I have restless legs day and night. This causes me massive fatigue, pain and problems sleeping. Way back I started on Pramipexole which worked brilliantly apart from the side affects. Joining this forum I discovered the dark side of Pramipexole and came off the drug. Since then I have been on Gabapentin (1200 mgs per day) Unfortunately, it doesn’t seem to do much for me: I’m still in pain and I can’t sleep.
Two days ago I saw a neurologist who suggested an MRI scan and a nerve conduction to rule out anything else. He also suggested that Pramipexole might be the best, safe option given that it had worked previously. You can imagine my thoughts when he said this. He also suggested that Amitriptiline might be help with the sleep problem.
I am now confused - does anybody have any suggestions on a way forward? I remain hopeful. Many thanks.
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Amitriptiline made my rls really bad so I really wouldn't recommend that im in the early stages of pregabalin I've been taking it for 5 days now and keeping my fingers crossed that it works, I also take zopiclone at night to get some sleep, hope this helps
You could try increasing your gabapentin. Are you taking it the correct way? Ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. Since 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 take magnesium, even in a multivitamin, take it at least 3 hours before or after gabapentin as it interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin.
If you then find it does help you will need to come off it. Do so very slowly to avoid withdrawal effects. Reduce by 100 - 200 mg every 2 weeks. If you do it slowly enough you will have no side effects.
To control your RLS then you will need a low dose opioid. I would suggest buprenorphine as it lasts 24 hours so you don't have the mini withdrawals you can get from other opioids which mean you have to take them every 4 to 6 hours.
Thanks Sue and others for your help, but I am still confused as to what dosage I should be taking and when. Currently I take 300mgs at 5am, 300mgs at 11am, 300 mgs at 4pm and 300mgs at 10pm. With this programme, I am awake most of the night. Could you spell out how I might change this to get a better result? I don't know what to take in the evening - 300mgs is clearly not working. Apologies for being so thick about this, but I want to get the dosage right.
Follow my schedule to increase your gabapentin at night since this is when you are awake. You can also increase your gabapentin by 100 mg at each of the daytime ones until your symptoms are controlled although I would think you won't need to increase it by as much as the night time one. The maximum daily dose is 3600 mg.
Thanks Sue; your help is invaluable. I usually go to bed at 11.30, so tonight at half past eight I took 400mgs. My plan is to increase to 500mgs over the next couple of evenings. Then, as you suggest I can add if necessary. Does this sound like a plan? I hope I can make gabapentin work because I really don't want to have anything to do with Pramipexole, CoCodamol or Amitryptilin. One drug that works would be great.
I have said it before and I'll say it again - "You are a star."
Find a new neurologist! I spoke recently with the neurology team at Bart's and they seem up to date. They no longer prescribe dopamine agonists even for Parkinson's.
Any neurologist who suggests you go back on Pramipexole and also suggests Amitriptyline doesn't know the basics of RLS.
He's clearly never heard of the Mayon Clinic Algorithm.
If you could send his name to the Administrator, Kaarina, by private message, we can make sure no one else wastes their time visiting him for RLS.
We need a list of the Good, the Bad and the Ugly of neurologists on here. The Ugly can include those neurologists who tell us 'it's all in our head' or that we are drug addicts.
The bad can include those that are still not up to date and insist on prescribing dopamine agonists and those who prescribe anti depressants that worsen RLS.
The Good list can include those who ch3ck iron first, eliminate trigger meds, arrange iron infusions, prescribe according to the Mayo Clinic Algorithm. The Good list is very small at present, but hopefully, if more doctors start to do their research and learn about RLS, we can add more.
I would definitely see a neurologist. I am seeing one. He did tests and the MRI. He found a severe compression of my spinal cord in my neck, (not related to RLS) and had to have surgery as it became a priority. Now I will be going back to continue for the RLS as it usually would involve something lower in the back or something else.
