Gabapentin augmentation?: I have... - Restless Legs Syn...

Restless Legs Syndrome

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Gabapentin augmentation?

Aujamw profile image
26 Replies

I have recently been having increased symptoms in arms, legs and torso earlier in the day. I am taking 1500mg gabapentin. I didn’t consider it may be gabapentin augmentation because I had heard it doesn’t cause augmentation like the Mirapex I suffered from severe augmentation. Is it possible that this is gabapentin augmentation?

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Aujamw
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26 Replies
SueJohnson profile image
SueJohnson

No you can't augment on gabapentin. Have you started any new medication or increased any? Have you done anything different like changed what foods you are eating , increased your exercise, started an OTC product?

Aujamw profile image
Aujamw in reply to SueJohnson

No not that I can think of. I am very aware of most things that aggravate RLS so I am puzzled. I asked my doctor for an iron infusion as that has helped before. My levels aren’t to terribly low—but thought it might help!

Horses7 profile image
Horses7

Yes I would say it is. They tell you it won't cause augmentation however I have found it does.

Wordsworth99 profile image
Wordsworth99 in reply to Horses7

Hi DerDon, that is interesting. What do you take nowadays to help your RLS? Regarding the gabapentin, it would difficult to determine whether the medication is causing the disease/disorder to worsen (called augmentation) or the RLS is becoming worse due to other factors. In my mind, if the cause of the RLS has not been fixed e.g nutrient deficiency, there is a high likelihood that the disease/disorder will get worse overtime. I’m very interested to get your feedback on why you think you had augmentation on gabapentin, particularly as I’m just starting Pregabalin which is similar. 🤔

Horses7 profile image
Horses7 in reply to Wordsworth99

I wasn't specific sorry, I've been on mirapex .25 for over 10 years and was getting augmentation. I'd get rls in the afternoon, early evenings and more often in the arms. I put up with it for quite a while cos I heard the horror stories of how hard it is to get off the Dopamine Agonists, I've done a lot of my own research and joined the RLS Foundation. I find the Dr's aren't up on the latest information and treatment regarding rls, even my Neurologist/Sleep Disorder Specialist said that it wouldn't be augmentation on that low a does, she figured my suppertime dose wasn't lasting me so wanted me to take 1/2 at noon as well. I knew it wouldn't help however I decided to follow her advice anyway, the rls was better for the first two weeks then it came back with a vengeance (as I figured it would). I went back to her and she put me on pregabalin 50 mg to start. I researched this drug and there are some horror stories regarding any meds in the gabapentin family which I think pregabalin is, not positive tho?? I should back up a bit, I was working on getting off the mirapex, I got to half the dose and said enough of this cos every time I'd shave off a tiny piece for the next few nights I'd wake up and my whole body would be restless and I'd end up in the lazy boy for the rest of the night, I'd only cut back a "very" small amount every week. I've heard that the last half is the hardest to get off of and some never do so I decided to go back to the Neurologist and get something to help while I'm decreasing the last half of the mirapex and get off of it for good. She put me on 50 mg of pregabalin to start. The Pharmacist said not to start decreasing the mirapex till I'm on pregabalin for 2-3 weeks as it takes that long to get in your system. It hasn't been a week yet so I can't tell you how I'm doing on it. My head feels wonky and I have a very dry mouth (which is normal) I want to stay at the lowest does possible cos pregabalin is not easy to get off of either.....oh joy. It's quite the journey however my main goal is to get off the mirapex completely and at the same time hoping I can tolerate the pregabalin and that a low dose will keep my rls at bay. Even before I started meds for rls I only had it about every 3 days and it was moderate "not" near as severe as the augmentation. I should add I'm 71 so of course lower doses are supposed to be effective, here's hoping. Feel free to ask questions, we learn from each other.

SueJohnson profile image
SueJohnson in reply to Horses7

It's not hard to get off pregabalin - just reduce by 25 mg every 2 weeks and you would have no withdrawal symptoms.

Horses7 profile image
Horses7 in reply to SueJohnson

Thanks that is really good to know thanks. Do you have any idea what dose of pregabalin usually works for rls on someone who is over 70, I know age can make a difference in drug dosing.

SueJohnson profile image
SueJohnson in reply to Horses7

According to the Mayo Algorithm most patients require 200 to 300 mg.

