Gabapentin

[nonyanomemory]

Hi Sue, I really empathise of where you are with the medication. I seem to remember a user who doesn't seem to be here these days finding herself in a similar situtuation with medications. She was admitted residentially for six weeks - initially coming off the medication she was taking followed by assessment for her needs. I am not saying that is what you need - I just remember her story. Her eventual medication needs were purpose made for her in one liquid dose prescribed by the pain management specialists - so that she had the least side effects and best relief. I think it is difficult for you right now as you have just had surgery and have the bladder issues to be dealing with. I wonder how you keep so strong. You say this would be 22 tablets a day - if you took them. Sue I think the sooner you attend a pain management course the better. I think Mari has mentioned recently in a post - sometimes lower doses of pain relief regularly taken as part of a multi-disiplinary approach combining all aspects of pain management strategies and taking each strategy as seriously as treatment as prescribed medicines so that the overall plan is that the pain doesn't control you - you control the pain may improve things a little. It seems a shame that you can't take the medication for bladder issues. It is a complex area but Sue if this were me and I were taking so many medications etc i would be inclined to start again from the beginning and that would mean supervised- considered and medical supervision for decreasing the amount of different med's you are taking and then starting again with a much more 'whole picture' plan for what works best and what is in your best interests. I hope you understand this is not in any way a critisim for what is happening now as to a certain extent I think it has happened at you but I wonder if it is time that you - your pain - your medication etc were looked at as a whole - I do so hope one of the planned pain management courses comes through for you very soon. I also think that the different agencies involved in your care need to communicate more effectively with each other - if your pain management team are trying to work out whats best for you it is not good if another party are looking at options or solutions which may not be the same - Are the different bodies privy to the same medical information I wonder. I do not think it should be up to you to remember to tell one team that another team are thinking of a drug regime for you which may not suit what the other team are thinking of and I actually think that unless you are very much on the ball this could lead to considerable problems. Perhaps a visit to your GP may be one way forward to explain what is happening and some possible solution. I do so hope you start feeling better soon Sue and in the meantime my thoughts are with you.

nx

[Sue New]

Thanks Mari & Nonya for your posts.

Nonya, one of the problems I am having at the moment is that I do not have a named GP at my surgery anymore due to major staffing issues. In fact as of March 6th, our local village surgery is only going to be staffed by one GP each morning and at all other times we will have to travel 8 miles to the neighbouring village or ask for a home visit. My named GP is going to be at my local surgery 1 morning a week only, but she is not very proactive about my condition at the best of times and I had pretty much started seeing another GP in the practise who did seem to take some interest in my case. Unfortunately he will not be working out of my local surgery at all in the new system .

I think this is one of the reasons the local pain management team feel it is time to try to sort all this out for me. As you say, it is no good having lots of different teams having an involvement in my case. I am happy that I am still on the books at UCLH and that Dr Hakim is generally monitoring my condition, but from a Pain Management point of view someone needs to decide whether I am best off being dealt with at Stanmore, Bath or at my local hospital. I am due to go back to Stanmore on March 13th but to be honest I am not sure if it is worth going or not as I think all these appointments are just confusing the issue and everyone thinks that someone else is sorting my problems out for me.

At least I am a little further forward as the local orthopod who did my knee op is now arranging the MRI of my upper and lower spine, but despite Dr Hakim writing to my GP and asking for a Barium Swallow to be arranged, notheing has happened yet. I think it is because of the staffing crisis at my surgery. In fact a locum GP who came round for a home visit recently let it slip that the practise "just dosn't know what to do for me first". Gosh, if they don't know, I certainly don't .

Mari, the rash on my knee has gone away now but I am still not able to fully bend or straighten it, which is most odd as my left knee still hyperextends dramatically and I feel all out of balance.

Sorry my reply has turned this subject a bit off topic.

Thanks, as always, for your concern.

Sue.

[nonyanomemory]

Hi Sue, thanks for the reply. A complicated situation indeed! I think it would be a good idea to keep the appointment at Stanmore at least it is quite soon and you may get the opportunity to explain something of the dilemma with regard to organising effective pain management. The Gp situation is obviously difficult - As it has been recommended by Dr Hakim that you have the barium test would it be worthwhile booking a telephone consultation or talking to a 'helpful' receptionist to find out if this referral is to be made and if it hasn't when it will be organised as if the referral isnt made then it is difficult for Dr Hakim to provide continuity of care. With other referrals perhaps writing a list in order of priority for you and making it clear to the practice that despite the fact it is complicated it isnt rocket science and someone has to make a clinical decision and suggest that you can help them if they want with your opinion! Good luck Sue, in the meantime I guess concentrating on recovering as best you can after your recent operation must be another priority. Over time I do so hope you get some light at the end of the tunnel as you are certainly dealing with a lot at the minute. So here's a big bunch of albeit virtual to wish you well.

Take care Nonya

[Blunderwoman]

Hi all

I just wanted to add my twopennorth about Gabapentin. As you probably all know my daughter Hannah has been having a lot of problems with her HMS and our GP decided to try her on Gabapentin as he thought that a lot of her problems were being caused by muscle spasms. He said that at a much higher dose Gabapentin is used to treat epilepsy and that at the very low dose that she is taking it should help to stop the muscle spasms. Well, I only wish that someone had done this sooner!! When I took her last week I had spent the whole of the weekend following physio on her thumb putting one or both of her thumbs back "in". This was day and night and I have to do it as she had no use of either hand due to the dislocations. After taking the Gabapentin I cant say that the dislocations have stopped completely but they are much more manageable. She can still take her usual painkillers for the pain (Co-drydamol are the only ones that seem to help her) and life is more bearable.

