Does anyone take gabapentin and lions... - Restless Legs Syn...

Restless Legs Syndrome

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Does anyone take gabapentin and lions mane together?

Missmykitty profile image
12 Replies

My husband bought me some lions mane for my nerve damage in my legs. I take gabapentin and have been taking it for over a year. It was working for awhile , but now I am being woke up in the middle of the night and during the day with aching and throbbing . I also feel like the gabapentin has made me gain weight. The reason we believe I have nerve damage is from long covid. I have had many of tests done and they couldn't see any other reason for the pains I am having. I go back to the specialist in a few weeks just to tell him the medication stopped helping and am nervous. I really don't want to do any more testing. So I wanted to know if anyone has had any good news with both the gabapentin and lions mane together?

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Missmykitty
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12 Replies
ChrisColumbus profile image
ChrisColumbus

Welcome to the forum.

Lion's Mane mushrooms occasionally get mentioned here - rather inconclusively. One former member was going to trial for a period and report back, but they never did. There are various reported benefits:

webmd.com/diet/what-are-the...

Are you taking gabapentin for RLS - characterised primarily by the irresistible urge to move the legs to get relief? Or are you taking it for neuropathic pain relief?

The usual effective dose for RLS is between 1200 and 1800 mg daily, taken in the evenings, in divided doses not exceeding 600 mg at a time two hours apart: how much are you taking and when?

You've been taking gabapentin for a year? Have you previously taken other medications for RLS?

Missmykitty profile image
Missmykitty in reply to ChrisColumbus

I am not really sure. The specialist believes it's nerve damage . I have been taking gabapentin for over a year now 100 mg for 3 times a day. And lately my legs have been so achy and sometimes hard to sleep . I go back to him the end of the month and will be letting him know I'm back to square 1 . Sorry for the late response, but I take care of 3 grandchildren.

Joolsg profile image
Joolsg

I have MS and RLS and take a similar drug to gabapentin, called pregabalin. I take Lion's Mane for my MS.There has so far been no problem at all.

Gabapentin does cause weight gain and Covid does cause severe Central Nervous System damage from microclots in the blood.

It sounds as though you do NOT have RLS, but nerve damage.

The current advice on Lon Covid groups I follow on Twitter is to take a non sedating anti histamine every night, as the Covid virus attaches to histamine receptors. Others take Nattokinase, a herbal blood thinner to deal with the microclots and Alpha Lipoic Acid.

They are all supplements I took for 18 months with pregabalin and no side effects or interactions.

Missmykitty profile image
Missmykitty in reply to Joolsg

I've tried pregabalin and was having side affects with that medication. I will try the lions mane and see if that helps. It's in liquid form. What do you put yours in? I really am not a mushroom fan.

Joolsg profile image
Joolsg in reply to Missmykitty

My Lion's Mane is in pill form. I take with breakfast.

Missmykitty profile image
Missmykitty in reply to Joolsg

Well darn ! I wished he would have gotten the pills it would have been easier to take.

SueJohnson profile image
SueJohnson

Welcome to the forum. You will find lots of help, support and understanding here.

I can't help you with nerve damage but I can address your RLS.

Joolsg says she doesn't think you have RLS so lets check. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

Do you meet all of these?

Assuming you do, it is not unusual to need a little more gabapentin the first year you take it. Since it was working. Try increasing it by 100 mg and after 2 days if that doesn't work another 100 mg.

If that doesn't work you may 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. If you are prescribed one of the others be sure you are given enough to take them that often.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Are you continuing to gain weight or has it leveled off? If you are continuing to gain weight you will probably want to come off 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 very few or no withdrawal effects.

If you continue with gabapentin take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If 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, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it at Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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 ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

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, C, 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.

Missmykitty profile image
Missmykitty in reply to SueJohnson

That is a whole lot to take in. Now I'm wondering if it is nerve damage or not. I do have alot more aching when I sit or lay down , but sometimes when I walk it's no different. I do need to change some habits and see if there is a change. And the weight gain is horrible.

Guitarpickin profile image
Guitarpickin

Hi and welcome! I take gabapentin each night (200 mg which is a very low dose) for PLMS and RLS and I have powdered mushrooms (including Lions mane) each morning in my coffee. I have never had any problems and in fact, I really like it and believe it actually helps. But if I’m being honest, I’m not sure what, exactly, is the thing that actually works, all I know is that when I go on a long vacation and am only on gabapentin mixed with nightly THC, my RLS, PLMS, and tingling feet get much worse. At home I take a whole litany of naturopathic type things, like the powdered mushrooms so it’s hard to know what is doing the trick. Lions mane certainly can’t hurt (unless you’re allergic) so give it a try! I hope it helps!

Missmykitty profile image
Missmykitty in reply to Guitarpickin

Thanks I will give it a try. I just am really nervous about mixing anything unless prescribed by a doctor. I really don't like taking pills period , but sometimes this is so unbearable I have to do something.

Guitarpickin profile image
Guitarpickin in reply to Missmykitty

I’m sorry you’re suffering and it’s good to be cautious. I don’t know everything you’re taking (it sounds like just gabapentin?) but it would absolutely be worth your time to google the drugs and supplements you take to see if there is an interaction with lions mane or anything else you’re interested in trying. If taking something makes you nervous, that added anxiety could negate any beneficial effects anyway. It sounds like you’re only on 300 mg gabapentin taken in 100 mg increments throughout the day. If you’re like me and your primary problem is sleeping, you may want to consider taking the 300 mg all at once 2 hours before bed. It’s still a very low dose and targeting it to the time of day when you need it most could really help. Another thing that might help is to briefly get out of bed when your legs wake you in the night and do a 30-60 second calf stretch on each leg and see if that allows you to sleep. It sounds too simple to work but it’s a reliable source of help for me if I’m having a bad night.

Missmykitty profile image
Missmykitty in reply to Guitarpickin

Yes I am only taking gabapentin. My husband bought me the lions mane , but I haven't touched it. I won't even take aspirin when I have headaches. I just don't like taking anything. I go back to see the specialist for my legs on the 29th and now have to reschedule that day for another health situation. I will see if my doctor will up the mg . I just wish they wouldn't make me gain weight. And for getting up and doing stretches will be hard for me when I have to wake up at 1 am for work and raising 3 of my grandkids. Thanks for the advice.

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