Dammit! I’m FINALLY off the pramipexole and have apparently entered gabapentin hell. THIS was Mayo Clinic’s solution???? Note to all, they haven’t learned anything.
The doctor increased my dosage to 900 mg. I took one 300 mg capsule at 6:00 pm, took 2 more at 8:00 pm. Went to bed at 10:30 and I’m still awake at 2:30 am. All of a sudden I’m kicking LIKE CRAZY. It controls it for 4 hrs? I’m not waking up to take medication in the middle of the night! Why am I not sleeping all of a sudden?? I’ve been sleeping without any sleep aids for MONTHS, now all of a sudden I can’t fall asleep no matter how tired I am? I was up until 3:30 am last night! I’m exhausted and now I’m going to start kicking again and am going to have to start all over again with one new drug after another???? Someone just shoot me. 😡
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Leeserann
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I'm sorry for your problems but I am not sure it is the gabapentin. You are still in withdrawal from the DA. You were mentioning you were having problems sleeping before. And you were and perhaps still are taking a number of medicines that make RLS worse. Give it some time and yes if necessary try taking some gabapentin when you wake up. You have only been on it since 6/28 and are still taking a low dose. The fact it works for 4 hours is encouraging.
Thank you, Sue. Can't figure out how to delete the duplicate post. Maybe when I'm less sleep deprived. I'm going to list my meds so that you can see what I'm on. I think I stopped everything that you said was contraindicative to RLS. I'm no longer taking the Metoprolol, Miertazapine and Pramipexole.
You only stopped Pramipexole 4 weeks ago. Your body has probably just caught up and is starting to show withdrawal symptoms. They can last weeks/months.Also, gabapentin takes 3 to 4 weeks at FULL dose to be effective. You've only just started it.
900mg is a low dose. The average dose is 1200 - 1500mg so you can increase slowly by 100mg every other night until it covers your RLS.
You can also try altering the timings so you take the last dose just before bed, so it lasts longer during the night.
Seriously, your comments were so vital - for some ridiculous reason, I had it in my head that once I was off it, I'd be fine. Logic says, every drop in the medication is going to followed by a response. I just didn't apply that logic to the final drop. I have no idea why but that was it for sure. Thank you so much for your help.
I'm very sorry that you're finding the withdrawal and switch to a new medication a struggle.
But I read that you were on the slow poison that is pramipexole for 25+ years and were augmenting: complete withdrawal after such a long time takes longer than anyone would hope, and it takes time for gabapentin to become fully effective.
Jools and Sue (and many others on here) have been through exactly what you are experiencing, but now have their RLS symptoms controlled - either by gabapentin/pregabalin or by a low dose opioid.
So sorry but all you can do is try more drugs. For me some work, most don’t and then you try again. Also you struggle to find a doctor who will write the scripts that you need /want to try. I’m 71 and I think and worry about RLS every day. I’m sick of it always hanging over my head. Hopefully you have time for a solution to come about but it’s not a priority in the medical community unless they know someone closely who has RLS., so good luck.
Were you given any opioids for your withdrawal from pramipexole? I was only on a low dose of it for 18 months but the withdrawal was still horrendous and I needed opioids to get through. I went straight to opioids as I’m contraindicated from the alpha 2 ligands but they often give opioids whilst you titrate up on gabapentin (although there’s an increased risk of respiratory depression that is unlikely but you’d need to be careful of). It’s even the recommendation from Dr Andy for those who need it.
Yes, my pcp did give me the gabapentin and told me to start it during the last phases of weaning. I just didn't realize that the last drop off wouldn't be the end. I should have - common sense would tell you to expect it but it just didn't register for some reason. I'm so glad it's over! I couldn't have handled it if it had dragged out longer.
Please perservere, it will be worth it honestly, I tried twice to take gabapentin, the 1st time I gave up after couple weeks and went back on ropinerole, I felt immediately better but couple weeks later, had to swap to pramipexole, that was when I asked Sue etc for help again and I'm completely off those horrendous drugs now. 6 months in I sleep most nights, when I wake I take a 100mg tablet if not too late in the night as after 5am I tend to get up and do things to lesson the effect. My dosage is 600mg around 6pm and then again at 8pm as I go to bed early., but do alter if i go.out in the evening. You will get through this and it is worth the withdrawal symptoms believe me. I hope you feel better soon.
I found that when I tapered off Prami, even very slowly and with taking .5mg of Buprenorphine, I had breakthrough RLS, although mild. As it was mild I toughed it out instead of adjusting Buprenorphine. It took a good 4 months for that to resolve.
I wish these docs that still prescribe the DA’s would prescribe low dose Opioid for withdrawal. I tapered off once with no other medication and it was miserable. With the Buprenorphine very easy, even with the mild breakthrough after the final dose.
WOW, you're way stronger than I am. I was out of my mind. Thank God it's over. I did it in just under two months. I did it faster than recommended. Probably why I was having trouble.
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Made it to the finish line!!! I'm officially off the Pramaprexole, thanks to Jools and Sue!
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