Gabapentin

[Mari]

Hello Trina,
I take Gabapentin, and find them to be really successful in controlling the nerve pain. It used to be frequent and horrible! Now I occasionally get some break-through nerve pain but generally it works well. It does absolutely nothing for the other types of pain though. I have put on weight but that's probably nothing to do with the tablets!

Mari x

[Trina]

Cheers Mari... I think I'll stick with //tablets a day until I can work up the courage to take // (//times a day) as they do tend to space me out. I still haven't felt any benefits as yet but I have only been on them a fortnight. How long do they take to get into the system before they work?? Or is that just down to the individual??

Thanks again!!

edit to dosages - sorry but its a site rule not to mention dosages (site admin)

[Mari]

Hi, it's probably down to the individual, but I think it took a few weeks before I could tell it was working.
Mari x

[nat05]

I was given it by Dr H in august but wasnt having nerve pain. It helped me sleep for first few weeks but think that was more placebo affect, ie was desperate for relief so slept but prob wasnt drugs!

Now im getting nerve pain from elbow its not touching it at all Am not sure if it is much use as sleep is worse than when on amitryptaline. Will be getting it reviewed in Feb but does any one know if it is prescripbed other than for nerve pain?
xx

[Retro]

Hi Nat,

The only other thing I know of that it's prescribed for (in high doses) is Epilepsy.

It may be that you're dose needs increased but I'm sure there will be a maximum dose for use other than as an anti-epileptic. Your doctor may decide to try an alternative.

Lindsey

[nat05]

Thats what i thought. hmm? Will question Dr H in Feb. Gonna have to be a long appointment at this rate...
Ta retro
xx

[Mari]

Hi Nat, I agree with Retro, your dosage might need looking at. As Retro said, Gabapentin is used to help control epilepsy but is used at lower doses for nerve pain. The pain nurse who prescribed it for me said it sometimes helps with other types of pain as well, but I haven't found it makes any difference at all to that. Maybe Dr H felt it might help in that way?

Mari x

[nat05]

That would be my guess. I will ask about dosages ect when i see him.

One of my pain managemetn friends commented that until all meds are out of system often ist hard to know if it is actually helping and i think shes right. We may say its not doing anything but if it wa all stopped youd no!!

Something to ponder on
xx

[jayne]

I hav'nt been around for a while. i have been prescribed gabapentin after a very bad spell with neck pain. It was so bad I was unable to move and was vomiting with the pain. It is the first time I have taken this type of medication and I am having quite good results, the pain isnt gone but is more bearable. I was so happy with my new gp when she listened and offered to help.

[Englishgremlin1]

sounds like a good GP you have their.

[sarahh]

Hi Jayne glad to hear the gabapentin is helping and well done your new gp for listening. Hope you neck settles.

Sarah x

[CathyE]

I've recently been prescribed gabapentin - basically to try and control autonomic dysfunction problems and nerve pain. I'd put on a lot of weight over the last year, after loosing 6 1/2 stone, but there was no reason for it at all. I'd lost the weight over a 2 yr period and stayed exactly the same (to the pound) for 2 1/2 years. Along with lots of other problems my GP was persuaded (ha ha) that it was autonomic related. He prescribed me gapapentin to help control the messages going to my brain (as weight gain, no matter how you restrict your diet is a side effect of autonomic dysfuntion). Well, I was a bit wary about starting the tablets because of the weight gain side effects, but thought after deliberating for 2 weeks, that if the weight gain was being caused by the messages getting confused to my brain then if the gaba controls this then maybe the weight gain would stop.

I went back to see my GP after the first 3 weeks and the weight had stopped going on - which I already knew, but was happy that I had proved my logic to the medical profession, as he had been a bit skeptical that the reason I had put on weight was because of over eating, even though I stressed to him on more than one occasion, that this was not the case. He was, to be honest, quite shocked that I had managed to stop gaining weight - as up until then it had been between 1-2 lb a week. It hasn't helped me loose any, but to stop gaining it is such a relief. Now 7 weeks in it's still not going on! Thankfully.

Since taken gabapentin I have found myself to be a lot brighter and more able to deal with day to day things. I can only describe it as a sort of numb to the world feeling - (not sure if that will make sense to anyone else), the only bad side effect is that I seem to be falling over, slipping, tripping and walking into things a lot more. After speaking to my cousin who is a trained cancer specialist nurse, she said that gaba does tend to effect people's gait. So I suppose when us with HMS already suffer with less propreciperation (sorry if I've spelt that wrong) (proprioception) skills, it will decrease the small amount that we do have. I'm just going to have to try and re-train my brain again!

Would be interested to hear if others have had similar experiences.
Cathy

modnote: slightly edited to aid searches

[Retro]

Hi Cathy,

Funny you should mention the gait problem, I've been falling over a lot more recently but then I've been on Gabapentin for a couple of years

Lindsey

[barkingmad]

Cathy!!! You're here!!!

Am interested in what you had to say about the gabapentin...I put on weight without honestly overeating by working nights...I honestly didnt believe prof G and another rheumy when they said that was why and by not working I would start losing, which I did, have gone down one and half stone since gave up. Will have to sdiscuss it again at Pain Clinic, they offered it once, I said no due to potential weight gain...keep us informed Cathy.

Lindsey you are slipping and sliding due to exhaustion,..take a break!!

[nonyanomemory]

Normally the dosage of AED's is started conservatively to help avoid common side effects and sometimes it is worth persevering with them as over time side effects do tend to subside. Husband and son have epilepsy but both on different aed's and me on gabapentin small dose for pain, we have a little experience of them... son found he experienced enormous hunger and appetite increase with his and myself similarly with the gabapentin when I first started it but I found being quite strict about recognising this as a side effect, drinking a glass of water really helped when I knew that my supper was nutritionally sound and it was the drugs making me think I was hungry helped a lot. The gait problem is a well known side effect of aed's and can be problematical - it normally manifests as staggering which I suppose with the hypermobile would increase falls. Hopefully if it is a new symptom with the start of taking a new medication it should eventually subside, the brain is very good at compensating and should eventually adjust. I found that if I took a dose too late at night initially the staggering was much worse the next day. If the staggering is a new thing after taking it for some time, not due to overdoing it, it may be worth having a blood test to check for levels in blood are ok, as the staggering can be a sign of toxicity with some aed's. My gait is still poor for other reasons and regularly do the falling backwards trick with windmill arms to try and compensate but over a fairly short time the staggery stuff decreased, its hard isn't it weighing up the side effects and the efficacy with meds! I have heard the hypothesis re weight and night shifts previously, can't remember where though.

(Because this is about med's please note this is just me and my families personal experience of aed's, I am trustworthy but am not a doctor, if you'll excuse the bad pun )