Gabapentin

[Sue New]

Hi Guys,

When I saw the doctor at Stanmore on monday, she mentioned that she may prescribe Gabapentin for the nerve pain i ahve been getting. I seem to recall that there are a few people on the board who take this medication and I would be grateful to hear of anyone's experience of taking this drug.

Thanks in advance,

Sue.

[Retro]

Hi Sue, I just started on a low dose of Gabapentin last week and so far am not having any problems. I have started with one tablet a day last week, two this week then 3 next week. Back to the doc in the new year to see how I'm getting on. Only problem is I don't think my pain is neuropathic so I don't think it's actually helping me The one pain I do have which is nerve related is from my foot and it's certainly not doing anything for that so far!

Good luck, hope the new meds work for you.

[suzannehorne]

I have been on gabapentin for 4 months and also started on a low dose and worked my way up. I have found that the pain in my lower spine and the inside of my right leg has been relieved a little bit. However my mum was on gabapentin a few months ago because of pain related to spina bifida and she go no relieve at all. So it really just depends on the person. The only sign effect that I got was been I was put on a dose that was too high was that i was extremely sleepy.

[Sue New]

Dear Retro,

Thanks for your reply. I am sorry the Gabapentin does not seem to be helping you. I hope they find a medication that does start to relieve your pain soon .

Suzanne,

I am glad the meds seem to be helping you a bit. What is the pain like in your lower spine? Mine is like a scratchy, burning pain - as if someone is shaving off my skin if that makes sense. I also get this feeling in my neck and shoulders too. What about the pain in your leg? As well as the standard numbness and tingling, sometimes I get a feeling on my right shin as if the skin is bleeding or wet. I have even rolled up my trousers before to see if I have cut myself because the sensation is so strong. Most mornings now the whole of my lower leg is numb/tingly as well as my hands now Perhaps the Gabapentin will be able to help with these symptoms?

Take care, and thanks again both of you for responding to my post .

Sue.

[suzannehorne]

Sue New

My pain in my lower back is also a burning pain. When it is bad it feels like someone is pouring a extremelly hot cup of coffee over me. The pain is deep inside my back and does not feel near the surface. Sorry, that this explanation is not very good as it is so hard to explain.

[suzannehorne]

Sorry I did not read your post properly, The pain in my leg feels someone has cut the circulation off as it is so numb and when I get up in the morning i have to wiat before I can put pressure on my foot. Like you I also get this tingly feeling is my hands too.

[Mari]

Hello All,

I know I've been talking about this on my 'nerve pain' thread, but as it's specific questions about gabapentin, I thought I'd use Sue's thread (Hi Sue ).

For anyone with experience of gabapentin, I know it is supposed to work for nerve pain, but does anyone know if it's supposed to stop other nerve symptoms, such as tingling or numbness?

Thanks,
Mari

[Pixi]

Has this med caused anyone else to gain weight?


Thanks

[suzannehorne]

whe i first went on to gabapentine i put on over a stone in just a month or so.

[Retro]

Yikes! I'm on Gabapentin too. The last thing I need is to put more weight on! I think I'll be coming off it anyway coz the only pain it's helping is a little one in my foot.

[Mari]

Well folks,

It seems gabapentin are not working. I was trying to decide if they were doing anything at all, when this afternoon and this evening I have had a rather nasty bout of nerve pain. So that seems to be that. My pain nurse is ringing me tomorrow night, so we'll see what she says.

On the weight topic, putting on weight is listed among possible side effects as 'infrequent' - so wait and see.

Mari

[peekay]

Hi Mari and Sue,

When I tried Gabapentin I was advised that it would take a good 4-6 weeks to feel the full benefits if it was going to work for me. It is only supposed to help with nerve pain, and should be used in combination with a 'traditional' pain killer to deal with the bone/muscle pain we get, but if it does work on you, it should help to ease the symptoms of tingling and numbness though won't get rid of them completely. I personally found that gabapentin didn't provide any pain relief for me, and I never reached a point where the side effects subsided, in fact they seemed to get worse in terms of drowsiness, disorientation etc, and even though I usually have trouble gaining weight I rapidly piled on the pounds and put on more weight than ever whilst taking it.

