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Having a grotty time due to gabapentin withdrawal

Discussion in 'General Treatment' started by Calathea, Jan 22, 2012.

  1. Calathea

    Calathea Darkness therapy

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    I was put on gabapentin/Neurontin a few months ago to see if it would help with neuropathic pain, plus it helps with sleep and even with ME symptoms in general for some people. We ramped the dose up to 3000mg, realised that it wasn't doing much for me and that it wasn't worth the side-effects, and ramped it down again by 300mg a week. I started the tapering in November, and I also went to a family wedding for a couple of days in mid-November which knocked me back. So when I felt awful afterwards, I assumed it was a crash from the wedding trip. I started mb12 and then metafolin, and got a lot worse once I got the mb12 up to 500mcg. At the time I just thought I was reacting to the mb12, but after chatting to Rich I realised that it may have been the combination of that with the gabapentin withdrawal, or even just the gapapentin withdrawal alone. So I went off those two supplements, picked up marginally, and will give them another shot when things have settled down.

    The main things I noticed over the last few months were that my sleep was poor, which I realised was the gabapentin since it had made me sleep like a rock when it was being increased, and my digestion was all over the place, which is hard to spot because I get GI symptoms as a reaction to pretty much anything. Then there's the fact that I have an unhappy gallbladder, possibly causing an unhappy liver, and we reckon this is why I've been getting itchy skin and hormones all over the place. My GP took some blood tests on Friday, including a liver function test and some hormones, so I'll see what's happening there. I'm due to see a surgeon about the gallbladder on 8 Feb, and rather worried since right now I'm not remotely well enough for even the outpatient appointment, let alone major surgery.

    Meanwhile, I had my last dose of gabapentin on Monday a week ago, which was 300mg, and rapidly got a lot worse. My sleep promptly went completely to pot, to the point where even with impeccable sleep hygiene, darkness therapy and 20mg of temazepam, I would be up all night and eventually have to take some codeine (pain gets worse when I'm sleep-deprived) and then another 20mg temazepam because I was not just lying awake feeling jittery, I was having a strange fit of shaking/jerking. Sometimes I'm not sleeping at all until a few hours mid-morning (normally my sleep pattern is good due to the darkness therapy, it hasn't been this bad in about four years), sometimes I'll then be up all day and sometimes I'll then sleep half the day and the whole of the next night. It seems to be quite variable, including how I respond to sleep meds. I haven't dared take the temazepam for more than three nights running, it's too addictive. I know that I can tolerate it for three nights in a row, and that when I once tried seven nights in a row I got rebound insomnia, but I'm not sure exactly where my limit is in the middle of that; I just don't want to make things worse at the moment.

    Last night I went for lots of valerian instead, and did feel pretty sleepy but was kept up for a few hours by diarrhoea, which had been going on for much of the day as well. I keep getting nauseous, mainly bang in the middle of meals so that I have to get up, find a sublingual Buccastem tablet, and wait for it to take effect before I can finish the meal. I'm also really cold, particularly the extremities, apart from occasionally where I'm suddenly roasting hot and pouring with sweat (again, meals seem to be a trigger here). My basal temperatures have been gradually dropping for the last couple of months, even though I've been taking more ginger which usually sorts that out. On Saturday a week ago I collapsed after getting out of bed to open the blind, though thankfully my support worker was still here so I promptly got rescued, put back into bed, warmed up with my beloved heated throw and given some food.

    So now that it's all come to a head, I'm realising that the gabapentin withdrawal might be why I've been feeling so thoroughly crap for the last couple of months. The end is hopefully in sight, now that I'm entirely off it, but I could do without being so ill at the moment. I will try to get hold of my GP again during the week and find out if there's anything she can suggest, although I did make it reasonably clear how bad I was when she came over on Friday. Does anyone have a clue how all this works, and how I should tackle it?
     
  2. LaurelW

    LaurelW Senior Member

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    I'd like to know too. I started taking gabapentin last month due to some pretty bad pain issues. It helps a lot--now if I take 200 mg. at bedtime, I seem to get better sleep and feel well enough during the day to not take pain meds. I know I'm on a pretty low dose, but I'm concerned about possible side effects. I took up to 300 mg. a night a couple years ago, and didn't seem to have much effect when I went off, but hearing stories of others makes me wonder if I should try to keep it at 300 mg. (which I occasionally take during the day) or below.
     
  3. Calathea

    Calathea Darkness therapy

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    It sounds like it's doing a lot for you, and at a relatively low dose, so it's probably worth experimenting with cautiously. I'd suggest monitoring both your dosage and your symptom level, and making any increases or decreases very gradually and in full consultation with a doctor. I suspect that I'd have been better off going from 300mg to 200mg to 100mg rather than just coming off it after 300mg, but since I've already been off it for nearly a week, I'd rather not move backwards and prolong the whole experience if that's at all possible.

