S17

[Seamus17]

Does anybody get 100per cent reief from RLS? I've been on numerous medications and now on 14 mg neupro patch plus

10mg zolpidem for sleep but I could be up all night.i never know when I'm going to have a good night sleep .

S17

[Hidden]

Only got it from Kratom. I can tell you I was going through such a rough patch before the Kratom the sensation of stillness was stand back amazing - it brought a tear to my eye!.

That dose is way too big it is over FOUR TIMES THE HIGHEST dose recommended for RLS, I think you may need to think of reducing that drug and looking for another one, maybe an opioid like Tramadol can work reasonable, for a while.

Our bodies will always strive to achieve homoeostasis and the result is that the body nullifies the drug so after a while we take bigger and bigger doses of the drug with little affect. We would need to have a couple of methods at our disposal so we could mix between them when they start to fail.

Good luck

[march1044 in reply to Hidden]

I've stayed on kratom for RLS for the last two and a half years. It's all I take, and I get very good control. In fact, if I take large enough doses I can get total control. That's what I do on airline flights. But usually I take small doses--a gram at a time--to keep from building up a tolerance. At this dose, which I take usually six to seven times in twenty-four hours, I will have maybe an hour total of symptoms, or less. And I usually get 6-8 hours of sleep every night, although I do get up several times to take a dose of kratom.

[beady3]

Seamus sorry things are not going good for you,the dose you are taking is far to much ,I have had years of pain with my rls but I have been on Tramodol for twelve months and am very pleased with the results why don't you try those they are the slow release ones for me far better than the normal tab ,good luck just to say I don't think anyone gets 100 per cent relief all the time if they did it would be the answer to our prayer

[johannasuar in reply to beady3]

Beady3, I'm surprised to read your reply to Seamus, I thought you like me get total relief from TRAMADOL. As long as I stay on my schedule I do have total relief. The only time I get into trouble is when I miss my dose at the scheduled time and THEN I have to walk it out till the TRAMADOL kicks in and it takes longer to start working.. I hope I can stay this way for a long time, it's been five yrs for me.

[beady3 in reply to johannasuar]

Thanks for comment Johannasuar ,I don't get compleat relief for some unknown thing I get a bad night but on the whole I think it's the best tab I have taken for rls it's the slow release one ,I take mine 3.00 and 10.00,do you struggle with sleepyness the next day I do ,I have tryed taking 1 tab at 9.00 but that doesn't work so it's back to taking the 2 ,if you know a way of stopping me feeling so sleepy please tell me x

[johannasuar in reply to beady3]

Beady, I just replied with a pretty long note and I think I erased it by mistake. I'll answer you again later, I need to move on right now. Till later.

[Windwalker in reply to beady3]

I have trouble with daytime sleepiness. The Israeli's developed a drug they call Provigil. It is way too expensive, but the American drug companies have done a generic called modofinil. I only take it when I know I must remain alert, such as driving or meetings that I am required to take because of my profession. Modofinil is really cheap compared to the original. I take 100mg and it lasts about 4 hours. It does not make you hyper, it simply keeps you awake and alert.

[johannasuar in reply to beady3]

Hi beady3, like I said, I wrote back to you and then I errased it by mistake. The answer to your question about getting sleepy the next day, I do sometimes. If I'm very busy or out and about I don't feel a thing, however, I lived in Spain 13 yrs. and was born in Colombia, S.A where SIESTA is a must, so I think I'm preconditioned to getting that sleepy feeling automatically. If I can nap it's usually no more than 10-15 min. and then I'm as new and cool as a cucumber. lol

Beady, if this is the only price we have to pay for taking TRAMADOL, then we're ahead of the game. There are no other side effects and we have that wonderful feeling of relief from that wretched RLS. Like I said, in the Spanish and Latin American countries siesta is a must, so before, way way before I got RLS and take TRAMADOL, I used to nap almost every day. Don't fret, but don't do anything where you need to be alert, like driving. I can't do long distance driving because I feel like I go into a trance and can't keep my eyes open, but around town I have no problem.

[beady3 in reply to johannasuar]

Johannasuar You are right I don't have any probs with Tramodol,so I will Have a nap if I want one,good luck x

[johannasuar in reply to beady3]

Go for it beady, we're very lucky. Let's just hope we can hang in there for many years.

[beady3 in reply to johannasuar]

I am right behind you x

[Spudellen]

I have found Zolpidem wonderful for sleeping but NOT when I am having RLS. Although I have had periodic bouts of RLS since I was 14, I am now experiencing it severely and constantly and Zolpidem just doesn't work for me whilst I am in this awful situation. We are all different and I guess what works for one sufferer doesn't for others. Good luck.

[Hidden]

Wow, like raffs has said, 14mgs neupro patch is way way to high, no wonder you are having trouble sleeping. You are most likely having augmentation from the patch at that dosage. A sleeping med will only help you sleep IF your RLS is quiet. You need to get that 14mg dosage down and will probably have to come off it completely. Your doctor will have to help you with this, and you will need a strong pain med while withdrawing from the patch.

What ever med we take, nothing is 100% and we will get nights when the meds fail us.

[nightdancer in reply to Hidden]

14 mgs is way too high. That is a Parkinson's dose, and way too high for RLS. Put augmentation into the search, and you will see a ton of posts about people taking doses, mistakenly prescribed that high by their doctors, that are too high and will actually come back to bite you and make your RLS worse. You need to go down on the dose, so you need to talk to your doctor. not trying to tell you what to do, but that is internationally too high of a dose of the patch.

