Forum

Carbamazapine/ Tegretol

Hi All, I’m after a bit of help and advise!!! I’ve just finished taking carbamazapine up to highest dose and it has worked for a few years on the neuro pain and llhemerts to a certain extent but no more… Eaton has now put me on nortriptaline again as I’ve tried amyitriptaline for my back through my neurosurgeon at Walton ( anybody notice department’s don’t speak to each other!!!) anyway upto 30mg on the nortriptaline but can honestly say it’s not doing a thing… I am still working and am a surveyor so live my life driving ( I know it doesn’t help!!!) my nuero at Walton isn’t the nicest and I know I need to start helping myself maybe thinking about work change for a start… Diagnosed with ppms 5 years ago and I’m still working so I know I can’t complain. But the pain, lack of sleep and losing my independence is a huge thing… I’ve always done for me… Anyway I digress does anybody know of anything else I can take… Sorry for long post but you guys tell me more than my neuro… Thank you x

Hello Katty

There are other drugs for neuropathic pain, have you tried Pregabalin? Or even Gabapentin?

Personally I tried Amitriptyline about 10 years ago and didn’t like the side effects (ie morning after ‘hangover’ type). So I began taking Nortriptyline, which didn’t help at all. My rehab neurologist (who is ace at sorting out medications), said Nortriptyline wouldn’t help and to re-try Amitriptyline but to take it differently. He said take it by 7 or 8pm at the latest, that way it works overnight and helps with your sleep but it’s effects have gone by morning.

That worked and I’ve now been on Amitriptyline for about 8 years. It works, and now I can even tolerate it during the day. But until your body is really used to it, keep it for early evenings.

Is your GP any good at prescribing neuropathic pain meds? Some are and others won’t even start you on a different drug! If they are able to try out different drugs, see them and ask for help.

Otherwise, it’s back to your neurologist for a change of pain drugs!!

Sue

Hi Sue Thank you… On nortriptaline at the minute but not getting anything from it. Because I drive well live in my car for work( which I know doesn’t help matters) I have to watch what I take as you all well know… I took amiytrptaline for my ruptured disc but just sat in a daze all day which isn’t good when you’re sat at traffic lights and can’t remember what to do??? Or why you’re there!!! My GPS say I’m to specialist for them and my neuro is a nightmare… Sorry for the rant and I know we are all in the same boat(MS gotta love it…) Done the gabapentin and pregabalin again my own little world… I don’t want to give up work as that’s my independence but my speech and tremors are starting to play out a lot and when stood in front of new clients trying to remember the next word to say its getting awkward… I used to be a very strong independent woman now I feel like a useless mess… Again sorry for rant and moan and thank you for taking the time to help… Means a lot same for Charlie B xx Kathy xx

It’s an absolute bugger when you’re suffering pain and can’t find the right drug to deal with it.

I’m sorry I can’t help. I really hope someone else can come up with something that will deal with the pain but not zombify you.

Sue