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How many have TN?

Hi, feeling a little fed up and crazy here. I have had terrible pain due to neuralgia (along my cheekbone and nose) and have been waiting since before August to be seen by the pain clinic. The neurologist has tried all the pain medications he can think of and I am still having really bad attacks. At the moment I am on Carbemazapine and Amitriptyline as well as codeine and nurofen all day every day to top it all I have had a reaction to something and have an angry, itchy red rash all over but no one seems concerned about this? I phoned my MS Nurse over two weeks ago and I still haven’t heard back from her (not unusual I’m afraid to say as I have NEVER been able to get hold of her) Has anyone else had all this? I would probably feel a bit better knowing others have had the same problems and know I am not being discarded aside.

You have my sympathy. I’ve had 4 attacks of TN, each lasting 45 mins and, as chub says, it’s horrendous. There are no words to describe it to anyone who has never had the pleasure.

I wasn’t able to get any answers as to how to help the pain, which pprobably isn’t what you want to hear. Thankfully I have managed to get the sympton that, in my case, was triggering the TN under control. I live in fear that it might come back though.

Keep pushing for answers though and if you get one, please let us know.

Good luck. I hope you get it under control quickly.

I am a long time TN sufferer so I sympathise totally with how you feel

eventually I was taking so much medication that my consultant referred me to a neuro surgeon and I had a procedure to deaden the trigeminal nerve. It isn’t a permanent solution and the damn pain could come back so I keep my fingers crossed

I found this website - www.tna.org.uk very helpful

Jane

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Hi, you have my sympathy as a fellow suffer I understand the horrendous pain you are in. The only medication that helps me is morphine. I have tried codeine and gabentin and they do not touch it. I am lucky my gp understands just how terrible the pain can get. I hope you get an appointment soon with the pain clinic.

ann

Thank you each and every one of you that replied! I have still not heard from the pain clinic or my MS Nurse. I have pain most of the time but have bad attacks of TN usually twice a day but can be as often as 4 or 5 times a day - this has been going on for about 5-6 months. I am like a zombie who feels like I am drunk nearly all of the time and I have NO life outside the house and haven’t had for months. All I seem to do is sleep, take tablets and drive myself insane with the pain. Does anyone ever listen? I feel like I am just being dismissed as a number and my number hasn’t come up yet. Another two things are my neurologist mentioned putting me on a different drug instead of Rebif (this was in August) and he hasn’t done anything about it. I know my MS Nurse wants me to stay on Rebif which I have been on since January - she is so adament about it I’m not sure if she gets some kind of commission and to be honest it hasn’t done anything for me. This time last year I was still working full time and 2-3 weeks after starting Rebif things started to go downhill and have just got worse. My last MRI showed new lesions too. The second thing is they picked up some kind of tumour on my pituitary gland at my first MRI and it has got bigger so the endocrinologist has now referred me to Sheffield and they are going to decide whether to remove it or monitor it. I have had so much correspondence from the endocrinology dept. but am struggling even to speak to someone about my MS which is a long term disease. I just don’t know where to turn now. Sorry for sounding off like this but you guys are the ones who understand all this. My other half has been great through all this and I feel so guilty that he has given up his life as well and he is so worried about me.

hiya

i begged my dentist to take 2 teeth out because of the pain. he was reluctant (understandably!) but the pain was unbearable (and i have had 4 kids!)

since they were removed then no pain at all.it is drastic and but i dont regret my decision at all.

guilt-erase the word from ur vocabulary! i assume that ur hubby chooses which socks to wear? he also chooses to be with you-accept and enjoy your time together.

a short answer-please dont think i am blunt-am struggling to focus!

ellie

I’m answering again because I remember all too well the early days of having TN. It was my GP who was the most help because I got fed up of waiting eons between consultant appointments. TBH I rather took charge of my own medication and kept upping the dosage until I got some relief. My TN was not constant (thank god) but seemed to always happen at bed time. I think you have to be a bit of a squeaky wheel ( you know, the one that gets oiled) and keep nagging until somebody does something, even if it’s only to listen.

It’s only my opinion but I’m not sure that codine and neurophen do anything for neuropathic pain but they will be contributing to your tiredness and zombification. What dosage of tegretol are you on? I was taking 600mg twice a day of the retard version. It was when this stopped working that I was referred for surgery

jane

To be honest I think the codeine has got a lot to do with me feeling like a zombie but I’ve taken it just because it gives me an hour relief - it’s a rest from the pain. I’m on 300mg tegretol (carbamazapine) and 20mg Amitriptylene (soon to be 30mg) at night. I was on 600mg tegretol but because I didn’t know if I was coming or going the neurologist told me to cut it to 300mg at night with the Amitriptylene then at least I would get a stretch of sleep in instead of an hour here and there. I have nothing else I can take during the day so I depend on what little relief the codeine and nurofen give. The Neurologist said there is no other medication he knows of so it’s up to the pain clinic…when I get in to see them! I’ve been on amantadine, pregabalin and gabapentin too but nothing has helped. I will try phone them again next week but I’m not holding out much hope. When I rang them at the beginning of the month they were only working on the May referrals. I know my neurologist wrote again to them and asked for an urgent referral but as yet there’s been no word. Oh well - watch this space lol with a bit of luck I’ll have some news before Christmas.