Gabapentin neurontin

[Salisbury51]

I've been prescribed gabapentin neurontin after being advised to come off pramipexole (I had reached the augmentation stage). I've been on gabapentin for four weeks now (2 tablets a day each 300mg). If anything my symptoms are worse, can anyone advise on how long it may take for that gabapentin to work and on its long-term effectiveness (or otherwise).

[involuntarydancer]

What stage are you at with coming off the pramipexole? Gabapentin doesn’t work for everyone - sometimes pregabalin is more effective - but neither will have much effect while coming off pramipexole or in the early days after finishing it. That drug needs to be completely washed out of your system first. Only an opioid is effective against the really bad symptoms experienced while discontinuing and immediately after eliminating pramipexole.

[Madlegs1 in reply to involuntarydancer]

Agree with ID - and maybe look at all possible triggers - as written about extensively over last weeks.

It does take time.

Shortacting sleeping pills can help for a while. Zolpidem is a useful one at lowest dose.

[Katerina22]

I am almost at the same position to you.Almost 7 weeks off pram and on lyrica for almost 2 months with rls being wild until to 2 days ago.Every time i tried 50 mg of tramadol it did nothing.BUT its 2 days now that that i have found relief adjusting my lyrica doses and adding 100 mg of tramadol at my last lyrica dose. Have a look at my last post.Good luck!

[BromazepamBrother]

Hi there I also suffer from severe RLS and I know how terrible it can be. I was a methadone patient for 16 years and was taking roughly 160 mg daily due to opiate pain killer addiction I developed when I had cancer at a young age. I was also on gabapentin and took 1000 mg nightly for two weeks and found it was garbage for the RLS. It did help with the pain though and I could say I see some potential for recreational use so that's why I stopped it along with the fact that it didn't work. I see the medication you were on is a dopamine Agonist and in both cases I believe the RLS is caused by lack of dopamine being released when you are trying to fall asleep. Your body's circadian rhythm releases less dopamine when you're falling asleep and that's what causes RLS in many people. I hate to say this but coming off a dopamine Agonist or any narcotic painkiller you will have RLS if not already more severe RLS. I tried a few supplements but found the only thing that worked for me was to totally flip my sleeping pattern. So I would go to bed around 7 a.m. when the sun was up and sleep until I felt rested. I believe this worked because the body's natural circadian rhythm causes the dopamine to be low at night when you would usually be used to sleeping. I think the only thing that will work is to stop all medications related to dopamine or acting on dopamine and give your body time to readjust to producing its own proper dopamine levels. Maybe I could suggest a night shift job but other than that I've Been Told that some RLS goes away and some never does. I've had mine for a month now and it doesn't seem to be getting any better. Some other Solutions would be to ask your doctor about a weak codeine pill which will help with the dopamine and only taken nightly not every 4 hours as you would for pain. This will work but then there's the chance for addiction and rebound RLS if you stop it. It works the same way for the dopamine Agonist you were on. Maybe you need to be on something for life if you find stopping your medication doesn't give you better results after a few months. I feel for you though because RLS is like living hell. I also tried diazepam AKA Valium which is supposed to help with RLS but I had no luck with that either and also it's a benzodiazepine so it is also addictive, does work great for anxiety though. Good luck on your journey to sanity.

[involuntarydancer in reply to BromazepamBrother]

Hi B/Brother,

If you have only recently come off the pregabalin and/or methadone, it could easily be the withdrawal from either of these that is causing your rls. I know that when I came off oxycontin after only having been on it for six months or so, I had an awful all over body restlessness and rls that lasted at least six weeks. I had a similar experience coming off pregabalin - 5 weeks of misery. I truly hope that it settles down for you in due course. I think you are right to think outside the box and switch around your sleeping times. Also to stay away from the dopamine agonists which I suspect would not be the answer for you.

Have you had a serum ferritin test? Raising serum ferritin to over 100 is helpful for a lot of rls sufferers. It may be of assistance to you. You need to get the actual figure - they always try to tell you that you are 'normal' which can be anything from 20 to 200. The other solution that is regularly suggested on here is magnesium which might be worth a try.

[BromazepamBrother in reply to involuntarydancer]

