Restless Legs Syndrome
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My RLS Story

Hello, my RLS started 4years go after taking a course of antidepressants'. I took myself of them but unfortunately, my RLS stayed with me. I also get it on my arms and chest. Never have it in both legs or arms at the same time but it can easily switch from limb to limb on one day. I lost alot of sleep, often sitting in the shower for relief. The Neurologist tried me on various meds, all hit and miss, some made me sick or my RlS became worse. I settled with Ropinirole 1 mg everything was great, I thought I had at last found my magic pill. After awhile, Augmentation crept in, it just stopped working. I went up to 2mg, again fine, helped for a few months but then I found, it was starting earlier in the day. Sitting in the evening was the worse. I never knew when it was going to start, which limb, chest, or even if it would ever stop. I upped my dose again, under neurologist, to 3mg. I took one early afternoon, evening and bedtime. I started to hallucinate badly. I started seeing figures and large insects in my room at night. It would leave me terrified untill I realize that they were not real. I even sat in what I would call a snow storm. If I looked at an object long enough it would appear to me to move. I quickly took myself down to 2mg and put up with RLS in the eve, just walking around or back sitting in the shower. I am waiting for another Neurologist appointment but as I said before, its just hit or miss. I'm not sure they can help anymore. I will continue going though, in case, one day, a new type of medication will be there to try. I'll never stop trying. I'm so tired, they say its incurable and gets worse with age but who knows what around the corner. What doesn't suit one sufferer may just suit another. I hope you all, fellow sufferers, one day find your magic pills. Its a horrible thing to live with. A curse.😢

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So sad to read this. Well done for cutting back on the ropinirole.

What other meds have ypur tried that didn’t work?

And did you have an assessment of your blood serum values of minerals and vitamins, especially the ferritin level, which should not just be ‘normal’, but for people with RLS in the rather high range (well over 100).

And do you take any other meds that may possibly contribute to the RLS? Antidepressants, cough syrups and antihistamines are mostly bad.

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Hi there, thank you for your reply. The only other meds that I am taking is a statin and Thyroxine for an under active Thyroid which I have had since 1999. I had all of those levels checked out. I regularly have a blood test to check my chlolesterol, iron and thyroid. I've taken Pregabalin, Gabapentin and Neupro transdermal patches Rotigotine. I try not to drink anything with caffeine. Ive tried taking magnesium and iron tablets. Not sure what else I can do.

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Hydrocodone 5 325 work for me

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The statins was what started my rls years ago. My dr is always saying I should be on them but no way. Now I think it may have restarted with cylexia and am cutting it down. So frustrating because of all the side effects. My dr just says to try something else but I have found no relief just another set of side effects

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Hi there, that's exactly what I am finding. Hit or Miss😢 Its interesting that you mentioned Statins. I take Atorvastatin 20mg just one a night. I dread to think that I could be making my RLS worse by taking one. I do have high Cholesterol, it runs in the family, I will mention that at next appointment Thank You.

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It’s something to think about. It was so bad I would need to get out of the car to walk around. Also had terrible, terrible side effects from getting OFF lexapro after 13 years. Thank goodness I found a blog with other suffers (there were 22 side effects). At least I knew I wasn’t CRazy🤪

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There is hope then. Thankyou

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Hi Markren, your post is very sad-making. It’s so hard when the meds don’t work. And frustrating to read of your neurologist merrily upping the dose of ropinerole. You did well to reduce by yourself. It sounds like you may have to discontinue ropinerole eventually. That is likely to be a difficult process.

The next class of drugs is opioids which many people on here take. Some are on tramadol, some OxyContin, some targinact (a mix of oxycodond and naloxone - licensed by the EU for rls treatment) and some methadone.

Even though the gabapentin didn’t work on its own, I wouldn’t necessarily rule it out as part of your treatment option (or you could try pregabalin - lyrics). I have noticed that rls sometimes responds better to a combination of drugs, each at a low dose.

I really hope you find something that works.

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Thank you so much for your reply, has been very informative. Cutting out 1mg dose of Ropinirole was not easy. I couldn't go to bed, spent a bad couple of nights walking around and in and out of the shower. So not looking forward to cutting another dose but you are right, I will probably have to half the pills and eventually stop altogether. I will certainly talk to the Neurologist first and ask about taking two lots of meds at a lower dose as you suggest. . I was told that I could take Clonazepam at a low doze only to take when I couldn't sleep. I might give that a try. Thank you again.

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Clonazepam works for some to treat their rls so probably worth a try. It can be a tricky med also though - I’ve read that some people find it hard to discontinue.

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Hello, I might just give it a go. I was told that I would only be given 28 tabs of 0.50, I think it was that dose, over a 2 month period where I could cut the tabs in half to start. Only take when I needed help in getting off to sleep. I refused last time at Neurologist appt but I think I will try next time. Thank you.

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Hello Marken,

After having tried all the DAs with varying results and always with unpleasant side effects, I am now on Lyrica extended release and Tramadol extended release, both at low doses. It’s working fairly well. I have the quicker acting version of both for any breakthroughs of RLS during the night.

