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Restless Legs Syndrome
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Hi, I'm a newbie here. I am 56 in a few days, I've suffered from RLS since I was 24 and now it dominates my life completely. At first, when it wasn't too bad I drank and as it got worse I drank more and more, not understanding that I was making it worse. 15 years a go it got so bad that even after a whole bottle of Jack it woke me from a stupor, I was so angry I stabbed myself in my right leg 6 times with a nail file, it got very messy. My GP put me in therapy and alcohol counselling then started me on Ropinirole (Fail) then Zopiclone (Too many side effects) and finally Pramipexole which started to have some effect. About 5 years ago I found out by experimentation that 2 Zapain on top of a max dose of Pramipexole worked a treat. Well that couldn't last and for the last 2 years I have been overdosing more than double my prescribed amount of Pram plus 2 or 4 or 6 even 8 Zapain some nights as it is out of control now. I started on Gabapentin a week ago but it doesn't work unless I take at least 6 Pram and 2 Zap too. I'm trying Magnesium oil at the same time but now I just have greasy RLS as its useless. I no longer drink, I've lost jobs through lack of sleep, now my health suffers daily as I live in a funk with constant headaches and dizziness. I've had several meltdowns where I just cry all night in despair and desperation, I cannot face this anymore - It will kill me one way or another and I don't think I mind anymore. S.

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SPBlue, You sound like you need a lot of help. Do you have a good neurologist. If not, I think you should try to find one and get on a better regimen. I too have tried all the usual drugs but would augment (drugs stop working) very quickly. I have been given opioids and they work well, but in the USA they are cracking down on doctors giving opioids to patients even if they don't abuse them. They started me this week on Horizant, not sure if it will work, too early to tell but it is very expensive. Keep reading on here, you will get a lot of information and advice and hope you start getting better soon. Best Wishes.

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Thank you. My doctor has just retired, I saw a differnet one recently to try Gabapentin and it was a struggle to get that. He was quite dismissive so I feel I am starting all over again. I will take your advice and ask to see a neurologist in the NY. I will discuss opioids with him/her when the time comes as I need an appointment with someone with time to deal with it properly. The NHS in the UK is under such a strain, especially where I live, that its like a revolving door - Just 10 minute rushed appointments that take 2 weeks to arrange. As I say I'm new here but I've seen already that there are things I havn't heard of and certainly not been offered so maybe there is some hope. Thnx again. S.

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Have you tried smoking a few joints

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Hey SPBlue. I am sorry you have had and are having such a horrible experience, one that will resonate with many of us and certainly does with me in terms of not wanting to live if life is just this constant exhaustion and I can't work, have a social life or do the things I used to love.

But I am also glad you have found this forum. I've only been on it a few months but it has been so, so helpful in practical and emotional terms. With this condition you need to be your own advocate and your own expert, and this forum will help you to be that. And just knowing that there are others out there who understand the impact of this condition has made me see it is real, I am neither depressed nor lazy nor neurotic nor all the other derogatory labels others try to give me - especially GPs!

I note you are in the UK and completely agree with your comment about the NHS and your experience with your new GP. I would suggest that you ask for a referral to a sleep clinic instead of or as well as (if you can get it) a neurologist. There are a few sleep clinics around the country and sleep consultants are likely to be more useful than (potentially) a neurologist.

One positive is that in the UK there isn't the war on opiods that Hoffie describes in the US. However, I suspect with your history of alcohol dependency (me too - because of the stress caused by this condition!) and tolerance to Zapain doctors might be wary of prescribing opiods.

Do you know about augmentation? I have not experienced it myself (yet) but from what you describe it sounds likely you have augmented on Praxi and nothing will help until you cut it out - slowly and with the support of other meds including opiods. A sleep consultant is probably best placed to help you with that.

