After 2 weeks off of the pramipexole I think I’m safe in saying I’m done with it. I did the weaning from 1 mg to eventually .125 mg. But now 2 nights in a row the gabapentin isn’t working. I take 1 - 300 mg gabapentin and 2 - 50 mg of tramadol around 2-3 pm then around 8 pm, 2 - 300 mg gabapentin and 2 - 50 mg of tramadol. It’s been good for a little over 2 weeks. Am I being too anxious??
Two nights in a row Gabapentin hasn’t... - Restless Legs Syn...
Two nights in a row Gabapentin hasn’t worked, why??
Written by
Woody4
To view profiles and participate in discussions please or .
Read more about...
50 Replies
•
So it doesn’t matter what meds I take, if I eat/drink a trigger food, I’m going to have an episode?? This RLS business seems to be even more devilishly evil than I thought.
Yep.
It's very early days. Withdrawal from Pramipexole can take months. You will continue to get bad nights until your D1 receptors settle. It took me over 6 months to find a combination of meds that gave me 4 hours sleep.Give it at least another 2 months. However, if the RLS is still waking you after that time, you may find stopping the tramadol helps. Tramadol is the only opioid that causes augmentation of RLS symptoms. You could ask for a small dose of oxycodone instead.
The only pain killer my VA Dr will prescribe is tramadol.
Hi Jools.
It really is depressing to know that it can take months after coming off Ropinirole for other medications to be successful with RLS. I have shifted to Gabapentin (stopped Ropinirole three weeks ago) and whilst my RLS has stopped during the day (wonderful), it is still active at night from 10.00pm (ie within about 10 minutes of me getting into bed) to around 1.00am or 2.00am in the morning). At which time I resort to 0.125mg of Ropinirole again, just for my sanity.
I am well aware that a lot of people have much greater problems with health than me, so I feel a little uncomfortable in "moaning" but it is difficult to consider that I may have another x number of months of this .... Kind regards as always, Sally
Hi,These drugs are incredibly powerful and affect all the dopamine receptors. The majority take 6 months for their receptors to 'settle'.
I know some people suggest a 'reset' by stopping and restarting DAs but I personally wouldn't recommend it because dopaminergic meds can cause permanent damage to the dopamine receptors.
My journey getting off Ropinirole was horrendous. I won't go on about it but I had PTSD for a year after.
I would never touch them again.
Often gabapentin and pregabalin don't work after DAs. In that case, low dose opioids are given. Oxycontin didn't cover my RLS and after 5 years of bad nights I switched to Buprenorphine which has been miraculous for me.
This works at very low doses but isn't suitable for those with breathing problems.
I hope you find a solution.
Thank you Jools for always taking time to respond.
It's all rather annoying isn't it ... dopamine agonists cause augmentation and can cause permanent damage to the dopamine receptors (which are few and far between anyway for RLS sufferers).
But moving to Gabapentin can take up to 6 months to be effective, and it might not work anyway.
My problem in taking any opioids, is that for the last 40 years I have enjoyed half a bottle of red wine every evening with dinner (and the odd glass of Prosecco). Food and wine, to me, are the most wonderful things in the world, and, of course, alcohol does not mix with opioids!
Wishing you a good week ahead Jools and thank you again.
Alcohol for me is a trigger. Especially wine. Do you find it to effect your RLS?
Hello Birdland.
It's an interesting question and one to which I really don't know the answer. In 2013 I had a dissected vertebral artery and was in hospital for 2 weeks, most of the time "nil by mouth". I still had RLS every night.
On the odd occasion, I have had a week or so with no red wine, just one glass of Prosecco, and still hav RLS every night. We used to live in France with a massive ex-pat life ... some dinner parties would see me drink hugely excessively (champagne, white wine, red wine), and I could come home and have no RLS.
So really I am unconvinced about wine setting off RLS for me. HOWEVER, what I can say is that spirits DEFINITELY do. Sherry, gin, whisky, brandy, port .... all very very bad, so I never ever am tempted. And some of wines over 15% also hit me badly. So maybe your body is less used to wine that mine is (!) and that it why it is a trigger.