    I forgot to mention that I've also been getting eyelid twitching for a good few weeks on my right side, if that means something useful to anyone. Here are the meds and supplements I'm on:

    Prescribed
    Adcal (Vitamin D and calcium) 2x daily
    Alverine (for IBS) 3x daily
    Cetirizine (antihistamine for the itchy skin) 1x at night

    Supplements
    As assortment of EFA oils, totally 2.5g daily
    General multivitamin, morning
    1 capsule Country Life Coenzyme B complex, morning
    500mg ginger, 2x daily (for feeling cold)
    25mg zinc gluconate, evening
    100mg Co-Q10, lunchtime
    200iu dry Vitamin E, morning
    Occasional 150mg magnesium malate for GI balance, e.g. if I've just had to take codeine which makes me constipated

    Electrolyte mix
    Not just electrolytes, but they're all powders so I mix them together and have them throughout the day in herbal tea.
    D-ribose
    Acetyl L-carnitine
    Low-sodium salt (half sodium chloride, half potassium chloride)
    Magnesium ascorbate (i.e. Vitamin C)
    Magnesium citrate

    I haven't dared have any of the electrolyte mix today, I'm worried that the magnesium will set off the diarrhoea again. I am also trying to work out what on earth it would be sensible to eat for supper tonight.
     
  4. taniaaust1

    taniaaust1

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    Hi Calathea, sorry to hear you are currently trying to sort things out too. (my sleep too is currently shocking).

    My specialist has told me not to take temazepam for more then 5 nights straight and that is only to help to try to shift sleep cycle where it should be... and then from there only 2-3 times a week.

    I have a suggestion if you havent tried it already thou right now may not be the right time to try something new but this may be helpful to you, its been very helpful to me thou my sleep issue isnt pain caused (heapsreal suggested following to me).... the over the counter Sleep Aid (anti-inflammatory drug) Doxylamine Succinate.

    What Ive realised more lately is there seems to be some kind of inflammatory process in the ME and that drug not only helped me to sleep a little bit better but also had a postive after affect (I felt healthier while on it) which stayed there even after stopping it (due to currently trialing the Temazepam... my current specialist dislikes supplements but said my last appointment that those two drugs are safe to take together).

    Some kind of inflammation in my body when I crash.. seems to be able to cause at times bone pain and muscle pain. I suspect that if I was not currently trialing the Temazepam and still on the Doxylamine Succinate I would not have had the joint and muscle pain I had the other day. (Im soon going to be taking the Doxylamine again)

    As far as the strange fits of shaking and jerking... that can also be a symptom of ME. I had that issue for years which at one point ended up going to a constant quite severe problem which then had me end up in hospital (doctor called an ambulance on seeing it) in which was diagnosed as having rhythmic myoclonus. When I had that symptom I used to get eye twitches too which as things worsened.. ended up getting an issue in which my actual eye ball was appearing to shake at times (which others could see).

    I just want to say that if it turns out not to be issues with withdrawal and rather a symptom shift in the ME.. try not to worry too much as that too can and probably will pass.

    best luck
     
  5. Calathea

    Calathea Darkness therapy

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    Thanks for all the suggestions. Thankfully the sleep at least seems to be improving, though my sleep phase is still a little off (not really up to shifting it just yet) which means that I'm sleeping in the morning, and for the last two weeks there has been noisy building work outside my window for eight hours a day. Which really doesn't help. I'd be terrified of taking the temazepam that much! Is it less liable to cause addiction when used a few nights a week, then?

    As for the Doxylamine Succinate, I was about to say, "Bugger, I can't take NSAIDs orally at all, they attack my stomach too fast." But then I looked it up and it's actually an antihistamine. I don't remember doing so, but I appear to have looked it up before, so someone else here must have mentioned it. I was put on an antihistamine to see if it would help my sleep a while back and didn't get anywhere with it, but I have no idea offhand what it was, apart from not cetirizine that time.
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    your right its an antihistamine, phenergan is another goodie for sleep as well.

    cheers!!!
     
  7. Valentijn

    Valentijn Activity Level: 3

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    If gabapentin was helping, the underlying problem might be elevated levels of glutamate, an excitatory neurotransmitter.

    One way to lower glutamate levels is by taking N-acetylcysteine (NAC). The NAC combines with glutamate to form glutathione, thereby lowering glutamate levels and creating something beneficial at the same time.

    My sleep has been normal since I started supplementing NAC in the evening. It doesn't stop pain, but when I'm uncomfortable now I just wake up, shift a bit and fall back asleep, instead of being wide awake with my brain running at full speed for a couple hours.
     
  8. Calathea

    Calathea Darkness therapy

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    *looks up NAC prices*
    *squawks in horror*

    Rather out of my budget, I'm afraid, especially on the off-chance.

