Restless Leg is the DEVIL!! - Restless Legs Syn...

Restless Legs Syndrome

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Restless Leg is the DEVIL!!

TheNubs
TheNubs

RLS started roughly 10 yrs ago while I was still in the Navy. I have been on Gabapentin forever 300mg 3 times daily. It was a godsend. I am now 41 and it seems that the Gabapentin is losing its miracle curing properties! Someone help!! As I sit here at 2 in the morning writing this thanks to we’ll you know....😑😑😑😑

22 Replies
oldestnewest

Yes , Restless Legs is one of the most cruel conditions to experience. Only those of us who suffer with RLS truly understand what it is like to live with it.

I have suffered with RLS for 49 years. It started when I was 18 years of age.

But now I am sleeping through the night and into the late morning. I said to my partner at lunch time today, "I think I am making up for all the years I did not sleep".

He said , he thought so too and did not want to disturb me sleeping. My partner Russell has seen the suffering I have been going through.

And he has been very supportive of me, it was Russell who got me onto this community forum.

Being on here has saved my life. Like many people with RLS, I have been on Pramipexole for a number of years, which then began to fail and resulted in severe augmentation. I was in a bad way one night and looked through my medications I had at home after having knee replacement surgery. I had some Endone (Oxycodone) left amongst my medications, 5 mg, so I took one tablet. This was along with my 0.75mg Pramipexole. At this point I had been slowly reducing my dosage of Pramipexole as I had been told I was on a very high dosage (3mg Sifrol). It is my experience that most Doctors and Neurologists have very little experience with helping their patients with RLS. So little is known, unfortunately.

The Endone made it possible for me to sleep. I tried the 5mg Endone for a few nights and had success with sleeping. But still kept taking my 0.75mg of Sifrol.

As I only had a few days supply of the 5mg Endone, I went to see my Doctor to get a prescription for more. Telling her that this medication helped me sleep.

My Doctor did not want to prescribe Endone but agreed to give me only one script.

She also filled out an authority form to apply for me to trial controlled medications. Saying that I was at a point where I had tried everything else and nothing was working now.

Over a few weeks I used Endone to help me to reduce my Pramepixole intake even more. I am now down to 0.125mg Pramipexole.

Then 3 weeks ago,

I went to my doctor with research done by others on using Buprenorphine Sublingual tablets 200mcg.

By this time the approval for me to use controlled drugs had come through.

I am now taking 0.125mg Pramipexole and 200mcg Buprenorphine. I am sleeping through the night.

The goal is to slowly reduce all Pramipexole and only be taking 200mcg of Buprenorphine sublingual to control my RLS. (0.2mg) such a small dosage.

Sorry this is so long, if you dont understand the steps I have taken, please ask me questions. Kind regards Julie

sargrith
sargrith in reply to Jules1953

Very interesting. You seem to have explored into your problems very much.I have posted on here wth regard not only restless leg but also my axnxiety problem. Do you or others know what Intermezzo is and what used for.Many thanks

Shumbah
Shumbah in reply to Jules1953

Hi for anyone planning on trying buprenorphine it can be hard to get .

However it is much easier to get TEMGESIC if you ask for buprenorphine it’s a flat out No exception is the USA , JAPAN and Africa that I know of .

They don’t even mention other options so if you say Buprenorphine and they say know ask them for TEMGESIC it is the same only microdose and regulated differently thus making it easy to acquire .

Shumbah
Shumbah in reply to Jules1953

Hey Julie

Well done 👍

Hello, I'm sorry to hear that the gabapentin is stsrting to fail for you. RLS does get worse as you get older and this may be a factor.

I have some thoughts on this which may help.

One is that the schedule of gabapentin you're on, i.e. 300mg 3 times a day is appropriate for other uses of gabapentin, epilepsy or nerve pain. However, usually, since RLS mainly occurs at night, it's better to take all the daily dose later in the day. You could take 600mg 2-3 hours before bedtime and 300mg 2-3 hours begore that.

I take all my gabapentin in one single dose at night.

Another thought is that the dose could be increased, 1800mg or more is not unknown. However, you may find switching to pregabalin more helpful as it is more potent and more easily absorbed. 150mg pregabalin is equivalent to 900mg gabapentin. It's taken just at night and can be increased to 300mg if necessary.