But processed foods are the worst. I can go to a really nice restaurant in London, say a Michelin 1 star for a special occasion, and I come home with RLS ... so I know without a doubt that they have used a shed load of additives in their food.
So I try to eat unprocessed foods all the time (not organic - too expensive!) just lots of salads, vegetables, fresh meat, chicken (that seems to be fine). Take away Chinese is an absolute treat but I know that I will be "shuffling" like mad after!
Hope this ramble helps. Warm regards, Sally
Sally, Just goes to show we are all different in what triggers our RLS. I have always been sensitive to wine, even before my RLS became cronic. A mere one glass would make me nauseas throughout the next day. My sister has the same expirience. Something in the genes?
I definitely agree with you on the processed foods (and Chinese food). I pretty much don't put anything in my body that is packaged with more than one ingredient. I stay away from carbs and even limit my fruit to one piece a day. Like you, I eat mostly lean meats and vegetables. And, unfortunately I can't go near caffeine! ☹️
I sincerely hope you are able to continue enjoying your wine.
Hello Woody4 , I have suffered with RLS for 50yrs. I was prescribed Sifrol (Pramipexole) in about 2008 and took it for approx 10years. Over this period my GP would increase my dosage whenever I said it was no longer working. I had never heard about augmentation and was unaware that the 3.00mg I was taking, due to the increases, was way over the recommended daily dosage. With my new found knowledge about the dangers of Pramipexole, I began a 2 year journey to slowly wean off this awful medication. The hardest time was when I was down to the last lower dosages.
Fortunately I had some Endone 5mg (oxycodone) in my possession after a knee replacement surgery and discovered that the Endone helped me through the final stages of weaning off the Pramipexole.
It is a year since completely stopping the Pramipexole and I now use Temgesic sublingual 200mcg tablets to successfully control my RLS. I place 2 Temgesic tablets under my tongue 30mins before bed each night. Temgesic is micro dosages of Buprenorphine.
It has taken a long time my brain to adjust after being on the Pramipexole for around a 10 year period. It does cross my mind that there could be some permanent damage to my brain.
There are some nights when I still don't sleep very well and last night was one of those. Silly me, I had indulged in some soft serve icecream with caramel topping. Sugar and food additives result in my RLS being worse. It is not the reason for my RLS but as we know certain foods and drinks make the condition worse.
Give yourself 6 months to a year after weaning off Pramipexole for your brain to heal and start being able to produce some dopamine of its own accord.
Best wishes from Julie McGowan from Western Australia.
I was lucky to have found this site early in my trials with RLS. It has led me through the many experiences of other RLS sufferers and has helped me avoid the pitfalls of the uneducated GP’s in America. I was able to know that when my GP prescribed the jump to 3 mg pramipexole daily that that wasn’t the way to go. I’m sorry people like you have gone through 10 years of uneducated hell. If it helps, people like me are benefiting from your agony.
Maybe you do need a Dopamine agonist. I went from Pramipexole to Ropinirole, and it was great until Augmentation. Now I go up to 2mg then reset for a month and then start at 0.5 again. It maybe that you can do a reset with Gabapentin. I use Methadone, I have reset once a year for 5 years and have little problems.
67Waterman in reply to
Hi Ron ... this is a really interesting comment.
I was on Ropinirole for 17 years, starting at 0.125mg every other night, going up to 0.25mg during the day and 0.50mg during the night. It's not a huge amount but over the last two years, I have had massively worsening RLS during the day and night. Augmentation. So I stopped Ropinirole three weeks ago and started Gabapentin.
I am back to having RLS from 10.00pm to around 1.00am or 2.00am every night (shuffling, up and down, walking around). I understand that it may take months for Gabapentin to really work (I would love to know why .....).
So now I take 0.125mg of Ropinirole (ie the lowest dose) when it gets too much, and it actually does work.