    After picking up slightly, I am now back to feeling absolutely bloody awful. This time, I think it could be due to a new med I've been put on for nausea, metachlopramide (honestly, who names these things?). I started it on Thursday, 10mg 3x daily, though I think I may have had the odd double dose due to having breakfast and lunch almost at the same time, or one day when a support worker had put two tablets into the same compartment. On Friday and Saturday I had migraine, which is normal for this time of my menstrual cycle, but what is not normal is that a dose of co-codamol and valium taken on waking (which yesterday meant 5 am) knocked me out until the afternoon. After that, I was weirdly jittery, heart thudding, the usual chilliness, occasionally shaking, unable to rest, but unable to stay fully awake, and at some points unable to focus my eyes properly for hours on end, along with more diarrhoea (which after codeine is a surprise). I'm sitting up at the moment, and my blood pressure is 132/73, which for me is quite high (I tend more towards 90/55), with pulse of 73. No idea what that tells you.

    It just occurred to me that it could be the new med, so I fish out the leaflet, and guess what, it can cause all sorts of fun with side effects. It also says that the dose is correct for adults, but for children who are 30-60kg they recommend half that dose, and I only weigh about 46.5kg. Well, that could explain a few things. I thought I was starting to go into some sort of serious drug withdrawal and was suddenly addicted to the painkillers or something. I have left a message for NHS24 to ring me back in the hope that they can suggest something useful, and am contemplating whether it would be safe to take 2mg valium in the meantime. I honestly don't know whether that would help, but it seemed to a certain amount with the jitteriness last night. Damn it, this is my partner's weekend, I wanted to spend some time with him rather than being conked out again. Does anyone have any helpful suggestions, based on how this drug is meant to work? NHS24 will be hours calling back, and then I'm unlikely to get anything useful out of them.
     
  9. Calathea

    Calathea Darkness therapy

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    Update: a GP from NHS24 rang back remarkably quickly. I must have ticked off one of their priority boxes. She advised me to stop the meto-whatsit and try 2mg valium, and thankfully I am now feeling a lot better and far more like myself. Now back to the joys of gabapentin withdrawal, eh.
     
  10. Valentijn

    Valentijn Activity Level: 3

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    I get them for 20 euros for a month's supply ... doesn't seem so bad to me :p
     
  11. LaurelW

    LaurelW Senior Member

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    Thanks for the info on NAC, Valentijn. I'm going to try it and see if it helps. I found a powder at nutrabio.com that isn't very expensive.
     
  12. robertpcx

    robertpcx

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    Hi Calathea, I just found this page and have been reading your posts regarding your gabapentin withdrawal, I likewise was experiencing withdrawal from gabapentin I was taking between 2400 milligrams and 3000 milligrams at bedtime for over 10 years. About a year ago with the consent of my doctor I began to taper off of gabapentin 300 milligrams per week and in about 2 weeks I began to experience withdrawal (nausea lack of appetite headaches and ageneral bad feeling (just a sick feeling) discussed with my doctor the withdrawal I was experiencing and she agreed that it was withdrawal but she gave me no advise as to how to lesson the withdrawal so I decided to search the internet for answers and found a suggested use of magnesium supplement, I then remember reading an article about a clinical trial double blind study to see if Epsom salt (magnesium sulfate) bath would increase magnesium levels in the blood and they confirmed that magnesium levels do go up. So as I was desperate for relief from the gabapentin withdrawal. I added 2 cups epsom salt to a half full bath tub of water and soaked for 20 min or so. And I allso added 1/4 teaspoon epsom salt in a glass and added about 4 oz. of water and stirred it well and swished spsom salt around in my mouth a couple times a day and then spit it out. Don't swallow the epsom salt or you will get diarea. I no longer was experiencing any withdrawal after about 48 hours. I spent 11 months trying to taper off gabapentin and was unsucessful and then with the help of the epsom salt I was able to be gabapentin free in less than 2 weeks. I think the problem is a magnesium deficiency and as soon as I increased my magnesium levels the gabapentin withdrawal went away. Today was my first gabapentin free day and no withdrawal. I kept up the 1/4 teaspoon in a half full glass of water brobably 3 to 4 times for the first 2 days untill I began to feel better and now I have droped back to doing it after each meal as after I eat is when I felt the worst. Some soft stool yes but no withdrawal from the gabapentin. Yahoo!

    Hope this helps.
     
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  13. LaurelW

    LaurelW Senior Member

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    That's great, Robert! I recently went down from 300 mg. to 200 mg., and I had some symptoms even at that small of a dose--extra fatigue, slightly irritable for about 2 weeks. I will definitely keep this in mind when I go all the way off.
     
  14. xks201

    xks201 Senior Member

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    Take some gaba. According to my doc who rxed me gabapentin...it is basically high dose gaba.
     
  15. August59

    August59 Daughters High School Graduation

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    Gabapentin can stop you from entering "REM" sleep, so yes there could be some sleep issuses. I have taken it several times and stopped, but I never went near 3000mg.

    You could also try some diphenhydramine (Benadryl) 50mg for a few nights if needed, but it builds a tolerance pretty quick. It is also lost pretty quick to, so you could take it again after another week and so on.

    It looks as if you have got some good advice so far though.

    I will say one thing related to me is if I was taking 20mg of temazepam it would completely override any neurontin withdrawls thoughbased on my much smaller dosage
     

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