I have been dealing with TN for 6 years or so and it looks like it is going to force me to retire… I have the typical high stress travel executive lifestyle and it is all coming apart.

I have had a MVD/ ryzotomy; witch did great for 3 years. Next a Gama knife about a year ago and no improvement from it so far. I am on just about all of the normal meds. And having to increase my dose monthly or so to stay ahead of the pain. It is getting to the point that driving and reading are difficult unless I plan it around my meds. I go to bed at 8 with the kids and it takes just about all I am worth to drag my but up in the mornings…

Looks like I am just about done I can no longer keep up my performance at work and keep up any semblance of a normal family life. I am just wondering who ells has had to make this decision. One of the things that makes it hard is I am only 37, and pretty much at the top of my game career wise.

My apologies for the ramblings just need to do some venting.

Hi, i also have had to give up work i am only 26! i am a hairdresser, i have bilatereral tn and occiptical neurralgia as well i got tn from a severe case of bell's palsy which i think was wrongly diagnosed they couldn't determine if it was ramsays hunt syndrome. i therefore cant have surgery or botox to help my pain as it could cause paralysis again! i have tried pretty much all of the recommended meds and haven't been getting alot of relief i also have accupuncture which helps a bit! i feel pretty silly only being 26 and having so many health problems we are too young to have this horrible pain! i also suffer from hemi facial spasms and i have hypercausis in my left ear so i cant handle much noise at all!

Feel free to vent thats what we all do here it helps us feel better!
low pain wishes to everyone!
Melina

I'm so sorry to hear about all those painful conditions that you both have. I had one episode of TN several years ago as a result of an MS exacerbation, and I too was left with a Bell's Palsy.

I was lucky enugh for both of them to pass without any lasting problems, and I hope that you too finally get relief from your symptoms.

I've not heard of the condition known as hypercausis before, but I do have overly sensitive hearing which I blame on MS. Any loud noises cause me severe ear pain; even the ads on TV which are always louder than the program that I've been watching, cause me pain.

Good luck to both of you in getting relief from what ever works for you. I look forward to soon reading that your pains have passed.

Hi Koala,
i read the hypercausis in my neuro report so i guess that is what it is called i also have the same problem with the stupid tv ads, i cant handle alot of everyday noises it seems to be the different pitches in the noise that set me off all the time, for example i went to my chiropractor the other day for my accupuncture and they had lovely relaxing music playing until there was a piano playing high pitch notes i couldn't do any thing or even block my ear cos i had pins all on my back, neck and my hands and there was no one in the room i hate being put in those sorts of situations where you feel stuck! i feel sorry for you having bp on top on ms its horrible isn't it! i just cant believe that i was told that i would recover from bp in 3 weeks i was diagnosed on the 29/5/06 it has been 2 years and 3 months since i got it! i have all my facial movement back which i am extremely thankful for! its just the horrible things bp has caused for me! the docs couldn't work out at the time whether i had RHS and not bp i seem to fit all the symptoms of RHS but they never found the coldsore virus in my system! so i will never know now!

low pain wishes to you Koala!

Melina

Ps where in Australia are you again i have forgotten! i am in Adelaide!

We're in Tasmania now Melina having moved "home" from NSW last Christmas.

I have just recently had a new doctor diagnose me with TN. Why is it so difficult for the med community to put two and two together? I have struggled with this for years now.

I am very grateful that I finally know - but I am very upset that I had to live in shear pain for so long and have everyone think it was "all in my head..". They were partically correct about that.

I am looking for any information about the connection between being gluten sensetive and TN. Does anyone have suggestions?

I also spoke with my parents and it evidently runs in my family. My great Aunt had this - and back then, they clipped the nerve to her face. My mother said she would sit across the table from her when she ate, to make sure my aunt didn't chew on her check.

I think things have come a long way from that - but I'd like to find out if it's the good we're eatting.

Thanks.