I took pramipexole for about 10 years. I was taking 2-3 pills of .125 when my RLS worsened in September/October. I have read on this forum that it took about two weeks for things to settle down while others said it was almost a year to feel normal. I suppose, I am looking for some hope that things will get better. I tapered down and started gabapentin (300 mg) about a month before I completely stopped taking half of the .125 dose. I then increased to 600 then 900. 900 mg, seems to be making my legs worse. I am taking 1-2 tablets of Tramadol and it seems to help some. I am wondering if anyone has had the same experience of gabapentin not really helping? Also, is it possible that it is just taking me longer to adjust to not taking the pramipexole. My sleep doctor is a neurologist and does not want to prescribe opioids--the Tramadol was given to me for fibromyalgia. I am trying to work full time but getting such little and fragmented sleep is taking its toll on me. Thanks for listening. Oh, my ferritin iron is quite high as I have one gene for hemochromatosis--I know that is usually the first thing that is suggested.
How long did take it take for your le... - Restless Legs Syn...
How long did take it take for your legs to settle down after getting off Pramipexole?
Gabapentin won't make your RLS symptoms worse, so it is possible that you are just taking longer for your symptoms to settle down. It is also possible you are not taking enough gabapentin. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily" I would keep increasing it by 100 mg every couple of days. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you get to 1800 mg and it is still not working then after so many years on a dopamine agonist you may have permanent damage to the dopamine receptors and gabapentin may not work. Are you taking any other medicines or magnesium?
Thanks for your reply. I will try bumping up the gabapentin. I am on thyroid medication but I asked my doctor to go on the next lowest dose to see if it helps… I don’t feel a difference. I have done magnesium, but not consistently. I am hoping things will begin to improve.
If you do take magnesium in the future, be sure to take it at least 3 hours before the gabapentin as it will interfere with the absorption of gabapentin. Unfortunately thyroid medicines with exacerbate your RLS symptoms.
Really? Thyroid meds make it worse. Great! I also take Prozac which i hear is bad for rls too.
Yep. A safe antidepressant is trazodone. One article reported on a patient that actually showed improvement of RLS with trazodone.
I figured the thyroid meds could make it worse so that is why I reduced that a bit.
Hi Sue-we have messaged before. I just posted now about help with getting off the Methadone, as I can't find anyone to prescribe it and the withdrawal is RLS hell. I did not know that thyroid meds worsened RLS?! I take 60 mg of Armour Thyroid. I also do progesterone and estrogen bioidentical hormone creams. Would love your thoughts...is it ALL thyroid meds? This one is supposed to be more natural. Thank you!
In looking through your old posts you mentioned being on bioidential hormones. I missed that - I guess because of the TeddJ, I assumed you were male. I am not sure about that, but certainly estrogen makes RLS much worse which is why RLS often first presents itself in pregnancy or gets worse in pregnancy since estrogen is up then.
thank you. what about the thyroid medications? specifically Armour? they worsen it, too?
Yep
Hi, I was wondering how you were doing the other day and here you are. Yes HRT makes the symptoms of RLS worse, but not our precious D2 receptors. I would hate to think you started on the DAs because of increased symptoms from HRT?
Studies have shown that baby mice with removed ovaries ended up with nearly 30% less dense receptors. HRT reversed this. I would imagine that it does this because it is a dopamine antagonist of sorts. So you have probably done yourself a favor by taking HRT this whole time, though you have suffered terribly. Women wonder why their RLS gets worse with, or after menopause, well it’s because those receptor building hormones have dwindled. However, as with anti-depressants, you can’t do both - meaning have RLS and take them.
Anyways, now is the time to stop the HRT. Plus, you’re 6 months out from the DAs (right?) so I bet your receptors have crawled their way back to baseline which I, for one, believe have been somewhat maintained by your use of HRT. Wait till it’s out of your system then try tapering down the methadone. You also have to stop the berberine when you’re tapering. And you must take the ferrous bisglycinate at night and fast after 7pm till breakfast.
Feel like a little wager? I bet you will be able to reduce without a problem, if you follow the above, and go slow. We need to see what your RLS is like without the methadone, but while you still have some in stock. Then you can explain all this to your doctor. If you find that you still have mild to moderate symptoms you might want to give the Gabapentin another shot. Or maybe you’ll find 2.5 mg of methadone is all you need and a doctor might be more willing to prescribe such a low dose. No matter what, I always tell people to first take the iron and if after an hour they still have symptoms, then move on to the lowest dose possible of the opiate. Time and fasting is your friend, my friend. As the weeks and months go by, I am all but certain you will see an improvement in your RLS.