Horses7 profile image
Horses7 in reply to SueJohnson

Oh wow......I was hoping 50 to 75 would do it for me especially where I'm considered "elderly". I find I can't fall asleep at night as quick as I used to before, once my head hit the pillow I was out, now I find I can lay there for an hour or more before I fall asleep. It says it can make you sleepy however can it also make you more wide awake. One more thing if you don't mind I've heard you can gain weight on pregabalin, do you know the % of that by any chance?

SueJohnson profile image
SueJohnson in reply to Horses7

Let me address everything. First off why did you say the doctors at the RLS foundation aren't up on the latest information and treatment regarding RLS because they certainly are? Maybe you meant doctors in general which is certainly correct.

Of course your doctor was wrong when she said you can't augment on that low a dose as you knew. You can augment even on .125 mg which is the lowest dose.

Your pharmacist is correct. It can take 3 weeks for pregabalin to be fully effective and it won't help much until you are off mirapex for several weeks and your symptoms have settled. But since it is not going to help you much there is no reason to not start reducing mirapex. He is wrong about that.

After you are off mirapex and your symptoms have settled you can increase your pregabalin by 25 mg every couple of days until you find the dose that works for you.

There are horrible stories about almost all drugs even life saving ones and aspirin.

You are having some side effects from the pregabalin but most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms.

Pregabalin and gabapentin are both alpha 2 delta ligands and act similarly and one can switch from one to the other directly without weaning off them by multiplying the pregabalin dose by 6 to get the gabapentin dose. They are taken differently though and the side effects are similar although the side effects that bother one on one of these may not bother one on the other. Weight gain is more likely with pregabalin and occurs in 2 - 9%. Generally it is a result of increased appetite and a decrease in moderate exercise.

Pregabalin is taken in one dose 1 to 2 hours before bedtime as is gabapentin as the peak plasma level is 2 hours. On gabapentin if one needs more than 600 mg one takes the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If one needs more than 1200 mg, one takes the extra 6 hours before bedtime. If one takes magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin as I mentioned)."

Since you are having trouble coming off off Mirapex you can get an inexpensive jewelry scale on Amazon ($11) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks not 1 week. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

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.

Horses7 profile image
Horses7 in reply to SueJohnson

Thank you for the extensive reply, it's a big help, there is a lot of info to digest. First I'd like to say that I meant family Dr's aren't up on the latest rls info and/or treatment and as I mentioned earlier even my Neurology/Sleep Specialist wasn't, she's the one who said I can't augment on such a lose dose of mirapex (.25) even tho I've been on it for close to 10 yrs. I knew she was wrong cos I was experiencing augmentation big time. I just had blood work done however haven't gotten my results yet, I asked for the serum ferritin, TSAT and B12. I do take Effexor 75mg however I need it, other then that I'm not on any meds that affect rls. I don't take gravol or drink red wine as those will give me restless legs. I'm hoping I can get off the mirapex totally with the pregabalin alone and not have to take an opiod, my family Dr. already said "I'm not going there" when I mentioned an opiod although the Neurologist/Sleep Specialist said she would, to me it would only be another drug I'd have to fiddle around with tho. I was literally shaving a piece off of mirapex as in using an exacto knife...lol I was decreasing every week so will wait the 2 weeks now as you mentioned. WHY on earth is it so hard to get off of??

SueJohnson profile image
SueJohnson in reply to Horses7

Effexor is an SNRI antidepressant and can make RLS worse for many. The only safe ones are Wellbutrin and Trazodone.

Horses7 profile image
Horses7 in reply to SueJohnson

Just curious if you are a Dr who specializes in RLS or a very knowledgeable person who suffers from this?

SueJohnson profile image
SueJohnson in reply to Horses7

I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others.

Horses7 profile image
Horses7 in reply to SueJohnson

That's fantastic, good for you. I'm so glad I joined the RLS Foundation, I find it very informative and have watched some "current" videos on treatments etc. Did you have trouble getting off the ropinirol, what dose of gabapentin works for you cos I know everyone is different?

SueJohnson profile image
SueJohnson in reply to Horses7

I had an excellent doctor who helped me get off ropinirole after my first doctor just kept increasing my ropinirole up to the maximum of 4 mg and it still didn't work - a classic sign of augmentation. I am on 1500 mg of gabapentin.

Horses7 profile image
Horses7 in reply to SueJohnson

Which would you say is better pregabalin or gabapentin or it depends on the person?

SueJohnson profile image
SueJohnson in reply to Horses7

Neither are really better. They both act the same.

Horses7 profile image
Horses7 in reply to SueJohnson

Ok thanks.