Is that what you were saying about "reset"?
in reply to 67Waterman
A reset is done annually or when 2.0mg is not enough. You titrate off Ropinirole in a few days and use something else that works, for me low dosage Methadone. Then start again at low dose and wait another year. But you only got to 0.75mg which was probably too little. More on this at rls.org The latest USA algorithm states.........Opioids are highly effective in the management of refractory RLS,16,43, 44 reducing daytime tiredness and improving sleep and quality of life,43, 44 and thus should not be withheld from appropriately screened patients because of a fear of potential development of tolerance or dependence.17 When opioids are used appropriately for RLS, escalation of dose is uncommon, and misuse is infrequent in the absence of a history of substance abuse. Nausea, constipation, and urinary retention are not uncommon but either resolve with time or can be managed symptomatically. Itch may be a problem as a result of mast cell degranulation rather than allergy. Daytime drowsiness, cognitive dysfunction, and unsteadiness resulting in falls, especially at night, are potential adverse effects. Opioids can suppress gonadotropin-releasing and luteinizing hormones, and symptoms related to low testosterone, such as lowered mood, increased sweating, and sexual dysfunction, may occur. Secondary adrenal insufficiency may be due to suppression of the hypothalamic-pituitary-adrenal axis. Opioids can induce central sleep apnea and may possibly precipitate or worsen obstructive sleep apnea. Testing for sleep apnea should be considered for RLS patients receiving opioids if there is a suspicion of sleep disordered breathing. In general, however, these medications are well tolerated at the low total daily recommended doses.
67Waterman in reply to
Thank you Ron for such a comprehensive reply. Understand what you are saying about 0.75mg at night being a small dose, but these last two years have seen RLS starting during the day and getting to the stage where it lasts all day, and at night where RLS used to be controlled, to where it was only controlled for a few hours. As soon as I dropped the dosage and stopped, the RLS completely stopped in the daytime - as if by magic. I will keep going with the Gabapentin for a few months to see if it kicks in, but am happy that I can once again use a low dosage (0.125mg) of Ropinirole as a last resort at night like I used to way back 17 years ago. Thanks again and warm regards, Sally
It is not advisable to have another Dopamine Agonist especially as you have done so well getting off your original DA
Woody4 after reading the above thread I felt compelled to reply to you.I do not have much scientific/medical knowledge about RLS however found my experience with RLS and medication is something RLS suffers should consider.
You say you have come off the DA (pramipexole) completely. Firstly let me congratulate you, as this is not easy at all. As advised by others in this group withdrawals from DA’s can last months. I have been off Ropinorole for 6 months and still suffering from withdrawal.
Pregablin / Gabapentin I believe are less affective for people who have been on DA’s and suffering hellish withdrawal from it.
It’s something to consider, especially if you have been on a DA for a long time.
No scientific proof, but I believe many people who have been on DAs have been left permanently damaged. Myself included.
I’ve been taking tramadol for a long time, same as yourself, not as often.
I found taking tramadol everyday eventually did not offer any relief at all @ 100mg. so resorting to taking it on those really bad nights. Twice a week. Now once a week. Hoping to cut that out completely too.
As Joolsg said trying stopping the tramadol for a bit, it might help. I know it did for me.
I have also been on pregabalin before the DA and after the DA. After the DA I found the pregablin intestfied my symptoms all most straight away.
Another thing to consider and find out your own triggers, it’s true no matter what medications you take, triggers can worsen your RLS almost straight away.
For me it was antidepressants, caffeine, and eating at night including food products. Nightly fasts have helped me a lot. Keep a diary and write it all down.
I guess what I’m trying to say is, hang on in there. It is almost certain you are still suffering from withdrawal from the DA and may continue to for a long time to come. Which is of course going to make RLS worse.
Getting over the withdrawals of the DA is key before concluding what other medications are effective. I.e Gabapentin/ tramadol. Finding triggers is also key.
