rls .It is UK Forum but has membets from all over the world many from USA. Go to healthunlocked restless legs forum. Or rls uk healthunlocked forum.You become a member but its free.It has lots of members anf you will get lots of support.I ho on every day and it has helped me tremendously x

  110. avatar kimmie says:

    Hi Susie, you can do it! don’t give up. It is really hard I know I did it too. No caffeine, or sweets late, or alcohol. Made mine worse if I did. It takes a while to get off of this stuff, it is real mean. I had to have some sleeping pills to retrain my brain to sleep after getting off of Mirapex because getting off of it keeps you awake and your brain gets confused on sleep times. I take 250 to 500mg magnesium every night and spray with the magnesium oil spray before going to bed. Also try some heat and deep tissue rubbing of your calves, which is what was the most troublesome area for me too. I would rub vicks or analgesic creams with some eucalyptus in it when they really aggrevate me. I still have issues but they are much better. It has been 5 months now and my routine is… eat before 7:30, no alcohol, no caffeine, no sweets after like 3 or so. Magnesium and spray calves before bed, and vicks if legs act up after that. I also found I can only sleep on a certain bed! Boy is this a mess or what, that may be why you end up down stairs because the bed bugs your legs. I hope this helps, keep trying but if it gets to where you are missing too much sleep you need to ask for something to make you sleep just until you can get through the worst of it, it’s ok because if you don’t you may end up with depression and not being able to sleep at all. Take care, kimmie

  111. avatar kimmie says:

    Oh one thing. I said no sweets after 3. I absolutely cannot drink alcohol or caffeine at all. Just wanted to clarify. Thanks

    • avatar Susie says:

      Thanks for that added tip. I certainly have refrained from caffeine after my morning coffee and rarely drink alcohol, but the sweets are a problem. I’ve got to toughen up and stop the eating…..after 7:30 or 8 sounds like a good plan. Thank you thank you!

  112. avatar Susie says:

    Thanks Kim, I feel like I’ve found a new friend :) Finally fell asleep after the mustard…did that really help? Or coincidence? I am in the U.S., and I will call my nurse today. I have it okayed to work intermittently if needed, but not sure how that will even work. I am usually ok in the afternoons. But the depression and anxiety have also set in. I struggle with those anyway, so this is just adding to it. Last night I felt like I couldnt breathe. I do have a husband and a twenty-some year old daughter who are very supportive and kind of ‘get it’ They have been rubbing my legs which is awesome, but I dont anyone really understands this unless they’ve experienced it. I truly do appreciate your comments and support. Susie

    • avatar Susie says:

      Oh, and to answer the question, yes as of Sunday night I am completely off the Mirapex. The medicine from Hell. So this is week five of my detox.

    • avatar Kim Waller says:

      Hi Susie have you had any improvements/sleep I really hope so I have been thinking of you.Did you call the nurse and if so have you had any help/advice? Dont worry anout coming off the patch yet take one thing at a time.Have you got any strong painkillers they do help. You are bound to be feeling depressed the lack of sleep is brutal. If its possible I would take sick leave from work and concentrate on weaning but naturally I dont know your circumstances. Wishing you well .sending hugs.kimx ps.if you want to eat then eat! It wont matter for a short period of time

      • avatar Susie says:

        Hi Kim! Well, I spent most of yesterday on a crying jag, but then miraculously I slept well at night. Today just tired and major aches and pains. I did call my nurse and I actually talked to the doctor. He and I agreed to take away the Neupro, but he increased the Horizant, doubled the dose in fact. He also recommends I do not work for about a month. What a sigh of relief. The stress of worrying every night if I was going to sleep well and then have to go to work was not good, plus he said when a person is going through this they are unstable. Too many ups and downs to count on being fully able to work. I should get official approval tomorrow.Also bought espsom salts and will try a bath when others are awake. Thank you , thank you , for your support!! It truly helps!