I’m also beginning to think that ghoulish night you had when you ran out of methadone was compounded by the fact that you are on HRT. I’m always giving this progesterone cream I have a shot. Inevitably I wake up at 4am with RLS in every part of my body and my whole body buzzing. We with RLS can’t handle any substance in our system at night that is a dopamine antagonist. Remember that movie The Exorcist? Give me melatonin and watch me turn into Ms. Blair. I start chewing on iron tabs the way you did your refill of methadone that time.
pubmed.ncbi.nlm.nih.gov/874...
gosh, LonePine-thank you for such specific help! I have never been told that the hormones affected my RLS and I have never even thought of that until I saw the above posts from Sue. Same with the Armour. I just thought my RLS was from the vegetarian diet and low ferritin combined with the augmentation of the ROP and PRAM. and you are right-i have no idea what baseline is but I had thought I would find that out after getting off the DA's with Methadone. I never thought I would create a such a nightmare for myself: the monthly terror of will I or won't I get more methadone. nor did I know withdrawing from METH made RLS so bad!
anyway, I have been out of touch while traveling to mexico etc. i was doing fine on the methadone, for the most part. taking 10 mg per night. I was planning to wait until spring and the next doctor visit to re-evaluate and see if I was far enough away from my DA use. then suddenly he said he was under review due to some other patients testing positive for cocaine, blah blah and he no longer wants to put himself at risk. he also said the fact that I was coming from the city to the suburbs to get it made the feds suspicious. even though he is listed on the RLS.org website as help, he will no longer do so.
ok-thanks so much and i will read and re-read your advice and try it out. although i can't imagine stopping the hormones. that will cause all sorts of aging issues!! not to mention night sweats, etc. although I have so many sweats from the methadone and also the hormonal issues that i have no idea which is causing the sweating. some nights i am up several times a night with massive sweats. i have lost weight, which is super odd, but that part is great.
fyi, i stopped the DA's at the very end of August 2021. BUT, I then had about a 10 day period where I went back to them-the withdrawal night and many nights around that time. That was in Oct. or Nov. Not sure if that matters or no. I'm sure I will be going back to them, sadly, if your advice doesn't work. Which is beyond sad to me, after all I did to get off the DA's. That's how BAD this all is now!
Could I just do the progesterone and estradiol cream in the daytime, perhaps? I really am not keen on stopping those.
thank you, thank you! xoxo
I think aging has more to do with genes, Sun exposure, and luck than HRT. Do you still have your ovaries? They will continue to produce small, but definitive quantities of hormones until around age 80. “It’s not nice to fool Mother Nature.” Sadly, we were meant to go through menopause and the world found out the hard way what happens when you take HRT, especially estrogen, for too long - increased incidence of breast cancer. I guarantee that your hot flashes are no longer being caused by menopause but rather the HRT. The hot flashes will fade once you stop the HRT and give your body a chance to balance itself out - about 6 months. Plus I’m advising to only stop as long as it takes to figure out what your baseline RLS is which I believe is impossible to do while on HRT. Whatever RLS doctor you finally land on will be quite impressed when you describe what you have undertaken to resolve this problem on your own and they may not even know about HRT. You want that doctor to take this journey with you and you want to stand out to them and to bring good news to them.
Very interesting about the weight loss. Your receptors might be in a lot better shape than u ever dreamed.
Thank you so much! xo
After withdrawal from Ropinirole, I started on tramadol and gabapentin. They didn't help at all. Then I switched to 25mg Oxycontin and 150mg pregabalin. They were better but my RLS was still classed as severe on the International RLS scale.Gabapentin and pregabalin don't always work. Dr. Buchfuhrer talks about this in webinars. He thinks they don't work because of the damage done to dopamine receptors by years on Ropinirole or Pramipexole.
However, 900mg is a low dose. Try splitting the dose and taking 600mg 2 hours before bed and 300mg at bedtime. Gabapentin is poorly absorbed above 600mg.
If that doesn't help, increase to 1200mg and split in 2 doses of 600mg.