Go on my previous posts and read about my experience with medications and others replies which may offer some further advise.
I honestly can relate how hard it is, hang in there. You will get through this hellish withdrawal.
67Waterman (sally I believe) you have done really well getting of the DA. It is not advisable to go back to it even at a low does especially if you have come off it.
Withdrawal of DA is extremely hard, some have compared it to heroin withdrawal. At one point I felt amputation of both my legs was the only option. I’m glad I’m in a much better place now.
I believe DA should be banned for RLS suffers as in the long term they cause more damage and suffering.
There are lots on here that can offer a lot more advice then me.
Wish u all the best
I agree with EVERYTHING you have said.Pregabalin, gabapentin, tramadol didn't help my RLS at all once off Ropinirole and I agree that permanent damage has taken place. Dr. Buchfuhrer also states that Pregabalin and gabapentin often don't work when people have augmented on DAs. Oxycontin helped a little but after 5 years of being woken 3 or 4 times a night and 2 hours of pacing between 10pm and midnight, I followed Shumbah's advice and asked for Buprenorphine.
It worked the first night.
0.4mg has completely stopped ALL my RLS. I've slept 8 hours a night since 14th July 2021.
Joolsg glad you in a much better place with the RLS. I know how hard it has been for you and the effort you have made to get recognition for RLS suffers. I really liked the talk on the radio show you gave.
Wishing you all best and happy Christmas xx
Happy Christmas to you too. Xx
in reply to Freegaza786
FreeGaza, do you feel that your RLS is under-control now...one way or the other? In other words, are you sleeping consistently and having a little fun during the day?
Woody4 in reply to
I have, both on the dopamines and now the gabapentin, gone days even weeks feeling great, like everything is under control then bang 2-3 days in a row. I didn’t know the gabapentin can take possibly weeks to start working. So here’s hoping for the future.
Freegaza786 in reply to
Hi Hidden hope your well,
It’s been two weeks since stopping the pregabalin.
The sensations ceased almost instantly on the first day and have settled for now, however over the last few days have felt them crawling back in the evening. No daytime symptoms at all.
Sleep - I’m still struggling to sleep, but prior to RLS I suffered mild insomnia due to my CPTSD. RLS made insomnia worse.
I’m struggling to dose off, and when lying there for nearly 2 hours, I feel the sensations crawling back.
Even on good nights prior to this (which have been rare) I’ve still been struggling to sleep.
Previously I’ve had promethazine, zopiclone, however found after taking them for a few days they had little affect. And the side affects with the zopiclone (hangover feeling ) were too much to bare.
I’ve never really talked about my insomnia as I’m mindful this is RLS forum. Other PTSD forums havnt been at all helpful.
In regards to RLS all settled down for now, just the odd sensations in the last two evenings. Which hasn’t helped as I’m just lying there not being able to fall asleep.
Nice to hear from you like always Wishing you all the best.
in reply to Freegaza786
Sleep is such a common Achilles heel with and without PTSD. When you can’t sleep can you go in a different room and watch the Weather Channel from the floor? Can you dwell on silly and inane things too as you watch the weather channel, ie, I have to finish that report, drive my kid to little league, pick up a gallon of milk. Sleep becomes like a cat chasing it’s tail. The harder you try…
When sleeping becomes the least important thing on your To Do list is when the sleep monster disappears. Or go in your kids’ room(s) and lay on the floor in there.
Freegaza786 in reply to
Hidden like a cat chasing its tail, I like that one.
I don’t follow when you say watch weather channel from floor?
And I think I over dwell on silly things, if I didn’t dwell then maybe I could switch off.
I’ve tried going in the garden and kitchen floor. I just struggle to dose off, and when I do finally dose off the nightmares I have are horrendous. It’s a work in progress, I think in the last 12months I have prioritised getting to the bottom of the RLS and completely forgetting about my mental health issues including the insomnia.
in reply to Freegaza786
In US we have a TV station called The Weather Channel. No one can watch the Weather Channel and stay awake. No one 😶. I find the more uncomfortable I am and the less I try to get comfortable to fall asleep is when it overtakes me.
