hello to all- this is my first time on any chat site, I am hear out of desperation with trigeminal neuralgia for probably the eight time in my life. I also inherited a condition called HHT- Osler weber randu where blood vessels are malformed and cause bleeding where ever. This morning I was trying to quiet the trigeminal in my face when I was having a nose bleed. I am sick of it all. Other than that my life is in the happiest place it has ever been. So I am blessed. I am starting to have to take the whole tegratol pill. 200 milligrams and drinking lots of coffee to reduce the fuzzys. I am afraid to do any of the surgery I have researched. I can't find the spell check so I am sending this. Hi again.

Hi . Welcome to NT and online support .

There is a TN forum here:

http://neurotalk.psychcentral.com/forum26.html

How long have you been on Tegretol? I had been on it for a while (100 MGs), yet, for me, my neurologist and I discovered that Relpax helped more. At the time that my doc prescribed it, I only found one other person whose doctor had Rx'd it for off-label use - for TN.

I'm not familiar with HHT, though my mother had Von Willebrand's Disease (VWD).

Peaceful - that is a great name...
Welcome dear - To the Neurotalk Forums!

Peaceful,

Welcome. You have found a warm and caring home.



I am sorry for your ills. God Bless and Peace

Hi there:

I would bet that there isn't a person on the face of this earth who knows exactly the kind of pain you are going through. I once saw a special show on the Discovery Channel. Very hard stuff to deal with. You are a very brave person. I certainly hope the pain meds kick in for you.

I was just reading up on this subject (they used to call it tic doulereaux) or something like that. I also saw a tv show many years ago (Medical Center) and the actress had a case of this. She could not touch her lip because she would have pain beyond belief. In the show, (and I have no idea if this is done in real life, but remember this show was broadcast over 30 years ago), they implanted a receiver in her body, and then the doctor switched on a device and somehow, it short circuited the trigeminal nerve. And all was well. How marvelous for television. And how un-marvelous that they haven't figured out a way to do this in real life. Or maybe they have??

I, myself, got a little taste of your pain, when I had Bells Palsy 13 years ago, and I will never forget it.

It was on Psalm Sunday. I thought I had a stroke, went to the emergency room, and was told "No, you have Bells Palsy". Because I'm diabetic. My sugar was bad way back in those days.

I will never forget what I went through for 2 weeks with the pain on the left side of my face. I went to my doctor and he said 'your trigeminal nerve is all inflamed". I had no idea what the heck he was talking about but I remember taking strong pain meds and keeping warm compresses on it. I was up till 3 a.m. with all that pain.

I really commend you. You are in a tough situation, yet you can find the compassion to come on a message board and reach out.

I hope that someday, they really do find a way to block the pain of trigeminal neuralgia.

Sincerely,

Melody

Hi
Welcome to neurotalk, if you need anything just ask
Many thanks and I am sorry about what you are going through

Peaceful,

Hello and welcome to NeuroTalk. Great to see you have come to be with us.

As Tena said that is a wonderful name.

Looking forward to seeing you around.

Darlene

Hi, Peaceful! Welcome to NeuroTalk!

I see that Bobbi has offered you a link to the PD forum, so feel free to join in anywhere, and let us know if we can assist you in any way.