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Thank you, I will ask about a sleep clinic too. I'm on 0.088mg of Pramipexole, I'm supposed to take no more than 5 every evening, Its about 9pm as I write and I've taken 10 plus 2 Zapain and 3 x 300mg of Gabapentin. I got sleepy whilst reading but my legs kicked off as soon as my head hit the pillow so I'm up again and will be for hours yet, rookie mistake attempting sleep so early. I thought the Gabapentin would help me wean off or just take fewer Prams but it hasn't touched it. Thank you for you suggestions, this site has more gen and support than I've found anywhere else, I'll keep reading. S

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Definitely augmentation. Please read about it, e.g. by using the search function on this site. Gabapentin win’t help until you’re completely off Pramipexole and you’re through the withdrawal effects (may last several weeks after your last dose). Sorry not to have a better message.

Usually only an opioid, like tramadol or oxycontin will help during the reduction of pramipexole. Oxycontin, in the form of Targinact, is officially licensed for RLS in the EU.

Also look into posts about iron and ferritin.

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A helpful link on augmentation: sleepreviewmag.com/2015/02/...

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If you feel able to complete this important survey it would be very much appreciated: earls.eu/earls-patient-surv...

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I’m so sorry that you’re struggling, I’m new to this too but have quickly realised that there is so much fantastic help, support and information here!

One day/night at a time. I look forward to seeing you getting things under control.

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Thank you all, for your comments and advice. It was another long night but I did get to read up on augmentation and yes, you're right, that is where I am stuck at right now and have been for a long time. I cannot get to a GP as its too close to Xmas but I will begin tonight, I'll start by taking only the recommended dose of Pram and no more then attempt to wean from there. I doubt this will be the best approach but my GP Surgery is jammed so its all I can do until NY - I will try my hardest. Gonna be a fun holiday. Thank you everyone.

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Fellow members have already given you great advice.I just wanted to add my support. You can get through this with the right help. Hold on in there. You are not alone and there is light at the end of the tunnel.xx

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Hopefully knowing this is augmentation and that it CAN be fixed, and this will not go on forever will help you to get through until you can see a doctor. When you get that appointment it might be worth taking with you one of the articles about augmentation, as your GP will most likely not know about it.

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Hi SPBlue, i havent read all your comments up til now. Please tell me what dose of the prami are you taking right now, you have said you will start by only taking the recommended dose of prami. Please reply to this please. You cant go from taking your double dose of prami to whatever you are saying is the recommended dose . SO I NEED to know what you have done with reducing your dose to what .. ?

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Oh and I forgot to say - Did the survey when I found this site the other day.

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Thank you so much for completing the survey. It really is very much appreciated. :)

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Hello SPBlue

As others have said, you are on way too many DA meds, and they are making things much worse.

Just be assured that you can recover from this and life can begin again. Many of us here know exactly what you are going through, and how hopeless it all seems, and how suicidal thoughts are inevitable when you are chronically sleep-deprived. It is with good reason that sleep deprivation is a primary method of torture.

Find a sleep specialist, but be sure that they are acquainted with RLS/WED. Not all are. Phone up and ask.

My own way out of the sort of misery you are enduring was via strong opioids, and it turned out to be much, much easier than I had expected.

A good specialist should not hold your history of alcohol against you, it is entirely understandable, and people with RLS/WED are known to be less vulnerable to opioid abuse than the general population.

I have never stabbed myself, but a have punched my legs over and over until they bruised.

I also used to drink like a fish, but I have absolutely no desire to increase my opioid dose.

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Are you taking any other medication? Doctors sometimes prescribe anti depressants which set off RLS! Even cold remedies are triggers. Some foods are triggers eg sugar, spicy food etc. We are all different and potatoes are a trigger for me. Once over the Augmention you can make a food diary and compare your RLS level with what you have eaten to eliminate some triggers.

You will get thro’ this and find going to bed a pleasure!

Good luck.