So as RLS becomes less of a priority the sleep monster sees an opportunity to squeak in. Yep, that sounds about right. My husband and I always kid each other about “the Forces that Be.” We find that the second we mention something like “nothing has gone wrong with the car in a year” is when something does go wrong. I can practically hear the Forces “hey whose in charge of broken cars…you missed one.”
My life has been a walk in the park compared to yours. Yet for better or worse this is the path you are on right now. Can you take a step back and look down upon your life from a distance? I’ve posted about this before, but we all must face these horrendous “dark nights of the soul.” It is the only way to become a warrior and pass this strength and understanding on to subsequent generations. I wish there was an easier way, there just isn’t. I suffered from extreme panic attacks (for no good reason at all) for a few months. I was “taken” by them. When I recognized these attacks as a road to becoming a warrior and something I HAD to endure is when they essentially vanished. More dark nights (in other forms) came and will continue to do so through out my life, but the cat is pretty much out of the bag. I know I must have and live thru them and then pass this knowledge on.
Freegaza786 in reply to
Hidden it must be the time, it’s 1:30 am and still can’t sleep. The weather channel, we have that here too. Silly me.Tried that too unfortunately hasn’t worked.
Your might be onto something ( yet again) :
Can you step back and take a look at your life from a distance. >> dark nights of soul
I think that’s what I might need to do, and will report back to you in a few days.
I know that not sleeping is also a trigger for my RLS, the nights I have 4-5 hours I feel a lot better (my legs feel refreshed) then the nights I don’t sleep at all. Which looks like tonight is one of them nights
in reply to Freegaza786
Think about buying a book called Dancing the Dream by Jamie Sams, a Native American. 1:30am, guess it’s time to lay down in your son’s room. He too will have his “Dark Nights” as my son did. Who’s gonna be there to help him thru?
in reply to Freegaza786
This is a great way to spend 22 minutes. Don’t miss!!!
m.youtube.com/watch?fbclid=...
Freegaza786 in reply to
Hidden great watch. Like the rational behind it. You never cease to amaze me
Wow!! There should be someway to advertise this blog to anyone with RLS. I have learned more here than it seems my GP and or neurologist have in all their studies. When I went last to a neurologist, Nov 1, every time he started explaining about how a drug worked, why one worked as it did, I finished his thought for him. He quickly realized I knew what I was talking about and it’s all Thanks to my fellow sufferers, here on healthunlocked. Y’all have helped me beyond explanations. Thanks again!!! Keep up the Excellent Help!, Others like us need it.
Woody4 my thoughts were exactly the same when I found this forum.It quite literally saved my life ( I suffer with mental health also )
Joolsg , Hidden , Madlegs1 , Elffindoe
These are a few of the individuals who have just been amazing throughout my journey.
I don’t post much but constantly on here reading different things and listening to all different experiences.
You should still always discuss things with your relevant health care professionals and share the information with them to best make decisions about your care.
What works for one may not always work for another.
Wishing you all the best
600 mg of gabapentin at night is a very low dose. I'm surprised it worked for 2 weeks. And it is definitely too early for gabapentin to fully work. And DON'T go back on a DA even at a low dose and only occasionally.
I also take 300 mg in the afternoon
I understand your feelings towards DA's, but the alteratives are mainly painkillers. I get off Ropinirole easily, although the last 0.5mg takes a few days. I go back on a low dose after the reset. Now not all sufferers are the same, but it does work for me and is a possible and currently recommended option. The other option is to stay on an opioid with a low dose. If Ropinirole and a reset holiday stops working (and I never expected the augmentation until having it for 7 years) then I know Methadone at these levels is non addictive and will go onto that alone. It's what works for you that matters.
