restless legs

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i suffer with sever restless legs and the doctor has prescribed me pramipexolo im   scared to take them with the possible side effects.....has anyone on here been prescribed them and what are ur thoughts on it pls ?

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  • Posted

    I've not been prescribed pramipexole but have taken ropinirole for a few years. The main difference I can see, from what I've read, is that pramipexole has a longer half-life so I guess you don't have to take them so often. Its downside is that it can cause some sleep problems (insomnia) which in my case is greatly against my taking it.

    You can, and I used to, get a sort of brain fog as people call it with ropinirole. Nothing serious but it makes you wonder if you can concentrate; I think I still can.

    Rotigone patches are said to work and cause less augmentation than ropinirole or pramipexole. I mentioned them to my doc but he didn't seem to feel any urgency that I should want to try switching over to them. I wonder if the hassle of using them, which I presume there is, makes it worth pursuing them at the current time.

    If your RLS gets really bad, I'm sure you'll try almost anything to try to get a few hours peace from it.

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  • Posted

    I have been on pramipexole I didn't have any side effects, but they stopped working after a time as do other drugs. Would try anything that helps with this awful condition
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  • Posted

    Delyth, you should probably give us a little information regarding other medical conditions you have and all drugs and supplements that you are taking. Certain conditions seem to trigger RLS and not much you can do about that except find a substance that works for you.

    However, drugs and supplements are another story and can be stopped or switched out if they are RLS unfriendly.  Statins, HRT, beta blockers, antihistamines, antacids, antidepressants, melatonin, 5HTP and numerous other medications can trigger or worsen RLS.  I took one Benedryl this afternoon because the pollen count has been very high where I live and when I was driving home from dinner it took everything I had to keep from jumping out of the car.  I couldn't figure out what I had done to trigger such a bad episode then I remembered about the Benedryl.  When I was younger I could get away with it.  As we age so do the dopamine receptors in our brains so our RLS gets worse as well and more easily triggered.

    With that said there are literally dozens of "miracle treatments" you could try immediately.  I always tell people to immediately start to "under-eat."  Eat just enough nutrient dense food to stave off hunger.  Scientific research shows that under-eating will increase the number and density of our shoddy dopamine receptors.  When I do get an attack I can stop it in its tracks by taking one tablet of iron-bisglycinate (has to be a bio-available form) on an empty stomach.  Or 1/2 teaspoon of cream of tartar (it's pure potassium) will stop it.  People will swear by a teaspoon of mustard in water before bed (probably the tumeric) or niacin or tonic water.  Has to contain quinine and some people say it takes a full litre to stop the RLS.

    I would have your iron, b12 and folate levels checked.  Even if you're not anemic taking iron seems to help RLS.  Scientists have autopsied the brains of people claiming to have had RLS during their lifetime and they found that each and every brain had abnormally low levels of iron while the body had normal levels.  So if you take a form of iron that readily enters the bloodstream it seems the brain can pick it up from there but not our stores.  It only works for one night and has to be repeated with each attack.  Some people have gotten relief from methyl folate (not folic acid) and gingko biloba.

    If any of the above help with your RLS you have to get your doctor's permission to continue to take.

    Good luck and please let us know a little more about yourself.

     

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    • Posted

      Hi thank you for ur advice. Ive suffered with acid reflux for around 19 years , i take lanzoprazoles i was on 30mg but now my docs cut me down to 15 mg as he thinks thats aggrevating my ibs aswell.im on buscapan for that plus im on folic acid 5mg everday . Ive had restless legs for years but it wasnt really bad , it would just come and go ... For around a year its just been getting worse to the point i cant cope with it . Ppl say be active that helps , but in my expirence it isnt .if i go long walks ect i end up in pain with my legs then at night resting in bed the restless comes. I also had my gallbladder removed last year .
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    • Posted

      I think the lansoprazoles is ok in terms of RLS.  I've never heard anyone reacting badly to it in terms of RLS.  However, the buscopan I think would give anyone wicked RLS who is susceptible to RLS which it sounds like you are since you've had mild RLS for years. 

      I would also switch to methyl-folate rather than folic acid when you run out.  They're the same only methyl-folate is more readily absorbed and doctors don't usually care which one you take.  Methyl folate is a little more expensive.

      If stopping the the buscopan doesn't help or doesn't help completely then what do you think of those alternative remedies?

       

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    • Posted

      Did your IBS become worse shortly after Gallbladder surgery?  It's a common occurrence.  I think it's called "dumping syndrome."  Anyways alot of people develop very bad diarreah shortly after that surgery due to the bile just free flowing out of the liver into the small intestines rather than being modulated by the gallbladder.  The only drug I've heard that helps that is one called Questran or Wacol (which I think is actually a cholesterol drug) because it literally sops up the bile and gets rid of the diarreah.  Anyways, I think the lansoprazoles is ok but definitly not the buscapan in terms of the RLS.

       

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  • Posted

    My husband has suffered with RLS for many years. It started when he was very young. He's tried the usual medicines that the dotors prescribe with no luck. Last year he was prescribed Pramipexole which initially worked but then he became confused on taking them. Recently he's been on Rotigotine patches which worked well for his legs but not on his mind. He was having hallucinations & didn't recognise me or knew my name. This doesn't mean you'd suffer the same side effects of course but I don't feel that GPs give enough warning about these drugs or monitor their patients well enough when they are taking these medications. I just feel that, because of what we went through with these drugs, that I shouldn't keep quiet about our experiences. I sincerely hope you find a medication that suits you because RLS is a worse condition than anyone can imagine.
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    • Posted

      Hello Alitom and Delyth76

      Just to thank you Alitom for having the courage to mention that the drugs are not monitored enough after we are given them.

      I have always tried to avoid scaring people when they ask about my experience with medicines as we all react differently. Ten years ago I was so desperate for relief for back pain and RLS that I was tried on Ropinirole.

      I was to take it early evening and at that time I was usually on my own; After a very short time my body temperature dropped and I started to shake so got in to bed quickly. The following day I felt so much better as I must have had a different sort of sleep. I was so pleased, but night after night I went through the same thing. It went on for little over a week and I didn`t want to give up on it.

      However one evening I took it and passed out before I could get in to bed. It was a very scary experience ....but I wish so much I could have stayed on it. The Premipixole x 3 makes me very dry so I`m unable to take a higher dose and wake up feeling as though I haven`t been to sleep.

      It`s very interesting reading ther peoples experiences it has made me feel less alone.

      Alice

       

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    • Posted

      Did you take the ropinirole with food? If you do, I think it's supposed to slow down the rate of absorption (but not the extent of absorption).

      Oddly I get a sort of body shudder in the afternoon before I've taken any ropinirole. Getting up and moving about or eating carbohydrate helps. I think it may be related to a post-prandial blood sugar drop.

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    • Posted

      Hello Robert,

      I would have taken Ropinirole after dinner. The shivers usually started shortly after, very unpleasant. Wish I could have stayed on it though

      Best Wishes

      Alice

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  • Posted

    Pramipexole worked for me for a few weeks. Side effects were feeling sick and headaches but these diminished after a while. I retried them a year later after a session on Ropinorole and Rotigotine patches and they were less effective. Now nothing seems to work. Even Tramodol doesn't do much. 
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