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?
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?