  113. avatar Susie says:

    And then last night………..one of the worst! Up and pacing off and on all night, and found myself sleeping on the LR floor at 4:20 am! Miserable. But oddly enough I wasnt very tired today, until after dinner. I laid on the couch, and I actually had the rls in my left arm. Ugh. Purchased 2 calf ‘cuff’s that have a massage action. Will try those tonight if needed.

    • avatar Kim Waller says:

      Hi susie, sorry you suffering but so glad you around as I a m having a terrible night , its 3 in the morning here and I was feeling so alone, in tears and then to hear from you..thankyou.Dont know whats gone wrong with me I was doing well until tonight.I am trying the living room floor thinking about a bath.I get it in my arms too when really bad.Hope thinhs get better for us both really soon.Its a nightmare…kim

      • avatar Susie says:

        Oh Kim, I am so sorry you experience that after doing so well! How are you doing these past few days? For some reason this time the email went into my spam and I only look at that every few days or I would have responded sooner. My leave from work was only approved for 2 weeks, with reconsideration after that. However, I do have sick and vacation time I can use til mid-June. Sunday night I was up until 6 am (Mon.) and slept til noon. Last night was better – I was up from 10:30 pm til 1:00 am and fell asleep on the floor. Funny what I think of as ‘better’ these days! This is how I ended up on the floor….I put a pillow on the edge of the couch and kneel on the floor by the couch putting my head on the pillow. This way I am kind of resting and can still move my legs. Sometimes I’ll fall asleep this way and then end up on the floor. Other times it’s horrible and doesnt work at all. I’m hoping you are doing better! You’ve been such a cheerleader for me to get better, I hope I can do the same for you!

        • avatar Kim Waller says:

          Hi Susie lovely to hear from you.Yes doing much better thankyou lucky for me it was just the one hellish night.Strange it came out of the blue and settled down again.Suppose it will happen from time to time. Was so funny though when I was on the floor in a state and middle of night and couldn’t believe it when your post came through suddenly I could feel you with me.Poor you though its going om and on for you.Hoe many nights off now? Do you think your dose of new med needs raising and are you taking strong painkillers too? You are doing so well to persevere all this time.I am going to start drodropping my painkillers at the weekend, The neuropathy much better only occasionally get it must have been reaction I think to coming ofg mirapex.Do you have an appointment with your doctors soon? Glad you got some time off work.Keep fighting we are all behind you.x

          • avatar Susie says:

            Hi Kim, sooo glad you are doing better. No painkillers….my Dr. doesnt do it that way. Last week he doubled the dose of Horizant. But that’s the day I went cold turkey from the Neupro patch also. I started the weaning off Mirapex April 6, and had a few difficult nights here and there, but it wasnt until about 3 weeks ago that things got really bad night after night. Funny that the time difference worked in your favor that night you were miserable! Glad to have helped you for a change! I can do this, but it suuuuure isnt easy. It helps to have people to discuss this with that understand.

  114. avatar kimmie says:

    Hi ladies, I too have problems still off and on. We actually purchased a new mattress because I was having to sleep in the guest room because I guess the other mattress bothered my legs. Good Grief. I have the problems in my arms too. If I rub vicks on them and gently squeeze my arm muscles it does stop after just a few minutes and then I can go back to sleep. If I start missing nights of sleep in a row, I take the over the counter non habit forming Nyquil for sleep only and it really works! One night my legs did get cranky and I took the spoon of mustard and it did work, it is so strange… How did the arm compress things work? Also do either of you have a feeling of brain fog, or are you doing strange things like missing steps, falling, dropping things? I am just wondering because I am. Thanks Kimmie

    • avatar Susie says:

      Hi Kimmie, I definitely have brain fog, and last night I didnt really have any leg or arm issues, but I just felt so uncomfortable in bed. I could feel every piece of my pajamas where they were touching my skin and had to get up and walk around a bit. Then slept on the couch from 1:30 am to 10 am. Woo hoo! I got alot of sleep anyway. But today I’m weepy and feel very foggy. The leg massagers do help! Bought them on Amazon. They are irritating if worn on my shins to the front, but if I turn them on low (3 speeds) and turn them to the back on my calves they are nice and calming. Not a miracle worker, but they help.