Opiates are possibly the best alternative to either gabapentin or pregabalin, but not so easy to get a prescription for.

You may also wish to get some blood tests for iron deficiency.

sciencedirect.com/science/a...

If you're taking any other medications, they may be making your RLS worse.

TheNubs
TheNubs in reply to Manerva

The only thing I’m on is the Gabapentin and I take Sertraline once a day. The gaba used to keep it at bay and now it’s like nothing works. It’s seriously affecting me! My sleep. And just my everyday life in general. Definitely time to see the doctor again and try to figure this out!!

Joolsg
Joolsg in reply to TheNubs

Sertraline is an anti depressant known to cause or worsen RLS. Safe alternatives are Wellbutrin and trazodone. Have you been on sertraline for a long time? It may be worth trying to adjust the timing as suggested by Manerva but also look at switching from Sertraline to an RLS safe anti depressant.

TheNubs
TheNubs in reply to Joolsg

I normally take the Sertraline in the morning and my gaba at night close to bed

Joolsg
Joolsg in reply to TheNubs

Then speak to your doctor about safely reducing the Sertraline and switching to Trazodone or Wellbutrin. Many people have found that anti depressants are the cause of their RLS.

Manerva
Manerva in reply to TheNubs

As I wrote, think about taking all the gabapentin later in the day or switching to pregabalin.

As Jools says, sertraline makes RLS worse.

Yes, it is. It destroyed my life!

Medicines don’t work forever. Your body gets used to it over time and symptoms poke through again. Sorry you’re having to deal with it again. You are lucky though that it worked as long as it did. I take Lyrica. It helps sometimes. My doc won’t increase my dose, even though I’m on a low dose. sucks.

Maybe you’ll find something else that works for you, just as well, or better. Or you just might need a medication vacation off of gabapentin for a bit. Then go back on it and it might work again.

Godsend ‘& miracle cure are the words I have used for Pregabalin I used to take till it then stopped working.

I haven’t found another answer but I would suggest you have blood tests in case a 2ndry cause has appeared eg iron deficiency & check you aren’t now taking any other tabs which can make it worse.

It is the devil indeed.

So sorry for you! I can't suggest anything that helps! The Devil just doesn't go away!

It is horrendous. I too was on gabapentin and it worked at first. I told my doctor when it lost its effect. Now on pramipexole. What a difference. Up to now it is my saviour

Hi, I know exactly how you're feeling. Have had RLS most of my life. Won't bire you with the details.

However, I started with Prameprexole (sp?) a few years ago and it was great although it didn't agree with me. Eventually got my GP to refer me to neurologist who was wonderful and prescribed Roprinorole (Adartrel) I take this in the evening and sometimes in the morning.

Hopefully you will find relief very soon x

Hi there, I was on Gabapentin for quite awhile and it helped alot but like you I had problems where it became very unpredictable and my RL would start coming on whenever it felt like it, usually early evening when I would be sitting down more. Spoilt my evenings. GP arranged another appointment for me to see Neurologist, it always seems hit or miss with them. Its, well lets see how you get on with....... I tried every tablet they could think off, even the patch but sooner or later same thing woukd happen again. Augmentation they called it. I've been taking Ropinirole for about 4 years now, great at first, thought they had finally put me on the right path. No more RLS, so I thought. I went from 1mg to 3mg and then after a couple of years, my RLS started playing me up again, but this time in my. arms aswell. Never at the same time, never both legs at the same time thank god,it would jump from one limb to another.. I would be restless most evenings and gave up going to bed, just used to wait till I dropped off on the setee with exhaustion and then walk around in a fog the next day. . I then spaced my 3mg out. One morning, one early afternoon and one at bedtime. This seemed to work. If I forgot my afternoon pill then I would be in trouble for the evening. After awhile, my Restless Limbs as I call it, started to be unpredictable again but not as bad as before. I could go a week not hsvibg it and then the next week could be every day at some point, usually evening. In desperation and lots of tears, I went back to the GP and again an appointment was made for me to see the Neurologist. This time, I was offered Chlorazepan. Just a low dose. This helpes me to sleep through the night along with my Ropinirole. I still get it on and off but have excepted that I will never be rid of this awful disease. Trying to explain to someone who has never had RLS is very difficult, they don't understand. I have tried recently,CBD oil, this helps on and off if I use it topically. What I would like to advise you though is, please do not go down the Ropinirole route. I have tried to ween myself off a number of times, dropping one tablet at a time but my RLS came with no mercy, soI reluctantly started back on. I'm still on 3mg and with my Chlorazepan, which I havent had to increase yet and not forgetting my 1mg Ropinirole in the afternoon, I just have to go with it and hope for the best. I wish I could say I have the magic pill for you, but I don't. I've tried so many, but I would recommend a low dose of Chlorazepan. What works for one dosent necessarily work for another sufferer but its worth trying. Im still open to suggestions. If I thought standing on my head would stop it I would. I definitely feel your anguish and frustration in having this awful disease, go back to your doctor for advice, there may be something that could work for you. Hopefully, one day, science will come up with that magic pill. 🤔 Take care.