I did have my Dr run blood work and she said everything was fine. She didn't give me exact numbers and I'm not sure if in Canada they use the same measurements but my RLS started about 2 to 3 days after I stopped using methadone. I had been on it for 16 years due to addiction issues and was taking 160 mg daily. I've never had RLS in my life other than when I would run out of Street opiates and had no money. If my Dr is correct it's due to the painkiller withdrawal and I've just reached three and a half weeks and got my first full night sleep last night. I tried everything that I read and the only option that seem to be plausible was to put up with it until the opiate withdrawal was over. Methadone is a slow-acting opiate with a long half-life so it stays in you for about 3 days then you will start the withdrawal. With fast-acting opiates like percocet codeine morphine Dilaudid things like that which aren't in time-release capsules are supposed to be harder to stop but the withdrawal supposedly isn't as drawn out as it is with methadone. I felt like hell and even considered ending my life when the local detox said all they can do is feed me and give me Ativan for a few days. When most people hear you had an addiction they are very reluctant to prescribe anyting and most Dr in Canada anyway don't know anyting about opiate withdraw RLS. If somebody is going to be dealing with it for a long time they should see a specialist as mentioned. Thanks for the info I found it very educational and want everyone to know that my RLS is subsiding at close to 4 weeks after stopping narcotic painkillers. If ever prescribed a narcotic painkiller again I will not even fill the prescription. It's not worth the hell you go through to stop them, unless they are absolutely necessary due to a surgery that is Major.

[Yakester]

When I was on gabapentin I had terrible depression and anxiety. I just posted my sad tale of woe if you want to read it.

[Kayakcarole]

Low dose Naltrexone is working for me. I am now off Pramipexole. I also urge you to get your ferritin levels checked and if needed get on a non-constipating iron. Be careful of adding too much iron since it gets very toxic if too high.

[involuntarydancer in reply to Kayakcarole]

Hi Kayakcarole, are you still on 2.5mg of ldn? How did you know what dose to take? How long did it take to experience relief? At what stage were you able to discontinue pramipexole?

My GP has given me a prescription for ldn but he has no knowledge of rls or ldn and didn’t know what dose to suggest (we basically work in tandem trying to find a reasonable treatment for my rls). I started on 0.5mg a while ago but last night I increased to 1mg. I wouldn’t expect relief at that dose but read that it should be started low and increased at a rate of .5mg per week.

Could I also ask you: how good is the relief? I read one of your posts saying you still have to stand at dinner parties etc. is that the case since you’ve been on ldn? Finally, what time of day do you take it?

Sorry for all the questions but not many use ldn on here.

[Kayakcarole in reply to involuntarydancer]

Hello Involuntary dancer ( such a perfect descriptive word for one with rls!)

I will try my best to answer your questions. I am on 2.5 mg LDN twice a day for about a month now. I take the first pill in late afternoon and another around 9 pm. My Functional Medicine PA didn’t feel it was necessary for me to start low and build up to that amount so I didn’t. I have read different ideas on this as well. I didn’t notice any negative side effects from starting on 2.5 mg twice daily. There is great info on the benefits of LDN on the web especially at LDN Research Trust Forum and lowdosenaltrexone.org. It says people get maximum benefit after several weeks up to 2 months. I started taking it along with a 1/4 dose of Pramipexole ( half my regular dose) and have now stopped Pram completely. Some nights are better than others. Every night I supplement the LDN with Nighttime Leg Calm essential oil on my low back and also use Hyland’s Restful Legs Homeopathic tablets sublingually. I have also just begun taking a non- constipating iron along with Vitamin C & will have my ferritin levels rechecked in 3 months.

I have read much about the role of inflammation, SIBO , and low ferritin levels in rls. I believe I have SIBO and have been following a low FODMAP diet along with taking 6 Atrantil capsules a day for digestive symptoms as recommended by my PA. I also notice my legs are much worse after consuming any alcohol.

I am also researching CBD and CBN with and without high levels of THC .

I will repost about my progress in another month. I am getting ready for a plane trip to Europe which is usually an unbearable situation. Will report on how it goes, as well.

[involuntarydancer in reply to Kayakcarole]

Thank you so much for the info. I came across a study today which found ldn helpful for rls for most of the 52 participants. The optimal dose seemed to be 2.5mg daily. It didn’t say what time of day the dose was taken.

As well as ldn, I am currently taking a cocktail of drugs including 0.44 pramipexole (half a 0.88 tablet), 75mg lyrica (pregabalin) and 100/125mg dipyridamole (persantin). For now they are working very well - the best regime I have had in ages - I feel almost normal. However, for different reasons I would like to discontinue each of the drugs eventually and it would be great if i could control symptoms with ldn.

Incidentally, have experimented with cbd and with regular thc/cbd cannabis made into an edible. I appreciate we are all different (waad) and some sufferers find one or the other helpful for their rls, but neither made any impact on my rls though the regular cannabis helps a lot with sleep. The amount of cbd is not important though I think it’s better if there is some present - it’s the thc that helps my sleep.

I hope your trip to Europe is peaceful and calm this time. I would be very grateful if you would continue to post about your experiences with ldn and also about your suspected SIBO.

[Kayakcarole in reply to involuntarydancer]

I so appreciate your insights. It appears you are a massive researcher just like me. I have recently read a lot about the role of inflammation and also SIBO in rls. It seems inflammation is the root of all evil. ☹️

[Kayakcarole in reply to Kayakcarole]

Also wanted to add that I might still be having symptoms even though I am on LDN since I have only been totally off Pramipexole for about 2 weeks.