However, I've found that gabapentin either seems to work like a total miracle for people, or be like my experience of it, and that luckily for those who can't tolerate gabapentin or don't get pain relief from it they are the ones who tend to do well and get pain relief from topiramate (on a general basis) Topiramate is not as well known for this use as gabapentin, but it's becoming more common, so if after the 4-6 weeks it's not working, I'd think it's worth asking about topiramate, which has the added advantage of being half the price of gabapentin. There's also a new medication of this type which a few people on the EDS site have mentioned they've had good results with, which is pregablin or lyrica...a friend of mine who's an anaesthatist mentioned there was a new medication to me a few months back, but couldn't remember the name of it though he knew it was getting good results, and it was this he was talking about. All these medications work by building up in your system though and so take time to see if they are working, one other thing that I found with topiramate is that it became increasingly more effective over the first six months I was taking it as it damped down the nerve signals.

I hope this is some use and that you get some effective pain relief soon, hugs P x

[Mari]

Thanks Peekay,

That's really helpful. I was told by the doc today that I could up the dose after a bit if it still didn't seem to be working. But if it takes a while, then I needn't despair yet! The pain nurse had asked me, after taking one dose, if I'd noticed any difference, because many people notice something straight away. I hadn't noticed anything but she said some take longer. When I speak to her tonight I'll tell her of your experience of it taking a while to work for some people. I wouldn't have expected immediate results anyway, because I don't have the nerve pain constantly. Fortunately it's intermittent.

I'll see what she plans next, but I'll keep a note of the other meds you mentioned, Peekay. I think I'll ask her for ideas about something to address the other pains, too, but I expect she'll want to sort one thing at a time, otherwise it'll muddy the waters and we won't know what's effective (or ineffective) for what!

Thanks again Peekay. I hope you're getting on alright? Do take good care of yourself,

Mari xx

[Sue New]

Hi Guys,

Sorry for not posting for a while, I have not been feeling too great lately but I have still been reading some of the posts on the board.

Thanks Peekay for you info re Gabapentin, Topiramite and Pregablin. I think that the Dr I saw at Stanmore mentione Pregablin as another alternative they might consider for me.

I am having some trouble with my medications at the moment. I am currently taking Venlafaxine, Tramadol, Diclofenac (with Rabeparazole to combat the gastro side effects), my HRT (Zumenon), Calcium Supplements (Calcichew) and also Paracetamnol to top things up if they get really bad. I think that amounts to 22 tablets a day if I took all of them. My uro gynae also wants me to take something called Duloxetine for my bladder problems, but as this falls into the same category as the Venlafaxine, I cannot take both at the same time and would have to have a 2 week break in between stopping one and starting the other. The trouble is i have such severe withdrawal effects if I am only a couple of hours lated from taking the Venlafaxine that I don't think I could copew with the withdrawal sympstoms on top of recovering from my last knee operation.

My Pain Management Team were having a case conference about my situation yesterday to try to work out what to do for the best at the moment. With all that was going on I completely forgot to mention that Stanmore were considering me trying the Gabapentin. It's all a bit too much to get my head around at the moment, particularly based on the fact that if I can't take the Duloxetine, the only other alternative according to my Uro-Gynae is a Bladder Sling operation (that will be my 13th operation in the last 10 years).

Anyway, sorry to have a whinge. Mari, let us know what the Pain Nurse says when you speak to her later on.

Take care all,

Sue.

[Mari]

Hello Sue,
How lovely to hear from you. How does your knee feel? And the rash? Are you still in alot of (extra) pain?
Are your pain management team going to supervise you coming off those tablets, do you think? At the moment I'm decreasing the Oxycontin and increasing the gabapentin, so the pain nurse is ringing me regularly to ask about withdrawal symptoms and side effects. Could they lower the dose of the venlafaxine gradually, rather than miss a tablet out straight away? It sounds very complicated Sue. By the way, any news about a date for Stanmore, or are they still thinking about Bath? (Sorry if you've already explained this, my mind's on other things lately. )

Well, I spoke to my pain nurse earlier. We didn't get on to pain relief for the other pains - I sort of think 'one thing at a time' . I'm increasing the dose of Gabapentin now, so we'll see how that goes. Here's hoping... I felt quite despondent for a while yesterday. Daft really, because I've been without pain killers all this time (not by choice), but I'm really hoping that, with the pain nurse's help, I'll find something that will help me to lead a nearer-to-normal life, along with other pain management strategies, etc.

Mari