    • avatar Kim Waller says:

      Hi Kimmie great to hear from you.Suppose rls will always rear its ugly head but at least better ofg mirapex than on- up to now! But still early days for me.Yes do get brain fog my hubbie convinced I am getting dementia! Worth getting yoir thyroid levels checked too as I know like me you have thyroid probs and that can cause brain fog.Take care,, kim x

  115. avatar Susie says:

    Hi, up at 5:10 am here, and went to bed at 11:30, was up at 12:00, 1,2,3, and then 4:30. The major RLS has gone, where I was up pacing for hours at a time, but now I am having troubles sleeping. Cannot get comfortable (I’ve thought about a memory foam mattress topper) in bed so end up back on the couch where i’ve slept for the last month anyway. Still cant sleep. During the day I am foggy, a bit crabby, and cry aLOT. Still have the intermittent body aches, and instead of the major RLS, my legs actually hurt from the knee down, and sometimes have the pain and a tingly feeling. Sometimes RLS and I pace but not for long periods of time. How long does this go on??

    • avatar Kim Waller says:

      Hi Susie, according to a rls expert it takes 2 months to get back to pre dopamime agonist state.Sorry you struggling but you have done sooo well getting past the major withdrawals. Strange but I started with the tingling and in my case burning when I came off so maybe its a reaction to withdrawals.I would say its time now for an appointment with your doctors/neurologist to assess your progress and decide where you go from here.Is the gabapentin the right new treatment for you, does the dosage need changing, your emotional health, the body aches etc all these things need discussing.Everyone is digferent, hot water bottles on my legs/feet help me. Yes I think getting back into sleeping is often a problem in these circumstances maybe a short course of sleeping tablets would help at this stage.Again something to discuss with your doctors so make an appt.I couldnt have done any of it without strong painkillers so maybe something like tramadol needs adding to the mix, dont think personally gabapentin alone is up to the job.Take strength from ehat you have achieved and keep coming on here for support, this will probably have been one of the hardest things you have ever done but you have done it you are off dopamine, so give yourself some credit for that, spoil yourself a bit and now its time to regroup with your doctors and decide whete you go from here, sending hugs…kim x

  116. avatar kimmie says:

    Susie, I think Kim W. is definately right. For some reason this drug M. causes us to lose the ability to sleep. My doctor gave me a sleeping pill to take for 2 weeks to retrain my brain to sleep. It is quite serious. I am so glad you are off of work. It is truly a side effect for sure and it needs attention, I havent talked to anyone who could sleep without help. I take the magnesium 250mg at night before bed, and use the mag. oil spray and or vicks on my calves. What we have to remember is that we will probably always have the r.l.s. but we learn what things set it off and avoid them! I have been off of it since December and experienced everything you have and are, but it is better and I use over the counter nyquil because it is not addictive, but at first I had to use the presciption sleep med. because I was very depressed and losing it from lack of sleep. Please don’t wait it makes such a difference to use this for a few weeks until your brain sleeps on it’s own again. We are here for you, take it easy you are going to make it and sounds like you are in good hands. Kimmie

    • avatar Kim Waller says:

      Hi kimmie, been meaning to ask did you get well enough to do the part time job? Yes the depression seems to be part of the experience when you are severely sleep deprived it is bound to be.6 eeeks on the depression for me has lifted but still a bit flat and tend to not be enthusiastic about much bit not crying now! Hopefully now I am sleeping well will get back some get up and go.Take care,? Kim

  117. avatar kimmie says:

    Hi Kim, No I didnt end up taking the job, but I am sticking to a routine at home. I start by walking every morning and then I work on a project, do some cleaning, and organizing. Basically I make myself keep working on something big or small. I don’t think my mind is ready for a job yet, but I feel better each month. So there is always hope that I will get all of my mental abilities back, I can definately tell the difference from one month to the next. Feeling good to be getting back to myself. Take care, Kimmie

