My Gabapentin Dilemma

[Sleepless82]

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.

[Madlegs1]

First off, are you taking any medications that might be triggering the RLS?

Antihistamines, antidepressants ,statins, PPIs(stomach protectors) and others can all trigger RLS.

Please list all the meds that you are on, and we'll go from there.

Second- do you take any form of magnesium? This will absorb the Gabapentin and lessen it's effectiveness.

Come back with that information and we'll see what's going on for you.

All the best.

[Sleepless82 in reply to Madlegs1]

My other medications are:

Lamotrigine / Lamictal Odt - 100mg for Seizures

Alfuzosin HCI ER - 10 mg for prostate BPH and Finasteride / Proscar - 5 mg for prostate BPH

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.

[Madlegs1 in reply to Sleepless82]

Thanks! I'll leave Sue to address those. She already has given some good advice!👍

[SueJohnson in reply to Sleepless82]

They are all fine.

[SueJohnson]

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.

[Sleepless82 in reply to SueJohnson]

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!

[SueJohnson]

The maximum amount of gabapentin is 3600 mg.

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.

[Sleepless82 in reply to SueJohnson]

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.

[SueJohnson in reply to Sleepless82]

Yes you will need a maintenance dose.

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...

[RiversW in reply to Sleepless82]

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.

Rivers

[Sleepless82 in reply to RiversW]

Thanks RiversW.

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.

[Sleepless82 in reply to Sleepless82]

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?

[SueJohnson]

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.

[Sleepless82 in reply to SueJohnson]

Thanks Sue. I agree that his plan is terrible!

I have altered his plan on my own and am currently taking 600 mg Gabapentin and 100 mg of Pregabalin. But now I’m trying to get him to increase the Pregabalin prescription dosage so I can complete my transition to replace the 1200 mg Gabapentin with 200 mg Pregabalin.

Then, once I’m completely off the Gabapentin, I guess my next battle will be reducing the Pregabalin.

I’m curious, why do you switch from Pregabalin back to Gabapentin? Since, as you say, the Pregabalin is more convenient. For me, the 2 hr apart Gabapentin doses are really inconvenient. That’s one of the reasons I agreed to try the Pregabalin. I have to take a medication every 2-3 hrs. I take 600 mg Horizant at 5-6 pm, then 600 mg Gabapentin at 8 pm, then another 600 mg at 10-11 pm and I have to figure out when to take my Lamotrigine.

Regarding the Horizant: Do you think I’ll have any chance of eliminating the Horizant? I think you originally recommended to stop the Horizant first. But my doctor wanted me to try the Pregabalin first.

[SueJohnson in reply to Sleepless82]

I don't mind the 2 hour apart dosing as I have an alarm on my computer where I am for the 5:15 and the 7:15 doses and a timer I set for the 9:15 dose when I am always in the kitchen reading after dinner. For me I find the very slight side effect I have on pregabalin keeps me on gabapentin. Plus that is what I started on.

You'll never know whether you can eliminate the Horizant unless you try it.

[Sleepless82 in reply to SueJohnson]

Well, I have several side effects that are impacting my quality of life. I’m taking Horizant, Gabapentin and Pregabalin; and any one of them can cause side effects. But add them all together and you can get a bad mix.

(Well, here I am, editing my reply at 3 am, because my nightly visitor won’t let me sleep. Yep, she’s my nightly unwanted companion.)

I have sporadic blurred and double vision that come and go. I’m lethargic and have no motivation to do anything which is a real change for me because I’ve always been very active. But my biggest side effects are cognitive. When speaking I know what I want to say but often can’t remember words. So other people have to help me finish my sentences. I joke about it and tell them it’s the d&*n meds I’m on. But it’s very frustrating when I’m in a group setting. My family members probably think I’m loosing my mind. Well, as my kids would say, l’m a hot mess”.

[Sleepless82 in reply to SueJohnson]

I just had my iron rechecked last week. The test was at 8 am after fasting over night. The results: Iron total is 95. Binding capacity is 312. Saturation is 30%. Ferritin is 180.

My last Gabapentin was on May 29. I am now taking 200 mg Lyrica plus 600 mg Horizant . It seems like some of the Gabapentin side effects have been reduced but I have some new side effects from the Lyrica. And I am still struggling with the dang cognitive issues. I get very frustrated with myself when I know what I want to say but can’t put together the words to express my thoughts. I can see the angst in other people’s faces as they struggle to help me but don’t know what the heck I’m trying to say.

On a real positive note, I’m very fortunate to live within driving distance to Dr. Buchfuhrer and have an appointment with him this Friday. (I have to pay out of pocket but I’m hoping it will be worth it.) I don’t want to waist his time, or mine, but I don’t know what he will need from me. Can you suggest any specific information I should take or any questions I should ask him during my appointment?

[LotteM in reply to Sleepless82]

Hi sleepless, I just read through your story and interaction with Sue. Maybe it will help to write down your RLS history and medicine history. You write clearly (I don’t know about the effort it takes you), but you say speaking is far more difficult due to the search for words. If needed you let him read rather than listen.

Do not forget to list the side effects you are experiencing. And bring your iron results, also earlier ones. No need to being the Mayo Clinic paper!

I expect from what we know about Dr Buchfuhrer that he will prescribe you buprenorphine. He often uses Belbuca, that comes in low doses. I hope you will have no trouble filling a prescription if you get one. Are you in the same state as dr B? (CA).

Good luck. Let us know how it went.

[Sleepless82 in reply to LotteM]

Yes, I am in California.

Thanks for the suggestions. I already have a detailed list of all medications I have tried for my RLS and I can take all iron test results. My RLS journey is quite lengthy so I’ll try to write a brief history of my RLS.

[SueJohnson in reply to Sleepless82]

LotteM has given you some good advice. Definitely ask him about the side effects you are having with Lyrica. You probably need to come off it. If so I advise reducing by 25 mg every 2 weeks.

[Sleepless82 in reply to SueJohnson]

Yea, I’m still taking Horizant as well as the Lyrica. So I’m wandering which one he’ll want me to reduce first. Or which one is easiest to stop.

In addition, I haven’t had a seizure in two years but all these drugs have warnings that stopping them can cause seizures. I sure don’t want to trigger one now. That would really complicate things. Don’t want to make things any worse than they already are.