Alarming episode: Am on Gabapentin... - Restless Legs Syn...

Restless Legs Syndrome

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Alarming episode

michou profile image
8 Replies

Am on Gabapentin 400mg which works only 50%; also suffer from insomnia independently of RLS. . My doc prescribes me occasional Zolpidem when she takes pity on me and the odd Zolpiclone. Last night exhausted after 3 sleepless nights I thought I would treat myself to a Zolpiclone - last one in packet of 6 this time prescribed by hospital. I drifted off into a deep sleep - bliss - only to be woken up 90 minutes later by the most extraordinary sensation like someone had plugged me into the electric current. I jerked upright with terrible sensation in all my joints - arms, wrists, legs, ankles. Needed to shake my arms and legs. I still had a foggy head from the pill but was awake enough to realise that this could to be a terrible augmentation episode.

I got up and had a glass of milk, some crackers (my nighttime comfort food) and took a codeine, shook legs and arms and body and the feelings subsided and luckily feel asleep again. I am now rather worried about tonight. Never in my 40+ years of RLS have had I such a dramatic episode. I have taken Zopiclone before but mostly take Zolpidem which mainly, but not always, works to get me to to sleep. Does that ring a bell with anyone on this forum? I can still feel he faint aftermath in my arm joints.

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michou
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8 Replies
SueJohnson profile image
SueJohnson

I can't help you with your strange problem, but can help you with your RLS symptoms. 400 mg of gabapentin is a very low dose so it is no wonder it is helping only 50% of the time. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. 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, take it at least 3 hours before gabapentin as it interferes with the absorption.of gabapentin. Have you had your ferritin tested? If so what was it? Increasing it to 100 or more reduces symptoms in 60% of people. If you take any other medicines or over the counter supplements, if you list them here I can tell you if any of them are likely to exacerbate symptoms and can perhaps give you a safe substitute.

michou profile image
michou in reply to SueJohnson

Thank you - I have been thinking of asking my doctor to increase the dose but she is a bit wary of the drug; she did test my ferritin and said it was OK. I think I will give her the Mayo article. I take magnesium in the morning and that has helped with the sleeping a bit when the RLS doesn't kick in. I take loads meds and supplements as well as the gabapentin: Amlodipine 10mg; Xarelto 15mg; Bioprolol 1.25mg; Fluvastatin 20ng; Omeprazole 20mg; Loperamide 2mg once or 2 a day; magnesium taurate; turmeric; glucosamine; Diaralyte 2 or 3 sachets a day and Zolpidem as and when. codeine as and when and any painkiller Co-codamol or paracetamol as and when. There you are - it sounds awful when you list them all!

SueJohnson profile image
SueJohnson in reply to michou

Amlodipine is a calcium channel blocker which can make RLS symptoms worse for some. Clonidine is a safe substitute. Bisoprolol is a beta blocker which increases PLMS symptoms for some but probably not RLS symptoms. Omeprazole is a PPI and can interfere with iron absorption but otherwise is OK for RLS. You might want to switch from the blood thinner Xarelto to Dipyridamole which has actually been shown to help RLS symptoms in some and even eliminate them in some. Lescol is a statin and statins are known to exacerbate RLS symptoms in most people. My husband lowered his cholesterol from 221 to 131 by going on a vegan diet. As far as your ferritin, ask her what it was as what is normal for most folks is not normal for those with RLS.

michou profile image
michou in reply to SueJohnson

Thank you. Will give this to my doctor when I can get my next appointment

BeachGolfer profile image
BeachGolfer in reply to michou

The last time I took Omprazole I spent the whole night walking the floor and up and down the stairs! This medication could be exacerbating your RLS.

draycott1 profile image
draycott1 in reply to SueJohnson

I have been taking Gabapentin for 22 years. Initially for neurological pain following a major op. The daily dosage must have been at least 2400mg. After a few weeks of feeling like a zombie the treatment worked. I found I was left with periodic RLS which was completelyunknown to me. I had a large supply of the tablets and started taking one a day. I persisted

with this routing for several years until finding I needed 2 300mg tablets to keep the RLS wolf from the door with fairly good results. It occcurs to me that taking 1800mg daily must be leading down the zombie trail.

Best Wishes

Ralph

Seaux profile image
Seaux

This is something you MUST see your doctor about. I hope you are seeing a neurologist.

PoorRichard profile image
PoorRichard

As SueJohnson noted some of us got relief with supplemental iron. My Ferritin was in the low normal range (117). But normal is insufficient for me. I raised it to 284 - works wonders. Get your actual Ferritin number. Also eliminate RLS risks, like sugar.

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