Hello all
Im new to this ive had neuralgia for about two years and have just been diagnosed with MS (yipee)
My neuralgia has got worse but all the doctors will do is pills (co-codamil & tegratol) which make me sleepy depressed & im still sore. Do any of my fellow sufferers have any remedies that work and whats a MS nurse
Hi Christopher,
The drugs for TN are all drowsey inducers – or at least for me. I’m not sure that co- codomol will no much for neuropathic pain.
It took a long time for me to find a dosage that worked. I got a lot of help from the pain clinic. You could ask your GP for a referral. Much experimenting with mixtures of Tegretol, amytripteline and gabapentin. until I got a combination that worked and all was well for about 8 years until it kicked off again.
The neuro referred me to a neuro sugeon who did a procedure which deadened the TN nerve. It was partly successful in that I was able to substantially reduce medication. I think it depends where you live which procedure you are offered. There are a number. A good place to find out more is www.tna.org.uk
An MS nurse is a specialist who works with the neurologist, that is who will assign you one. Again it is a postcode lottery as not all areas have them.
Jane
Hi Christopher
I had TN it was like an electric shock straight up my top front teeth into my nose, it was unbearable. I was given Gabapentin and Amitryptoline. I had to increase the dose until the pain stopped ( I also had nerve pain in my arms and leg). It did the trick I’m on the highest dose of Gabapentin but it’s worth it to get rid of the TN and I’ve had no side effects. Hope you get sorted soon.
Lynne xx
Being a major sufferer of TN I sympathise… The drugs I am on are carbomezapine and another one… I cannot remember the name… My wife deals with my medication as left to me… I would not bother… I also have oramorph for when the drugs do not work… It tastes like dog sick… but 50% of the time does the job for 8 hours or so… The other 50% makes me to physically ill to even think about… and to embarrassed to ‘speak’ about to an ‘audience’…
There is also a tri-neuralgia website… Personally I gained nothing from this but you may do…
Sometimes I think when you have something like MS you must ‘shout’ or you get nothing… It is an absolute joke that anyone with MS does not have a specialist nurse… but I suppose that is down to the worst govt we have possibly ever seen since… well… the last Tory govt…
I would love to say it gets better… but as I am honest… I cannot…
Good luck in your future battles…
Hey im not alone !!!
I think my next step is back to my GP and demand action - if im not going to fight who is?
I think the pain clinic is for me i remember getting steriods which made me pain free for several months. i’ll see if thats on offer again. Thanks guys you’ve cheered me no end
Hey im not alone !!!
I think my next step is back to my GP and demand action - if im not going to fight who is?
I think the pain clinic is for me i remember getting steriods which made me pain free for several months. i’ll see if thats on offer again. Thanks guys you’ve cheered me no end
Hi. I had neuralgia a long time ago and was prescribed Gabbapentin. It got rid of it almost immediately and I haven’t had it since.
Hi Christopher
As another sufferer of TN you have my full sympathy-it’s an awful condition and I hope you find what works for you. I’m on gabapentin which setled it down in a matter of days. I’ve been taking it ever since and apart from a hiccup last year when I had to increase my dose I’ve not had any further problems. I always feel it’s lurking in the background though but as long as it stays there I can live with that.Good luck!!
The neuro referred me to a neuro sugeon who did a procedure which deadened the TN nerve. It was partly successful in that I was able to substantially reduce medication. I think it depends where you live which procedure you are offered. There are a number. A good place to find out more is www.tna.org.uk
Hi Jane
What a useful website. Thanks.
Wendy x
Hi Christopher and welcome,
Sorry to hear of your MS diagnosis and really sorry to hear you get Trigeminal Neuralgia.
I am on a combination of tegretol and gabapentin for it, which does help to keep it at bay. When it flares up I use Zostrix cream 0.75% that I rub on the affected area 4 times a day, which is incredibly effective and can be bought over the counter at the chemist.
http://www.question.com/drugs/zostrixhp.html
As the others have mentioned a pain clinic can be a god send in helping get the right combinations of meds sorted out for you. I was going totally mental with pain (not just TN although that was included) and the Pain Team were brilliant.
An MS Nurse is usually attached to your MS Clinic or neuro’s practice or geographical area. You should have been assigned one when diagnosed and given their phone number. They are there for general support, to answer questions about symptoms, medications and anything MS related, to assist with injections, to act as a conduit between you and your neuro… OK I am describing Utopia but that is what they are supposed to do and some really do it 
If you haven’t been given the contact details of an MS Nurse I would ring your Neuro’s rooms and ask for them for the details.
Hope you hang around and keep visiting these Boards,
Cheers,
Belinda
Thanks for the link, Jane. Brilliant…
Belinda xx