  118. avatar Susie says:

    Last night I slept from midnight to 8:30 am in my own bed, instead of the couch or a combination of the two! I wore the calf massagers on low for the first hour or two. Felt great when I woke up for about two hours – I stupidly thought maybe I was instantly over this….ha ha ha! ….but then started feeling down and progressed downward from there with the depression and irritability. Also, now have a numbness/tingling in my fingers on both hands all day today. Did either of you have that at all? Could it just be the whole neurological system is screwed up from this withdrawal? Calling my Dr. tomorrow for an appt. or to talk with him this week as although I did get one more week of ST disability, they want more feedback from the Dr. in case I need more. This is sooo not fun. Really, it’s just so awful.

    • avatar Kim Waller says:

      Hi Susie, Hope your improvinghave you seen or spoken to docyor yet? Yes yoi will see in my posts that I had pins and needles etc im my hands and feet because I thought it was neuropothy.It is easing now so could well be as you say a neurological mix with coming off mirapex.You also come off neupro so probably be worse for you.Try and get some good pain meds.Yes I akso got lots of aches and pains too.I wasnt particularly depressed though, I was kind of flat and cut myself off from people a bit but I wasn’t crying so hopefully your doc can help you with this.Take care, keep in touch ..hugs .kim

    • avatar Kim Waller says:

      Susie meant to say would recommend you join up to…healthuncut restless legs forum lots of knowledgeable people on there x

    • avatar Kim Waller says:

      Sorry meant healthunlocked

      • avatar Susie says:

        Finally called my doctors office yesterday. My sleep dr. doesnt believe in giving out the sleeping pills or pain meds. He does feel I need another month off of work, and re-added the iron pills I had been taking. Also, he advised me to take the Horizant pills later in the evening, and made sure I was taking my clonazepam. I do also take Magnesium with potassium, and tonight will add Melatonin. I had forgotten we even had some. I use the Vicks, in fact the other night I put it on my legs, and thought why not put in on my other aching joints, and I swear most of my body was covered in Vicks! My hands, my elbows, my hips. I have been wearing my calf massagers to bed lately, but still get the RLS about an hour to hour and a half after I’ve gone to bed. Kim, I have read healthunlocked! Very interesting questions and comments on that site. I just havent ever ‘signed in’. Thanks for sharing that with me. I just had no idea this ‘weaning’ process would kick me in the butt like it has. I feel like I’ve lost the month of May, barely go outside and only leave the house with someone. I expected the RLS and a bit of sleep deprivation, but not like this, and not the other symptoms. Thanks for listening :)

        • avatar Kim Waller says:

          Hi susie, thanks for tip about the push cush I have found it on amazon.Wonderimg ig pushing on my hot water bottle might be a similar sensation.Glad you found healthunlocked.No way are you ready for work yet so glad you been given more time off.Dont know how system works in USA but isnt thete a sort of primary care doctor who could prescribe some painkiller or a pharmacy to get codeine? Think it is unfair to expect you to cope without! Did you try hot water bottles? I know its a harder process than people realise I didnt want to leave the house, had no motivation to do anything but slowly its coming back.I have got to decide what treatment to use for long term management either stay on paim meds or try something else but omly yhe dopamine or anticonvulsant to chose from really.If you go onto http://www.rlshelp.org you can actually send an email to a World rls expert and he eill email back free of charge.He has helped me alot.Good luck…kim ps I am p1pp1ns om the other forum x

  119. avatar Susie says:

    I also use a pillow that you inflate just partially and push it with your feet alternately when sitting. I’m using it right now, and I’ve found it helps with milder RLS episodes, or if I just cant pace anymore, I’ll sit and use it. Its’ called a Caire Cush, although I thought the packaging said Push Cush. Just a tip.