TeddiJ in reply to
FYI, I went through a horrible night of withdrawal from Methadone after being on a low dose of approximately 7 mg a night for only 2 months.
in reply to TeddiJ
Sorry to hear that. I can only repeat current advice from the RLS Foundation and my own experience. I understand we are not all the same. I last reset in October and had no issues with quickly titrating from 14mg. I don't normally go this high but because of
Ozempic commencement I delayed Reset and went up to 2.5mg Ropinirole.
TeddiJ in reply to
I am still taking the Methadone and hoping that at some point I can taper off of that and also that the natural RLS solutions will actually work. I think my brain needs more time to reset after years on the DA's. At least that is what my thoughts are now!
I agree that DAs have caused permanent damage in my case. I also echo the sentiment that triggers can play an enormous role in how severe symptoms are from night to night. I didn't see a pattern in what I was eating until I started researching MSG. Since glutamate is a factor in RLS, it makes sense. MSG is hidden under so many different names in the food that we eat. (There should be a law.) You can google "names for msg" and find numerous lists. It's easy for me to forget to check food labels, but a really know it when I slip up and eat the wrong food.
I've been off mirapexin for 7weeks and take pregabalin 400mgs. It's only now that I find it's working. However it's 4am and I'm sitting on the side of the bed as I stupidly stuffed myself with chocolate which I know is a trigger for me. I think your dose of Gabapentin is quite low. I took it at first and it did nothing so I changed to pregabalin. I think you should be patient. It takes quite a while to work especially if you have taken mirapexin or any other of that type
I have just come off pramipexole after many years, it wasn't working for me any more. Gone back onto ropinerol. Early days yet.
I have walked the floor from 9..30pm last night until 7am this morning.
Rummaging in my medicine box to see if I can take something any thing.
I found longtec 5mg took one out of desperation and I slept until 11am
I was prescribed longtec after a hip replacement in June. I know it's an opioid
But I am desperate to get some sleep. Only ever been on pramipexole or ropinerol.
I, too, toggled between PRAM and ROP. You can read my posts for more info, but I got off of them very easily when I finally got a Methadone prescription. I feel that this is big win, even though I will have to deal with getting off of the Methadone at some point. I am hoping that the natural remedies will work when my brain settles from all the DA years.
I have read in several replies references to ‘natural remedies’. What ‘natural remedies’ are you talking about??
Hi Woody
We are all so different ... and what works for one does not work for another.
After having tried different ways of taking Gabapentin, with different amounts at different times, I am finding what works for me is taking 300mg at breakfast, 300mg at lunch, 300mg at 5.00pm and 600mg before bed. That way, there is a constant amount of Gabapentin in your body.
That seems to have stopped my day time shuffles, and my appalling night time shuffles, particularly before bed time, which sometimes had me looking as if I was going through cold turkey for 3 hours ....
Worth a try!
Warm regards, Sally
Yeah, it has been amazing to me about how one thing can work wonders for one person and be of no value to another. I have been taking 300 mg of gabapentin in the afternoon and 600 mg of it before bedtime for 3-4 months and it has been working great for me. Also take 2, 50 mg of tramadol 3 times a day.
Not what you're looking for?
You may also like...
Gabapentin not working
I took 300 mg at 7.30 pm and 600mg at 9,30pm I woke up at 3.30 am legs were worse than night before,
Can Gabapentin Stop Working?
in bed around 9. For the past couple of weeks this dosage and routine have not been working well,...
Gabapentin not working
200mg of Gabapentin and have been for the past week (I stated on 100mg for the first 2 weeks),...
Gabapentin not working?
Ropinerole and moved to Gabapentin over the course of the summer. I’ve been up to 1800mg a night...
Gabapentin and sleepless nights
managed to come off ropinarole and now entirely on Gabapentin.
At present on600 mg nightly. Heavy...
Related Posts
Magnesium spray hasn’t worked! 
Gabapentin not working as yet
Gabapentin not working - next steps?
4th night in a row with no sleep!!!
Three Nights in a Row!?!Moderation team
KaarinaAdministrator