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Many thanks everyone, this is more support in 24 hours than I've had ever, I'm so grateful. I have been on anti depressants as I was caring for my mother for 5 yrs who has Alzheimer's, but I stopped them about 4 months ago when she went into care. That was unbelievable stress on top of not sleeping. I will print off some notes on augmentation and take them along with me, it should help thnx. I avoid sugar and caffeine, my drinking is under control, I don't smoke and I walk everywhere as I don't drive (dodgy eyes too) but I was unaware some foods can trigger RLS too - Figures! This is a gold mine, all I've been told is there is no cure, take these, next please. Thank you so much.

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Have you had your iron levels checked. Specifically serum ferritin levels. If you have restless legs it should be at least 100. Mine is 110 and I still take iron bisglycinate (gentle iron) from Holland and Barrett every other day to help with restless legs. It doesn’t stop restless legs if something else sets it off eg medication or food but it can be a cure to many. My doctor knew nothing about this but I have been taking it for years and I can certainly tell if I don’t take it. Don’t accept ‘normal’ levels from the doctor. Restless legs people need it to be at least 100. Google restless legs and iron.

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What Mumm007 said - Ferrous Bisglycinate worked a miracle for me!

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I second that and it works best, at least for me, if I take the iron supplement every other night instead of every night. I think that was advice I originally received on this site.

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Oh my...do not despair...there is help! There is so much valuable information on this forum...read and study up as much as you can about restless legs and especially augmentation as already suggested! Getting off that Pramipexole will be so much better in the end...but, I have gone thru it with Ropinirole and then Pramipexole

and it will be a struggle and you definitely need something different than Gabapentin...I had Tramadol and it was one of the most challenging experiences I have gone thru...but, hey if you have already concurred getting off alcohol you can do this and the withdrawal might be similar! Did you have something to help you get off alcohol? Do NOT let any doctors talk you into another dopamine like Pram such as Ropinirole or even the patch as augmentation will happen again with any of them! I found hot showers helped somewhat (at least temporarily)...some nights I took many hot showers and paced the floor and tried to occupy my mind with something (I crochet and it helped somewhat) but sometimes I could not even concentrate enough to do anything. Come on this forum...there is almost always someone on line who will be happy to help you thru the bad times! Just know that there is hope!

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So sorry to hear what you have been going through. Just not fair this world, but then again who said it was? Anyway I have been working with RLS for over 30 plus years. I can't take any of the gabapentin as they make me sick. About the only thing that works for me is tramadol 4 hours before going to sleep. I have been working with tramadol for over 20 years. Opioids work also, but I think tramadol 50 mg (2 pills up to 4 at night) works best with less side effects. For a while the tramadol stopped working but I cut down to 1 pill for a few days then went back to 2 or more and it started working again. If you look at how tramadol works it's important to take the drug at least 3 to 4 hours before laying down to sleep. This drug peaks several hours after taking the drug, so you need to take the drug early before going to sleep. I would also recommend trying one of the care clinics that are recommended by the RLS organization. There are also a good doctor at Scripps in San Diego CA, who specializes in RLS. Keep on trying different drugs and combinations and do seek the help of a doctor (Not just any doctor but one who specializes in treating RLS) Be careful you just don't go to a sleep clinic doctor because I have found the majority of them know very little about RLS. They may say they know, but the only thing they want to do is put you on a C PAP machine. Wishing you the very best. I know if you keep searching you will find some relief.

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I have obstructive sleep apnea and RLS. The Cpap machine is wonderful and has fixed at least one of my ailments. The RLS is more difficult to get under control.

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I don’t often post but your post has struck a cord with me. You are not alone, we are here with you. Thinking and praying for you to get some help and relief soon Xx

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Smoke MJ about an hour prior to bed. It works wonderfully.

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Tried it doesn't work for me. The RLS foundation did a study on MJ and said it didn't have much effect on RLS. Perhaps you have a very slight case of RLS?

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Darn. I only get it in spurts, but MJ does relive the symptoms enough to get to sleep. I wish you luck, hang in there. Kratom???

