Help! I need some advice regarding my Gabapentin treatments. This is my first post so I hope I don’t ramble too much.
I’m over 70 years old with RLS for over 30-40 years. Fortunately I don’t have RLS attacks during the day but have them almost every night after I fall asleep. On high doses of Gabapentin’s I get only 1-3 complete nights of sleep ever 6 weeks. The RLS attacks usually come after I fall asleep and each attack requires me to walk and/or partake in some kind of activity for at least an hour before going back to bed. My side effects are memory issues, what I call word searching, and some vision issues.
I’ve had several blood tests over a couple years and my iron levels are: Total Iron level is 61 to 110. Ferritin is 112 to 133. Saturation is 22 to 33%. Binding capacity is 275 to 291.
I took Pramipexole for over 30 years and it worked. Like many others, the dosage had to be increased as I got older and the RLS became more severe. And then I started experiencing augmentation and ICD. I was able to slowly taper off the Pramipexole about 2 years ago. Now, 2 years later, I’m still trying to find something that will work on my RLS.
So, 2 years ago I started Gabapentin with 300 mg which had no effect on the RLS. Over a 6 month period I slowly increased the dosage until I was up to 3000 mg which had only a minor impact on the RLS. About 6 months ago I was switched to Horizant so that I wouldn’t have to take so many pills. (Try taking 3000 mg each day when you should take only 600 mg every 2-4 hrs.). I am currently taking Horizant 600 mg at 5-6 pm plus 1200 mg of the Gabapentin. (That is 600 mg about 8 pm and 600 mg about 10-11 pm) But still, this has very little impact on my RLS. Now, my neurologist wants me to switch to Pregabalin. But I’m not sure if the Pregabalin is to replace the Horizant, the Gabapentin, or both.
Needless to say, I’m very skeptical that the Pregabalin will work any better than Gabapentin and/or Horizant since they are all a form of gabapentin. In addition, I’ve read that Gabapentin’s are not very effective for people that have experienced augmentation from pramipexol.
Now, finally! I have several questions: (1.) What are the chances that the Pregabalin will help? (2.) If I switch to the Pregabalin, is it a substitute for the Gabapentin, the Horizant, or both? (3.) And, if I switch, how would I titrate onto Pregabalin and taper off the others? … OR (4.) Do I skip the Pregabalin and try a narcotic like Buprenorphine, if my doctor will prescribe it?
Sorry to be so wordy. Hopefully I haven’t rambled too much.
Any input or suggestions would helpful as I approach this crossroad.
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Sleepless82
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I take one weekly B-Complex multivitamin with electrolytes .
About 3 months ago I started taking Iron 65 mg and 2 forms of magnesium. But I don’t take the magnesium within 2 hrs of taking my other meds. And, I’ve been taking gabapentin for 2 years.
I am experimenting with the magnesium. I have been trying glycinate 240 mg, citrate 250 mg and/or an oxide400 mg that includes calcium, zinc and D3.
Since they aren't helping at all and you have memory issues pregabalin isn't going to work so you need to come off them. You are taking much too much.
First stop the Horizant. Wait 2 weeks or until any withdrawal symptoms stop. Then for the gabapentin you need to do so very slowly to avoid withdrawal effects. Reduce by 100 - 200 mg every 2 weeks. If you do so you will have few or no withdrawal effects.
You will need a low dose opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
I agree the Gabapentin dosage is too high. It has been my concern for a long time. But 4 different neurologists have told me to keep increasing until I get relief. They say I can go up to 3900 mg. I have given them copies of the Mayo Clinic Algorithm but I’m pretty sure they don’t really look at it. They just put it in their files.
I am anxious and dread the idea of stopping the Horizant and gabapentin. I’m afraid of withdrawals. It brings back memories of my horrible withdrawals from pramipexol. Should I really stop the horizant first? It represents a large amount of my current total. It is 600 mg. That leaves me with only 1200 mg of the Gabapentin. I’m afraid this will result in raging RLS. Also, I’m confused by your statement to reduce the Gabapentin. “Reduce by 25 mg (100 - 200 mg) every 2 weeks.” (25 mg vs 100-200 mg?)
I have listed my other meds in my reply to Madlegs1.
I usually (but not always) have 1 or 2 cups of coffee in the morning. But no other caffeine through the day. I eat very little sugar because it is one of my triggers. My others triggers are eating too late and vigorous exercise. I journal what I eat but it would be very difficult to track each and every ingredient.
I’ve tried a lot of the things that are known to help but so far nothing really helps.