I have also been having problems for a while now with depression and stress and when I last visited the doctor he decided to try me on a drug that is related to Gabapentin which is called Tegretol and again, at much higher doses, is used to treat epilepsy. The tablets made me very drowsy to start with but the side effects seem to be wearing off now. I am hoping they will stop the panic attacks I have been having as the silliest things have been starting them off lately. I will report back if they help but that may take a little while.

Take care

Pauline

[Mari]

To update,

I am now on the full dose of Gabapentin and it appears to be working for the nerve pain! I haven't had any nerve pain (occasional,mild nerve compression symptoms, but no nerve pain) for 2 weeks now.

I'm tolerating the side effects very well, too. A bit of a dodgy tummy and drowsiness each time I've upped the dose, then it settles. I have been doing daft things lately, like searching for my splint when I've already put it on my wrist, and making silly mistakes, but I've been under a terrific amount of stress lately (separate to the EDS) so that could be the reason. Time will tell. Meanwhile, at least something has worked for something!

Mari

By the way, Pauline, I'm glad Gabapentin is working well in your family,
Best wishes x

[Sue New]

Hi Mari,

I am so pleased to hear the Gabapentin seems to be working for you .

Take care

Sue.

[nonyanomemory]

Hi Mari, good to hear something is providing nerve pain relief for you. The stress now that simply has to go Take care Nonya

[Mari]

Thanks Sue and Nonya, for your kind wishes .

(Hope you're both feeling better, we all seem to be a bit poorly lately!)

Mari x

[Blunderwoman]

Hi all

I was just reading my previous post about Tegretol and I take back what I said about the side effects wearing off - it feels like I have spent the last two weeks asleep. I have cut the dose down slightly and feel a bit more "with it" today but when I went back to my doctors last week he gave me Venlafaxine to take instead. Luckily I saw the thread about these before I started taking them and investigated them a bit more. I will stick with the Tegretol.

Take care

Pauline

[Mari]

Hello Pauline,
Sorry you're having trouble getting the meds right. Are the Tegretol stopping the panic attacks for you? Hope so,
Mari

[Blunderwoman]

Hi Mari

I am sorry that I havent replied until now but I have felt so unwell lately that I have hardly been online at all. I am not on any depression/stress medication at all at the moment as I have had a bad headache for nearly two weeks now and the Emergency doctor I saw on Saturday advised me to stop. They werent really working anyway, perhaps they needed to be taken for a bit longer to get any benefit.

When we saw Dr Hakim at UCH last week I mentioned that Hannah was taking Gabapentin. He didnt seem to keen on her taking it but I missed the opportunity to ask him why. However he didnt say not to take it and it does help so we will carry on.

Take care

Pauline

[Mari]

Hello Pauline,
Sorry to hear you have been suffering lately . I hope you can find something that will help you, and that things will look up really soon.

Maybe Dr Hakim wasn't keen on Hannah taking Gabapentin because she's so young. I suppose many of us, like Hannah, have searched for pain-killers that will help and reluctantly take something so strong when all else has failed. He may be concerned that the side effects are strong? Perhaps when he talked about pain management he was thinking of teaching Hannah some strategies to help her live with her pain, and decrease her medication. He may have thought that for now it was important to help to alleviate her symptoms and improve them through physio, etc., before thinking about the Gabapentin? I must stress I have no medical background; these are merely the ramblings of a tired mind, so ignore me and I'll shut up now!

All the best,
Mari

[Blunderwoman]

Hi Mari (again!)

Unfortunately when we saw Dr Hakim I wasnt feeling too well and I must admit that a lot of what he said didnt register too well at the time. He will probably cover everything again in his letter to our GP (he has promised me a copy) so I am waiting for that to come and then we will know what will happen and when.

Take care

Pauline

[Blunderwoman]

Hi all

Hannah has been taking Gabapentin for a few weeks now but although we are having fewer problems with her hands it seems as though it is relaxing the wrong muscles too much now. She has been dislocating her hips, knees and ankles a lot over the last few days and when she had an assessment a few months ago I was told that she has to clench all of her leg muscles just to stay upright. I think that the Gabapentin is working too well on those muscles and now they are not supporting her leg joints. She cant use crutches because of her hands either. Hands or legs - what do we do. Will have to go back to GP again.

Take care

Pauline

[Margaret]

I have trouble with my hands - the muscles in my forearms are really tight and get tighter and painful with activity - such as writing, typing, cutting food etc. I have seen loads of doctors, about this, (rheumatologists and neurologist included) and mostly they just look at my HMS and point to that or sensible ones admit they don't know. I figured maybe nerve impingement - but no tingling, no nerve impingement apparently. Nerve testing agreed - they detected no nerve impingement.

Maybe it was something in my muscles that is wrong. Finally I got in to see a neurologist with a muscles specialty, one of the best apparently. She asked all sorts of questions, said she didn't know what was wrong with my hands (no muscle enzyme problems) but that she had seen 2 other people with a similar condition, she had prescribed one of them gabapentin, and he had found that it gave him better endurance, less pain.

Gabapentin is an epilepsy drug apparently, but sometimes is used for other nerve conditions. I've been on it for a few months now, but still on a very low dose. The main side effect is drowsiness which eases eventually but it hits me pretty hard still. I'm still not sure yet if it is helping my hands (they fluctuate so much normally it is hard to tell).

I'm curious if anyone else has ever encountered this drug and if you found that it helped? I have to decide whether to increase the dose again, or to stop I guess.

Thanks,
Margaret