    • avatar Kim Waller says:

      Hi susie, thanks for tip about the push cush I have found it on amazon.Wonderimg ig pushing on my hot water bottle might be a similar sensation.Glad you found healthunlocked.No way are you ready for work yet so glad you been given more time off.Dont know how system works in USA but isnt thete a sort of primary care doctor who could prescribe some painkiller or a pharmacy to get codeine? Think it is unfair to expect you to cope without! Did you try hot water bottles? I know its a harder process than people realise I didnt want to leave the house, had no motivation to do anything but slowly its coming back.I have got to decide what treatment to use for long term management either stay on paim meds or try something else but omly yhe dopamine or anticonvulsant to chose from really.If you go onto http://www.rlshelp.org you can actually send an email to a World rls expert and he eill email back free of charge.He has helped me alot.Good luck…kim ps I am p1pp1ns om the other forum x

      • avatar Susie says:

        Hi Kim! I’d bet your hot water bottles would work in place of the Push Cush! Great idea. I have not bought any hot water bottles, simply because I feel like I’d have to strap them on and pace with them. Do you sit with them on when you have rls and it works? I have sometimes used this rice bag that you put in the microwave to heat and put that on my legs, but our microwave died recently and we havent had a chance to pick up a new one. It relieves me to hear that you also had the issues of not leaving the house, etc. – not that I’m glad you went thru that but it makes me feel a little less freaked out about it. The calf massagers are on Amazon. ( http://www.amazon.com/Cuff-Massager-Calf-Muscles-Speeds/dp/B008LY3G6M/ref=sr_1_2?ie=UTF8&qid=1400990327&sr=8-2&keywords=3+speed+calf+massager) Thanks for the tip about the Dr. on the rls. I’ll definitely check that out. Anything That might help! I’ve also noticed I have swollen ankles. Wonder if I am retaining water. ? (I am Soup2 on the unlocked site) I cant even express how much I appreciate your help Kim. It calms me to hear from you. :) Susie

  120. avatar Kim Waller says:

    Hi susie I use the bottles laying down, one on my feet, one obetween my calves and one between thighs.People are saying I seem a bit distant, saw a friend today who hasnt seen me since before detox and she text this evening to ask ig I eas ok as I didnt seem right.What I mean is I think I doing really well and am definitely much better but not back to normal self.It takes time but look how far you have come! I am sooo proud of you no way could I have done it without strong pain meds.i am weaning them down now and gone from 60mg of slow release morphine to 40mg.When I get to 30 I can keep on that as my permanent treatment for rls if I want.I sleep so well with it now.i have also sterted hypnotherapy today to help relax me.Sounds daft but try just thinking about today not yestetday or tomorrow just dealing with legs today.Pull out a tfew treats for yourself hair done favourite meal whatever you like.Apreciate any sleep you get day or night sleep whenever and wherever you can.Keep in touch still early days, take care..kim x

    • avatar Susie says:

      Thanks Kim. :) Don’t feel silly about trying ANYthing deal with this nasty condition! lol I dragged a friend to an EFT class over the weekend. It is sometimes called The Tapping Solution. May or may not pursue it for RLS, but it’s not something I would normally do either. Take care, Susie

  121. avatar Kim Waller says:

    Hi Kimmie, how you doing hope you ok? Wanted to ask you or anyone on site about how you feel after being off mirapex for a while . Think I been off about 6 months now not sure exactly. Doing very well with rls just take low dose strong painkiller around 6 oclock in evening and it is slow release .I am so grateful to be having good sleeps the vast majority of the time.
    However I have noticed(and friends and family) I am not quite how I used to be.By this I mean I am not as sociable and outgoing as before, I am ok with close people but tend to want to shut myself away more than I did.Not depressed exactly more like a bit flat.Now this could be nothing to do with mirapex as I was diagnosed last november with an overactive thyroid caused by Graves disease.I am on mefs and my thyroid levels are noe in range so could be associated with that.
    Just difficult sometimes yo know what is causing what! I also have very little appetite these days and think its because I ate so much whilst on mirapex perhaps . Basically dif anyone else notice a bit of a personality change once off mirapex, thankyou and good luck n hugs kim x