Oddly, it seems like the later I go to bed, the better my RLS symptoms. Example: Last night I went to bed at 1 am and the RLS didn’t wake me up until 6 am. 5 hrs sleep is very good for me!
Stopping gabapentin and Horizant is nothing like stopping pramipexole thank goodness. You won't get raging RLS as it didn't help your RLS anyway.
Yes, stop the horizant first because it is the easiest to do and won't take as long as stopping the gabapentin. You might want to cut the tablet in half so you only reduce by 300 mg and then wait 2 weeks before stopping taking it entirely.
Whoops on the "25 mg (100 - 200 mg)" - my mistake. Since I copy and paste frequent replies I use the same reply for pregabalin as gabapentin and forgot to delete what applied to pregabalin which is the 25 mg. It should have just been Reduce by 100 - 200 mg every 2 weeks. I will correct my answer above so no one else who reads it will be confused.
Thank you Sue. You are a wealth of knowledge regarding RLS treatments and this website is very fortunate to have your input. I sure wish I could take you with me when I go back to my neurologist this week. I could sure use your help in trying to educate him about RLS and updated treatments. I’ll take another copy of the Mayo-Clinic Algorithm with me and hopefully talk him into prescribing buprenorphine or methadone to help reduce any withdrawals from reducing my Horizant and Gabapentin.
Am I correct in assuming that a maintenance dose of buprenorphine or methadone will probably be needed after I get off the Gabapentin’s?
I must say, I’m a bit apprehensive about taking a narcotic. I read a lot of posts from people that seem to have bad side effects with narcotics. And, I’m fearful that the narcotics won’t work. I was very hopeful that Gabapentin would work for me. This has been a long struggle and I really need a win in this battle with RLS. Yes indeed, this has been a very long struggle.
Or another one to try AFTER you get off the gabapentin is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...
Hey Sleepless, Like you I was wary of taking an opioid/Buprenorphine for my RLS, but ultimately had no choice. Augmentation from Neupro was killing me. My experience with Buprenorphine may hopefully ameliorate your worries.
I withdrew slowly from Neupro about 8 weeks ago. Buprenorphine made the process so much easier than the time I had tried before to get off Pramapexole. I am now on a 20mg patch of Bup(the tablets are not available where I live) and I can honestly say it has turned my life around. I sleep well almost every night for the first time in 30 years. My side effects have been minor. Slight depression controlled with Wellbutrin. Some people suffer more severe side effects; nausea or constipation. I have been lucky in that regard. Good luck to you with whatever route you take. By the way, if you read my other post you will get a more complete and hopefully not too labored version of my experience withdrawing from a dopamine agonist and Buprenorphine.
I did check out your posts. Looks like you have struggled like me and many others. I will be talking to my doctor about buprenorphine in my appointment this week.
Well, I met with my neurologist this week and I completely forgot to ask him about dipyridamole. But we did have a talk about opioids. He seemed open to the idea of using opioids but his preference is Codeine instead of Buprenorphine or Methadone.
BUT, he first wants me to try Pregabalin (Lyrica). So here’s his plan:
1. For two weeks; Start me on Pregabalin 25 mg while continuing the Gabapentin 1200 mg and the Horizant 600 mg.
2. Then after two weeks; Increase the Pregabalin to 50 mg and reduce the Gabapentin from 1200 to 600 mg. While continuing the Horizant 600 mg,
3. Then after two more weeks; Increase the Pregabalin to 75 mg and stop the Gabapentin. While continuing the Horizant 600.
4. Then I think his plan is to increase the Pregabalin and reduce the Horizant.
Not sure how well this will work but I sure hope it does work. Like I said before, I could sure use a win in this battle with RLS. It’s been almost two long years since I came off of Pramipexol and I’m still trying to find a replacement that will help.
Any thoughts or comments regarding this new plan or the use of Codeine?
There was recently a post on a study showing that dipyridamole doesn't work if one has been on a DA for a long time as you were.
That is a terrible plan. You will have severe withdrawal effects. Since the equivalent dose of gabapentin is 6 to 1 (25 mg of pregabalin is equal to 150 mg of gabapentin for example), you will first be increasing the effective dose to 1350 mg, then decreasing to 900 mg and then decreasing to 450 mg.
You can switch directly from one to the other, I do it all the time when it is inconvenient to do the 2 hour apart doses.
So a better plan would be to switch from the 1200 gabapentin to 200 pregabalin.
Show your doctor this study Https://pubmed.ncbi.nlm.nih.gov/23018586/
As to the codeine. it is the weakest opioid and has to be taken every 4 hours or you will have mini withdrawals.
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