Pregabalin is better absorbed as is Horizant and Dr. Buchfuhrer thinks both work better for RLS. I know in the USA price and insurance limits what is available.
Unfortunately, if splitting the dose, increasing it and switching to pregabalin don't help, low dose opioids would be the next step as set out in the Mayo Clinic Algorithm.
It took me 5 years to find the right meds and cover for my severe RLS after getting off Ropinirole. I'm now on 0.4mg of Buprenorphine and for the first time in over 10 years have zero RLS and am sleeping 8 hours at night.
It can take months/years to find a combination of meds that works for you.
Thanks for taking the time to reply. I will keep working to find a solution. I feel that I am probably going to have to retire a bit earlier than expected as it is so difficult to work when exhausted.
It's really, really tough and RLS should be classed as a disability as it has a much greater effect on your ability to work than other neurological diseases.I think you're in the USA and,if so, methadone and Buprenorphine are more available than here in the UK ( if you can find the right doctor).
Methadone & Buprenorphine are highly effective at low dose.
Have a look at Dr. Winkelman's Massachussetts opioid study.
If you're in long beach, then you could see Dr. Buchfuhrer at Downey by tele appointment and he would sort out your RLS.
Hello, I had been on pramipexole for 12 years. Found the gabapentin helped for a short time after coming off the pramipexole, but then it started to give me that awful creepy sensation in my arms. I find that even worse than the jumpy legs, so have given the gabapentin up. Now I am existing on codeine and tramadol. Take 2 codeine 30 mg throughout the evening and 50 mg tramadol to go to bed. It's not great, but can usually enjoy watching tv in the evenings, and go to sleep instantly when in bed. After that generally get up twice per night without too much jumpiness. Can stand and read a book for an hour before returning to bed for another two hours. Generally get about 6 hours sleep per night. I am retired, so can have short naps throughout the day which helps. I find if I increase the tramadol that backfires on me and makes things worse, so have to stop taking that for a few weeks before it becomes effective again. Good luck!
That is strange. I have never heard of gabapentin causing an awful creepy sensation in one's arms. It is certainly not listed as a side effect.
The creepy arms, are much better now I,m not on the gabapentin. Unfortunately I can't say the same for the legs.
The "creepy arm sensations" was probably caused by the pram. I never had symptoms in my arms, then I was put on DAs and now I get symptoms in my arms if I don't take an opioid.
Yes, iron deficiency would be the first culprit. But minerals in general are important. Magnesium helps a lot of people for a little while, then no more (one of the strange things about rls - a lot of things help for a while, then stop.) On the advice of dr Berg (see YouTube) I’ve started taking potassium. It helps considerably. You need high amounts, not the pitiful 99 mg that’s in most supplements. Go with potassium powder, therefore. Also, many vegetables are high in potassium. If you can handle making red cabbage juice in the evening - that helps.Most rls meds (which I would never use, because of their risk of augmentation) are dopamine-based. I get great relief from taking 400 mg of s-adenosyl-methionine (take in the morning, not evening.) Works like a charm within a week, AND is an antidepressant to boot. Caveat: as an antidepressant it doesn’t work for everyone - some people get worse on it. To do with undermethylation and overmethylation.
I also think the ketogenic diet may be of some help. I certainly get worse from some foods - and of course alcohol, which I avoid like the plague.
Anyway, have a try with SAMe and potassium. It might just help you.
I take Potassium Citrate 275 mg, brand name Horbaach. I'm in the US and get it on Amazon.
I will try that as well as magnesium… thanks all.
Hi, I'm sorry to hear how you are. I came off mirapexin just over 3 months ago after many years of mirapexin. I started taking gabapentin and slowly increased the dose. It wasn't so good. I then took pregabalin and have increased to 300mg. I'm fine all night as long as I take 50mg tramadol. I also take magnesium and my ferritin is 140. I have the best sleeps in years. My tramadol is also for rotator cuff but it's even better for rls. Good luck
Thanks to all. I am going to try some of the suggestions….
Not what you're looking for?
You may also like...
How to come off pramipexole
getting off pramipexole
Please advise:What should I take for RLS after getting off Pramipexole and Ropinirole?
Taking Gabapentin and Tramadol whilst weaning off Pramipexole
Needing to get OFF Pramipexole
Related Posts
How can I get off Pramipexole and treat RLS without drugs
Coming off Pramipexole after augmentation.
how do i get off pramipexole?Moderation team