Joolsg
Joolsg in reply to SMPR

Augmentation on Ropinirole is pure hell. Like you I increased the dose and had RLS everywhere, including my face.

I went through withdrawal in 2016 & am so glad I did.

If you want to try getting off Ropinirole again, go very slowly- 0.25mg every 10-14 days using 0.5mg tablets & cutting them with a pill cutter.

The vast majority will have 10-14 days of withdrawal hell with little or no sleep and constant RLS.

I used illegal cannabis and tramadol every 4 hours during that period.

Once off Ropinirole the RLS is still there BUT not nearly as often and it’s much milder and only at night. I can sit through long plane and car journeys now.

Good luck.

SMPR
SMPR in reply to Joolsg

Very grateful for the advice. Very reassuring to hear you managed to come off Ropinirole. I hate being on it but frightened because I've tried coming off and it's been hell. I'm going to take your advice and try dropping 0.25 untill I feel comfortable then hopefully, drop another 0.25.It's the worse it's ever been lately. I think dropping 1mg too soon wasn't a good Idea😩Thank you.

Joolsg
Joolsg in reply to SMPR

Lots of people on here have been through withdrawal from Ropinirole and pramipexole and I only know of 2 people who didn't suffer the hell on earth that most go through.

I honestly didn't think I could get through it and remember wanting to give up but I knew that staying on Ropinirole was not an option as the RLS was getting so much more intense.

Now I only get mild RLS which wakes me at least once a night but I get up. have a cup of coffee and stretch and can get back to sleep within 20mins. Most people manage to get undisturbed nights and very little RLS.

I never get RLS in the day and travelling and sitting in the cinema are now easy.

I used Tramadol and illegal cannabis during the really bad nights.

Plan your withdrawal schedule so that you have time off for 2-3 weeks around the date you take the last dose of ropinirole. Have someone with you if possible as the RLS is constant and everywhere and you can't sleep or rest. I fell over quite a lot from exhaustion.

However, everyone who has managed to get off dopamine agonists agrees that it\s the best thing they have ever done and they will never touch another DA agin.

Pragabalin, gabapentin or an opioid like oxycontin or Targinact are alternatives for your RLS when off Ropinirole. Get blood tests to ensure your ferritin is above 100 and take supplements every other day if not as raising levels helps alleviate the worst of augmentation and can help 60% of RLS sufferers.

Let us know if you decide to withdraw and the people on here can encourage you during the tough times ahead.

ijsgrandma
ijsgrandma in reply to SMPR

I also augmented on ropinirole. I weaned off in 2017 and will never take a dopamine drug again! I also had a compulsive disorder while on it and didn’t realize it until I was off. It was shocking. I couldn’t see how out of control my spending was until off. If you can get off, do it and do it slowly. CBD can help. As soon as I got off the daytime RLS and chest and arm RLS was gone. It all returned to only at night in the legs and sometimes late evening. With ropinirole it became 24/7! I will never take a dopamine drug again. Good luck.

SMPR
SMPR in reply to ijsgrandma

Thank you so much for your advice. Again, very reassuring to hear of others that eventually managed to come off Ropinirole. I'll go more slowly this time, I'm going to drop 0.25 tonight, see how I go. 3rd time lucky🙂

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