Trigeminal neuralgia

suenewberry81

Been told I have Trigeminal neuralgia doctor has put me on medication which is making me feel sick and drunk, anyone else got this Trigeminal neuralgia if so how do you cope??

I really miss the gym :-( I want to eat normal but feel sick, feeling sleepy
Been signed off work for this week but someone see me at the gym on Sunday because I thought I was better and grassed me up now work wants me in the office when I go back :-(

I was sent home last week, the weekend I thought I was better planned on going back on Monday etc.... Didn't know I was going become really poorly again :-((( all sucks right now xx

mebutslimmer

Hi Sue.
I've been diagnosed with TN this year too. I thought it was my teeth, saw a dentist, had a tooth removed (!) but still had pain. Saw more dentists, had more unnecessary treatments before having a lightbulb moment. As I walked out from having a filling replaced 'in case it helps' I was numb from the anaesthetic, but still in agony.

I went to the GP and he agreed it could be TN. I was put on carbamazapine, which made me feel sick and drowsy. I thought I was ready to go back to work., then they changed my dose and it made things much worse and I was off sick again.

I also developed a twitch, which made the dr agree to take me off the carb and try me on gabapentin instead. I'm much happier on it.

I'm not sick, dizzy or tired.

I've put on a bit of weight, but that's because I've been off work for 3 months. And for much of the first month I spent a lot of it in bed as I was in such pain.

I'm back to work on Monday and plan to get back to eating properly and going to my zumba class / going for walks for my exercise. I'm looking forward to gaining a bit more control.

I've had a referral for a neurologist, seen them (they agreed with the TN diagnosis), they sent me for an MRI, my results show an artery pressing on the nerve which should account for the cause of my pain. But it also shows other things that they aren't sure about and I need to go back for a lumbar puncture and other tests.

Slightly freaked out by it all, but hey ho. Such is life!

The key is definitely getting put on the right medication for you.

RobbieKCPhT

I was dx with TN in Oct 2006. On every kind of med possible and no on Trileptal, which has been helping for the past several months. I've never had surgery, because my dr's said they didn't see a compression on my MRA. Anyway, feel free to friend me, and good luck!

Tishrei

Just lost my post so retyping...
I was diagnosed with occipital neuralgia years ago so I know the pain. I really feel for you!
I was very lucky, I worked with a naturopath and a Chiro and managed to get rid of it. The ON comes back whenever I get a viral infection but it rarely lasts more than a couple of weeks at a time. The pain is so bad that I can't do anything but breathe through it and lots of meditation. Upside is that when its here, I'm in so much pain I literally cannot eat. So I lose a bit of weight
It's pretty miserable. When I first got it I seriously considered ending my life. Didn't want to go through life doped up on meds and couldn't cope with the pain.
I recently thought I was experiencing TN but it turned out to be a cracked wisdom tooth. My dentist said he never saw anyone so happy to have a cracked tooth!

HippySkoppy

Firstly, hats off to everyone here living/enduring TM, the pain is wickedly cruel.

I have TM brought on by inflammatory vasculitis a by product of Lupus, I also have a narrowed entrance/area in the base of my skull where the nerve has to pass through and this contributes as well but it is not able to be surgically helped.

I too have tried multiple meds to try to control the symptoms but they were not helpful and the side effects made life even more difficult. For me the trick has been controlling the Lupus symptoms and reducing flare ups - this seems to settle much of the TM. Physio and massage didn't change anything in any meaningful way, in fact it often caused the TM to flare up. Everyone is very different and what may help one will make things worse for another.

The things that I have found helpful have been the use of cold packs and trying to remain quite cool by 'normal' standards....it seems the hotter I get (I realize this is hard to control always when there is an inflammatory disease process going on) the worse the TM.

That's all I can offer, except once again, my respect, sympathy and empathy to those suffering and I hope you all get the answers and help that you seek.