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You certainly have my empathy and I think we all share your hell in differing degrees. I've cried and screamed and punched at my legs when the crawling worm sensations wouldn't stop all night. I do feel for you about the alcohol side of things and I would have gone the same way except I realized very young that alcohol and I aren't a good fit for other reasons...but I do understand why you went there. I would try almost anything to get rid of RLS. Cut out sugars, completely if you can but certainly none after lunchtime. Stress and even small anxieties like a suspenseful situation would trigger mine. I have cut toxic people out of my life and that includes family members too. I only have 7 close friends I allow in my life and it has helped a great deal. Heat and humidity are bad for me. I'm in QLD Australia so as u can imaging summers can be hell, if it wasn't for my aircon in the bedroom. Id recommend starting an RLS diary with columns perhaps a spreadsheet and write everything down. You will be surprised how quickly patterns will emerge, especially if u colour events in. Red for stress and bad and green for good events or whatever you like. I'd thought I'd just about beat my RLS but I weakened and had an afternoon slice of cheese cake which gave me a dreadful night again. Some people say salt or lack of it is a trigger but I found that increasing my salt through my normal food didn't work but I found that Very salty crackers have been a great help to me just before bed. All my life I listened to the media about the health dangers of too much salt but if u are considering harming yourself then I don't think that getting your salt levels up where they need to be will harm you any more than what the alternative is. If you have read this far and are in Australia i'd suggest you get a pkt of Arnott's Balsamic vinegar and sea salt shapes and eat just before sleep. If they work like they did for me then find out the balance of what you need quickly as I put on weight with this remedy. I'm praying for your miracle.

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I really feel for you. You’ve received excellent advice from people already but I just want to say you’re not alone.

Many of us have been in your place and managed to get off dopamine agonists.

It’s really difficult but if you stick with it you’ll be in a much better place.

You have to start slowly but every day is a step to a better life without pramipexole.

Opioids will really help during withdrawal BUT you cannot take more than the recommended amounts no matter how great the temptation.

Gabapentin won’t help at all until about 2/3 weeks after the last dose of pramipexole.

Don’t take any other dopamine agonists like Ropinirole/Neupro patch as you will augment quickly again.

Definitely get your serum ferritin checked- needs to be above 100 although I’ve found that getting mine near or above 200 has really helped.

Stay strong- you can get through withdrawal and you will get to a place where your RLS is 80% under control.

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Wow! I'm blown away by all of you, so much support and advice - Thank you all so much. I did what I said I would, yesterday I took my Gabapentin as prescribed and stuck to the recommended dose of Pram, 5 and no more & no Zapain to top it up. As expected it was a night from hell but its a start. The crawling, slithering demon in my legs partied all night and the birds outside were singing when I finally got an hour or two's sleep. I can relate to the heat problem, I'm recently back from a 3 week trip to Madagascar, it was in the 90's most days and very high humidity esp in the NW. I broke my own record on Pram out there with 14 on 3 nights and again on the long flight home. Trekking in the rainforest in that heat with your head about to fly off is not fun. I do like a cool bedroom but some accommodation was a bit basic with clattering fans. Central heating is off in my bedroom at home. I came off alcohol on my own as it was ruining my health, about 6 wks sober I sought help with Inclusion, 3 months of counselling sessions with them helped but they signed me off when the 3 months were up which I find bizarre as I've been drinking since I was 14. You don't cure alcoholism just like that. I have a local AA group which I will attend in the NY. I also rang my surgery yesterday for an appointment with a different GP, I've met him before, a nice guy who's young, not jaded and sick of the sight of his patients like the last guy I saw. Friday the 18th of January is the first face to face appointment available as I was deemed "non urgent". I'll get iron levels checked asap. I will persevere, I have done so for years but you've given me a new hope as I read some of you have found success. I'm genuinely very happy for those of you who've found a way around this unbearable affliction, I've only ever been told there's no cure. Must and will keep the positive.

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Where in the UK are you? 18 January for a doctor’s appointment is barbaric.

However, the GP will no little about RLS- you will learn much more from reading this site and the main RLS UK page. They are on Facebook as well.

Do everything slowly snd always remember that taking more pramipexole is ‘feeding the monster’. The more you take, the worse your RLS will be.