  122. avatar Kimmie says:

    Hi Kim, there are ups and downs for sure, but mostly it is nice not to have the health problems I was having while on Mirapex. I have noticed the personality change you speak about. I have days where I do want to socialize but mostly only with people I am close to, and I am tired alot. It has now been 8months and my legs are much better! I have noticed some serious issues with my cognitive processes, especially task oriented, memory, and ? there it is, cant remember what I was going to say. I have lost memories of things that have happened in past, places I have been and things I have done. I have trouble remembering how to do things for example, cooking. I am a good cook, and I forgot how to make meatloaf. I put the meat, ketsup, salt and pepper and noticed it wasnt holding together, my husband walked in and said here lets put some eggs and cracker crumbs in, and I said oh yow I forgot. I also have stuck my finger in hot water to see if it was boiling. I also told my husband not to pick up the metal thermometer out of the meat which had been on the grill, and 5 minutes later I grabbed it and tried to pull it out of the meat! I also stepped off of a ladder 2 rungs from the bottom. I see people I met last year on the lake and have no recolection of meeting them. I want a job, but I am so afraid I cannot handle it. I have to really try and focus on even the simplest tasks, and I have developed a routine of walking in the mornings, and working on something around the house every day. It scares me to think this may not get better, but i hope I dont have permenant brain damage from it. I am hopeful in time my brain will heal and things will become normal again. My foggy brain is still with me just like it has been for 10 years! I sure wish that would go away! What have you noticed about what you are experiencing, differences? or specifically what parts of your personality or capabilities have changed. What a mess huh! Thanks for checking on me, Kimmie

  123. avatar Kimmie says:

    Oh and yes, my appetite was like that at the 6month point too. I am normal again at eh 8month . I am still avoiding caffeine even though I want coffee to stay awake, but it makes my legs get the sharp pains on the second day of drinking it. I too have to take something for sleep too. Right now I take the niquel sleep only and melatonin. some nights I have to take one of my strong ones, and sometimes I can sleep with none of them it just depends. We just have to keep trying, like you said, for today right now is all we can do, and talk to each other and share what works for each of us right. Have a great day! Kimmie

  124. avatar Kim Waller says:

    Hi Kimmie, tbhanks for reply sorry for delay in reply, having probs with my mum .She is 84 and having major surgery in 2 weeks so busy with hospital appts for her and sadly she showing signs of dementia but won’t accept it. so been stressful.Glad you mentioned your appetite was poor for some months hopefully it will sort itself out over time

    Personality wise I am getting back to where I eas albeit slowly.People just saying I dont seem myself probably because I am not as sociable.I find the healthunlocked forum excellent but like to know how you are doing.I am making an effort trying to go and and visit family and friemds and feeling more relaxed. I have just come home from a 2 week criise to norway and ot was ok but this is what I mean I was so happy to get back home am much more of a home bird than I used to be.
    Think we have beem through such a brutal weaning that no one could understand unless been through it.Takes time to get completely over something like that.Getting over it we are doimg though we are fighters! Without your help I could never have done it but we did well done us.
    I do have some problems with past memories from time I was on mirapex, Suppose any med that messes with your brain is going to cause probs with memory and thimkimg process.I hope you continue to Improve and eventually manage to cope with a job.Unless financial reasons I would give yourself gull year ofg mirapex till you start makinh big changes just enjoy the sleep and relaxation you and we all deserve
    Take care kim, , wishing you happy days and peaceful nights hugs kim x

  125. avatar Kimmie says:

    Hi Kim, I am so glad to hear that you went on a trip and enjoyed it. I know what you mean about home, I just went on a short trip myself and was so glad to be back hom again. I will be praying for your mom and your mom while she is having her surgery and for a healing recovery. Be sure your getting lots of rest, and drinking lots of water to keep your body working for you. ( smile) Thank you for being here for me you are a very special person and I am so glad we met and get to share here. I am doing so well right now with my legs and resting well. I hope you continue to improve, your friend Kimmie

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