[desperatedan1]

Hi I was ropinorole didn't work for me 2 or 3 nights still had the trembles now I'm on gabapentin 300mg and i need only one which i take with my evening meal,no acid reflux and no feeling queasy i have been on them for 2 weeks and not a twitch i am over the moon,i used to dread going to bed now i sleep right through 6 7 hours hope this helps you as it has me

[johannasuar]

YES, I'm happy to say that I DO get 100% relief from RLS. I have tried a few other meds with "0" results till I got TRAMADOL for something else and realized it relieved me completely. I have been on this medication for five yrs now , it has no side effects for me and it's the least to cause augmentation and also NO WEIGHT GAIN. I take one 50mg tab at 5:30 pm and another at 11:30pm. There are a few others here that also use this and get full relief but beware, It does not work for everyone. Good luck, if you haven't tried this TRAMADOL do give it a try. PLUS, it works right away in your system, you don't have to wait till the med accumulates for it to work. Also, the trick is to NOT let the RLS start otherwise the pill will take a bit longer to work. Ordinarily TRAMADOL kicks in about 20 min, that's why I have put myself on a schedule and I feel like I don't have anything. Good luck.

[nightdancer in reply to johannasuar]

Tramadol is one of the meds that work on a regular basis, more so than anything else it seems, than most other meds for RLS. It was my "magic" pill until it no longer helped my other pain issues. It used to keep my RLS at bay 80% of the time. For most of us that is what we can hope for, mostly quiet, but there WILL be bad nights for most of us once in a while. There is rarely anything that works every night 100% of the time, so relief for 5 yrs at that low dose is great, Johannasauer

[johannasuar in reply to nightdancer]

Hello Nightdancer, I love the name, so appropriate, lol. Yes, I feel almost previledged with the TRAMADOL, like I said, it's been five yrs. but I get nervous that one day it might not give me the adequate relief I get now. I'll just keep doing what I do and pray it will work for a long time. With such a low dose I still have room to increase the dose should I need to. I feel so bad for others that are having no luck with their meds and have to suffer night after night and a few all day. I swear by TRAMADOL. What do you take now if TRAMADOL stopped working for your other pain issues? Does it work for the RLS in unison with other pain killers? Did you stop it completely? I hope you found another substitute for TRAMADOL, and what med do you take now? Hope you're getting relief with what you have chosen.

[Windwalker]

S17,

Windwalker here from the former colony on the North American continent. I have had RLS for 40 years, and I never know when it will strike. I take the same meds every day and some days I don't even know I have legs.

I get the best rest in a Lazy Boy recliner.

I put the neck pillow I bought for airline travel, around my neck. I recline so i am almost in a position you'd see in a Hospital bed. In order to keep my mind from wondering I put earphones over my ears with the volume turned dow low, Some nights I sleep 5 or 6 hours and the very next night it is nothing more than a couple of short naps.

My wife of 60 years either has never understood the sensation, or pretends that somehow I don't want to be in the bed with her. The truth of the matter is my legs just won't relax with me in the flat position, so I get up and go to another room where the recliner is located. Last night was a bad night and I took the same amount of med. Today I have pain in all my limbs as well as my back.

I understand when an RLS sufferer says they are uninterested in living with the suffering we go thru. I have 3 living brothers all of whom are alcoholics because they drink to keep the sensations at bay. They will probably die of alcoholism. Lets hope not. I am a non drinker, but am drug dependent to have any quality of life, so what's the difference? Probably none.

[Pippins2]

S17,the dose you are on is not a RLS dose it is a Parkinson Disease dose,I am shocked that any docor has prescribed it but obviously they have!If you dont already have augmentation it is highly likely you will get it.As Elisse has said you need to start by lowering it and will need strong painkillers to help you withdraw.Many find Tramadol helpful but others need stronger opiates , best of luck..Pipps

[sidvin]

I do, but maybe because my condition is not severe.

One mg , or maybe 2 at night and .5mg if needed during the day.

Never any problems if I am up and about.

[kaz50]

im on 7.5mg of zopedem they did help for rls before i went cold turkey im hoping it will go back to wha t it was anyway whos your docter ?10 mg that sound about right for me

[justcrazer]

i can't count how many diff. meds. i have been on over the years not any thing works for long if something is working i will still have break-thrus two or three times a week no one knows for sure what causes RLSand no cure i am sixty-eight till i was four-two no Dr. knew what i was talking about i have it in legs and arms sometime i feel i can't stand it any more but u go on.

[justcrazer]

it is hardly ever said RLS is pain-ful it is hard to explain it is enough to drive you nuts i can't remember when i have had more than three hours of sleep ,i have walked till i fall down get up and walk some more ,lots of people think they have it but they don't have a clue.

[Tease-ah]

I am on 5 x 0.088microgram Pramipexole since a year ago (taking them 2 hours before i go to bed). Works great!!! I still got 2-3 nights a month when meds don't seem to work, but hey that's better then a whole month

[Hidden]

Apparently this is not the recommended but I have 100% rre

[Hidden]

Yes I was advised by four sleep clinicians (together in the same room) 6 years ago to take my present meds that (for me) deliver 100% relief from RLS. I take Madopar for the pain and Siffrol for the symptoms.

My advice would be to seek out a recommended sleep specialist and discuss your options.

Good luck x

[Hidden]

And I still don't ever take the stillness they deliver for granted.

As far as I am aware, I don't experience any side effects from the Madopar. However ... side effects of Siffrol, only one word HIDEOUS. And I've experienced them all. And from just reading a new post on this site, have identified another. BUT even with the threat of augmentation, it is still better than the torture of RLS