I was desperately seeking sleep, but had to get up and walk to relieve RLS. One night I couldn't stand it. I just went to the floor and rolled on my belly. The I felt the RLS feeling dissipate, not go away, but ease up to where it allowed me to sleep. I tried it again the next two nights when I was ready for sleep. I was actually falling asleep. Then I tried the bed and it worked also. I still have RLS, but with my med's, 900 mg of Gabapentin. 2 at supper and one before bed, along with one 50mg of Trazodone before bed. As long as I am on my belly, I sleep. Not saying it will work for you, but it might be worth a try.
You didn't say how long you've been on pramipexole, but I was on it from 2008 until 2022. My PCP then had me transition to levodopa (Sinemet) which turns out to be another dopamine agonist. I decided I would consult a neurologist recognized as an expert on RLS, so I scheduled an appointment with Dr. William Ondo at Houston Methodist in Houston, TX (about a 4 hour drive from my home). I had to wait about 6 months to get my appointment. He and another neurologist in the group spent 2 hours with me providing an extensive evaluation and consultation. The final result was essentially this. Because gabapentin was unlikely to work for me because I had been on pramipexole so long and the transistion from pramipexole to gabapentin is so difficult (some describe it a pure hell!), Dr. Ondo recommended that I go back to pramipexole because of the factors I just mentioned and the fact that I'm 91. The dose of pramipexole I was on was not too high and could be increased if necessary. He wants me to do this for 6 months. If it doesn't work out, he indicated that he will probably then put me on an opioid. After thinking about it, I think his recommendation is probably the best option. I'll telling you all this because your lack of success with gabapentin my be because you were on pramipexole so long that you damaged the dopamine receptors in your brain so extensively that gabapentin isn't going to work for you.
Thanks for taking the time to share your story. It has certainly given me something to think about. To answer your question, I was only on Pramipexole for three months before alarm bells started ringing and I discovered this site. My problem is that Pramipexole is the one drug that has really worked. I am 75 and it is so tempting to return to a drug that kills the pain and allows one to sleep. When did life get so complicated eh?
I've suffered RLS for around 30 years. I tried all sorts of treatment from diet to medication including Ropinirole. The latter turned out to be a disaster. Initially it worked. Then augmentation happened, which means that the medication actually made the condition worse. Avoid Ropinirole like the plague.
So, I had to wean off Ropinirole. Then I went on an over the counter medication called L-Tyrosine which improved things, helped a little by -believe it or not- coffee. (I'm not a coffee drinker which I believe is important here). I'd drink a cup anytime RLS happened & it gave short term relief.
Still, RLS continued to disturb sleep and caused me to lack energy the following day, because without a good night's sleep we can't function properly.
So, I went to a different GP. I discussed Gabapentin with him but it's not licensed for use here (Ireland). So he put me on the following medication. The Brand name is Neupro; the medication is "transdermal patch rotigotine". It's a 1 mg patch that I stick to my skin each evening. And it works. Since I started I've had no RLS and I'm getting a respectable nights sleep. Initially, I had one side effect-headaches but that only lasted a few nights.
The only down side is that they're expensive -120 euros for 28 patches; but who cares if they work--- and for me they do.
I hope this is of some help.
I should mention that I haven't seen this treatment mentioned on this forum. Maybe it was and I missed it but my GP did mention that it's not widely used.
Many thanks for the heads up on that Sue. Neupro is still working very well and I haven't had an RLS problem since I started using it. Having suffered RLS for decades it's pure paradise to be RLS free and I'm therefore reluctant to stop using it. I note from a recent post that gabapentin is working very well for you. My plan is to stay on Neupro patches because they're working so well and then move to gabapentin if or when augmentation happens. Do you agree with that plan or should I move to gabapentin sooner. Again many thanks for support.
It's up to you. If it were me I would wean off it now while it is still working as it would be probably be easier but I can understand your reluctance to do so while it is still working.
Thanks for sharing your story. It's concise, clear and very interesting. I plan to investigate Neupro, as soon as I've replied to you. Thanks once again.
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