DesertOasis profile image
DesertOasis in reply to Wordsworth99

Hi there W99, I noticed from your profile that you are number 63 (and counting) for whom ferrous bisglycinate provides immediate relief. See third reply down healthunlocked.com/rlsuk/po...

I would think twice before going for a second infusion. It will provide no immediate relief and will stop the iron at night trick from working because your hepcidin (the irongatekeeper) levels will be sky high for days if not weeks.

I believe that magnesium works for many because it is a weak dopamine antagonist. You antagonize the receptors and they grow bigger and stronger. You agonize them via DAs and they become weaker. If you stop either the magnesium or the DA for a long enough period of time the receptors will work their way back to baseline. So magnesium needs to be taken on and off for a lifetime. Let’s see if I can find an article about how magnesium blocks dopamine release.

Edit: From this VERY long article “Magnesium can directly reduce dopamine release at the presynaptic level and can also reduce the stimulatory effect of glutamate on dopamine release.”

ncbi.nlm.nih.gov/books/NBK5...

PLUS, I just found a comprehensive review I did of iron infusion success (?) stories on this board. Bedtime reading

healthunlocked.com/rlsuk/po...

Wordsworth99 profile image
Wordsworth99 in reply to DesertOasis

Hi DesertO, thanks so much for your advice and all that information. It’s extremely interesting. I always enjoy reading your posts and replies so I’m delighted to get a message from you. It’s from you that I learned the iron bisglycinate trick, and also I’m wondering was it you who wrote some time ago that perhaps one day we will conclude that the cure is regular intakes of iron bisglycinate, berberine and magnesium threonate? That has become my mantra. First the goal was getting off the Pramipexole, which I did recently, and now I’m on Pregabalin as an interim step to becoming drug free while I try to “cure” myself of RLS. Exercise seems to be very important also, I’ve noticed. I started getting RLS in my late 30’s, which surely means that it’s reversible if, and it’s a big IF, I can correct what went wrong! Thanks again for your message, it’s much appreciated.

DesertOasis profile image
DesertOasis in reply to Wordsworth99

Yep, that was me with that advice. Have you tried berberine? It’s a stronger D2 dopamine antagonist than magnesium and not to be taken at night. You have to either buy a highly bioavailable form or add quercetin to it. Otherwise over 95% of it will just make its way to your large intestine. Berberine supposedly also “agonizes” the excitatory D1 receptors. That’s a good thing because DAs are well known to up-regulate these bad boys and agonizing them will down-regulate them. Researchers debate whether it’s these up-regulated D1 receptors that cause more of the problems post-DA than even the down-regulated D2 receptors. And yes, you can get back to baseline and treat your RLS naturally with things like intermittent fasting and anaerobic exercise (among the other substances we discussed) that have been shown to up-regulate dopamine receptors - in everyone, not just we with RLS.

Wordsworth99 profile image
Wordsworth99 in reply to DesertOasis

Yes, I’m taking Berberine, though sporadically. I take 500 mg just before lunch. It’s Berberine HCL. I will need to research whether that’s highly bio available or not. What do you take? Thanks for the information about D1 receptors. That’s very interesting. Now that I’m off the DA I will be making a bigger effort to take Berberine regularly, and a good form of it naturally. Regarding magnesium. I‘ve been taking it when I go to bed! The magnesium threonate makes me sleepy, so it’s been the best time to take it. Hmmmm, not sure what I’ll do now. Thanks for your reply, you are a wealth of information!

DesertOasis profile image
DesertOasis in reply to Wordsworth99

How has your sleep/RLS been lately?

Wordsworth99 profile image
Wordsworth99 in reply to DesertOasis

It’s ok, not brilliant. However after nearly 10 years on the DA, and only 4 weeks since I stopped, I don’t expect miracles! I sleep in 2 or 3 hour blocks, needing to stretch and/or take iron bisglycinate each time the RLS wakes me up. This way I do get 8 hrs sleep and, surprisingly, quite a bit of deep sleep. I’m now on 200 mg Pregabalin, which I’m slowly increasing and 60 mg codeine, which I’m slowly decreasing. How has yours been lately? I hope you’re sleeping well.

DesertOasis profile image
DesertOasis in reply to Wordsworth99

You’re doing fantastic!. We only wish everyone could do this well after 10 years on a DA. I’m always able to control my RLS via the iron except when I was on Trazodone, then it was a struggle. I’m not sure why it’s considered RLS friendly. It increases serotonin - that almost always means it’s going to hinder dopamine release, which is painful for us with RLS. The last important key for myself and several others on here is to not eat dinner late. And not so much as a cracker after 10pm. Keep me posted.

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