Slowly, slowly- reduce as slowly as you can.

Co codamol you have been taking is addictive so be careful. As you have a history of addiction, opioids may not be an option during withdrawal so you will need to discuss fully with your GP and see if he/she will monitor you carefully during withdrawal. Tell them it is harder to get off pramipexole than crystal meth and maybe they’ll listen and help you more.

If you can get into an NHS rehab centre/clinic- that would help you with the alcohol and the pramipexole withdrawal.

You have to become your own expert- knowledge is power.

There’s a great little textbook called ‘ The Clinical Management of RLS ‘ by Drs Lee, Hening, Buchfuhrer & Allen- you can get it second hand on Amazon quite cheaply. It’s very understandable to a lay person and you can show all the relevant chapters to your GP.

Keep us updated on your progress and remember no matter how tough it is, getting off pramipexole will be the best thing you’ve ever done!

Thinking of you

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Well Its way after midnight, my 56th birthday and so - s...!!! 2nd night sticking to prescribed dose. I'll refrain from using the language I use in my bedroom on here, bad night, my bed needs putting back together, think I broke it but I'll do this first. Yes, an app on the 18th is barbaric. I live in Hampshire, on the coast. Getting past the receptionist is a trial in itself, you have to give reasons on the phone. Apps are available on the day with Dr?? if you call btwn 8 & 8:15 but I need to see the right person and I know who that is - 18th it is I'm afraid. Its a retirement village/town on the coast and people are flocking here from the North to live and then complain how bad the service is here and how much better it is up North. Sorry, I missed the MJ suggestion earlier. Tried it 3 yrs ago. I used to partake when I was 16 to 22 and was chilled as it gets but quit thru work - could smoke all day back then. Tried it 3 yrs back and it was like a physical assault, way stronger and it gave me heart palpitations/dropped beats. I couldn't relax for nuts, too old and alcohol has taken its toll. I find YouTube wiles away the hours now. I do intend to stick to the prescribed dose for a week if I can and then gradually lessen the Pram 1 tab per week until the 18th/01. Back to bed??

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Happy Birthday to you, sorry its not such a happy one, RLS takes alot away from us. That is a long wait for your appointment, grrrrr :( I live on the coast too, just a little way along from Hampshire in West Sussex also a retirement town, you just have to see how many flats get built to know . Stay strong you will get there, you have been given some great advise from the members.

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I never got back to bed. Well I did but my right leg woke me from a dream after 40 minutes and that's all the sleep I got last night/this morning. This is Night 3 on prescribed dose only and I'm still awake. I've had a splitting headache all day and I've not eaten as I feel faint and nauseous. This evening I've watched 3 films back to back and I can barely keep my eyes open, I fell over downstairs about an hour ago so I went to bed as exhaustion had beaten me, I had no feeling in my legs whatsoever. Guess what? Here I am up again, It took about 10 minutes laying down before it started. I can't kill it, I just can't kill it. I want to cut this thing out of me but I know I can't. All I can think about is cutting it out, whatever poisonous creature is crawling about in my bone marrow I want it out. Crying. So tired.

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So sorry, i would be on the phone demanding to see a doctor, tell them you are now feeling suicidal with no sleep, you cant take it anymore, make them sit up and take notice of you. ! Try to drink water and even if you can manage some toast or cereral, not eating will just make you feel worse, you need some strength to get though this.

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I feel you rls is hell. I swear by codeine and at night amitriptyline. I know what you mean about drinking too it sets them off crazy. Good luck in finding something that works.

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Well it was a deeply unpleasant Xmas thanks to my legs but I stuck to my guns regarding only the recommended dose of Pram. Tonight I will begin to lower the dose one maybe two tablets at a time each week. If I can manage two I'll be off them by the 18th when I get to see my new GP.

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Sounds like you’re doing amazingly well! All power to you

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Hi Higgi,

Amitriptyline is poison for 99% of people with RLS. You’re clearly the lucky 1%.

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