I hope this helps

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Hello, thank you for your reply. I think I remember trying Lyrica at one time but not slow release and not along with another med. I certainly will be mentioning this at my next appointment. I have never been offered Tramadol does it have any side effects?

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I feel a bit sleepy during the day but it’s not dramatic. I also don’t know whether it’s the Lyrica or the Tramadol.

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Tramadol never helped me. Its like taking a placebo

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I’m really sorry, Markren,

I’ve just looked at my Pregablîn packet and realised that it is not extended release. I was convinced it was. The Tramadol is, however.

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Hi there, that's quite alright, thank you for your help. I'll still mention taking two different meds at a low dose.

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Oh dear, I'm so sorry to hear of your problems. I knew that pre-existing RLS can be made worse by antidepressants but not that they can actually cause it. I think this should be reported via either the yellow card system if you're in the UK or your own county's drug side effect system. It is often the situation that effects aren't known about as each individual doesn't think the report it. Your neurologist of GP should do this but if not you can do it yourself.

I'n pretty convinced that Pregabalin has permanently worsened my RLS ( haven't reported, maybe I should! )

.... and thinking about it, although I have RLS in the family and so just thought here was mine starting many years ago, actually at the time now that I think about it I was taking an antidepressant Citalopram at the time - long since stopped but my RLS is now vert severe, but you never know what it has all done to my brain.

I also take 3 tablets for high blood pressure. One of them is of the type that can worsen RLS. I've tried to stop it for several weeks with no improvement and there are no alternatives as I've tried all the others - but maybe some of these known triggers actually are permanent triggers??

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Hello, thank you for your reply. It helps so much to be able to talk about my RLS to other sufferers. I don't know of anyone who has had it. When I told the Doctor that I had stopped taking the Citalapram, hoping that it would stop my restless legs, she did say that if I wanted to go back on antidepressants, SSRI's were not a good idea as she knew it had triggered off the RLS. She offered me another kind of antidepressant called Nortriptyline but as I had stopped the Citalapram, I decided to leave it. I went on Citalapram because I had a bereavement. I should of weaned myself of it and not just suddenly stop. I had a couple of days suffering with dizziness and nausea which wasn't pleasant but I really thought the restless legs and sleepless nights would then end. The Citalapram had triggered it off and now I'm stuck with it. I have heard that pregnancy can trigger RLS but I never had a problem. Maybe I was just unlucky with the Citalapram. Its back to the drawing board now.

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Marken

I know most on here will not agree with me on this or maybe won't even believe me but i tried Ampitripyline 50mg and it has my RLS well under control like yourself i too suffered from arms, head, shoulders joining in with legs while body RBS i named it, i also got augmentation with Pramiprozole had to wean of it slowly. I had been given amitriptyline for a Neurolgia complaint i have it didnt touch it but i thought I'd give the amitriptyline a try for my RLS/RBS and increased up to 50mg before getting relief that was over a month ago and praise be to God I'm still free of that tormentor.

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Hi there, I just this minute have had to get up and face another restless night and have just read your reply to my post. That is great that you have found a med that is keeping your RBS at bay. I am so envious of you I often get it in my arms, having it in the legs is bad enough but you can try and walk it off. I cant do that with my arms and chest its very difficult to get rid of. I have tried crawling across the room putting pressure on my arms but its not the same as walking. The things we have to do to try and find relief. I sometimes feel that all the nerves in my body are all on edge. Horrible feeling. I just can't keep still. Is Amtriptyline an antidepressant like Nortriptyline? I'm taking note of all the advice I've been given on this forum, noting down all the meds that seem to be working for RLS sufferers and I am going to see my GP next Friday and run it pass her. I'm going to check my iron levels too. I did read today that having an underactive thyroid can be a problem too with RLS /RBS and also being on a statin may also be a problem. I'm so grateful for all the information that I have received since joining this forum. Its given me hope. I do hope your new medication continues to keep you free from this terrible condition we all suffer with.

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I so empathize with you Markren. Ive had this many many years its also heredity my Dad had it. I also have an underactive thyroid years also.

It is a dreaded affliction and I've bought a number of remedies to no avail it was doc put me on Pramiprozole and while it worked at first it became a terror in a short space of time and caused Augumentation so had to wean of doc gave me 2wk script for sleeping tabs that was rubbish then script for Diazipam still hopeless thats when i discovered Ampitripyline was to help wean of plus it stopped the rls/rbs right in it's tracks that was over a month now and still doing good all praise to God.

It does no harm to try diff meds and if they dont help just wean off. Augmentation is a nightmare and was the first time I'd ever experienced it and wouldn't want to again please God.

Let me know how you get on and i pray you too will get relief sooon with the right med.

Lordbless you.

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Thank you.

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How woderful. What reaction did your Dr have

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Have you tried kratom? It is a lifesaver for me!! You can buy it online, don't need a Rx for it. It's a little pricey but well worth it to me!

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hi there, no I've never heard of it. I'll look on line now. Thank you

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Several people on this forum use it and have had success with it. That's how I found out about it.

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