Re: The trigeminal nerve

[Guest guest]

Anne,

So sorry to hear about the pain. I just had a bout of it last weekend

and I do have the Bell's Palsy with it too. Hope you have enjoyed

having your sister there to cook hot meals. Do you have a crock pot so

you can just throw stuff in it? I got one last year for Christmas and

make lots of stuff in it. That way, we can hot meals about every other

day.

Terri G.

>

> Hello everyone, I have trigeminal neuralgia. It starts in my ear or

jaw, and feels as if I am being stabbed by a hot sharp knife. The pain

is always on my the right side of my face. when the pain is full blown

my face or i should say my eyelid droops, my mouth opens from the pain I

can not talk I drool. This has lasted hours at a time and I have to just

wait it out. This pain can be set off by a breeze from an overhead fan.

Other than washing my face and brushing my teeth (which can also set it

off) I do not touch my face (right-side) for any reason and my docs know

not to touch. I am not trying scare anyone but this is how tri-gem

affects me! When i see my neurologist on Monday we are going to decide

if I should be medicated for this or not. Anyway I been so sick the last

couple of weeks just home from the hospital with home care but it does

not seem to be enough help? So I am being evaluated next week for

admission to a rehab center (n Joy) in

> wheaton Illinois. At least being away for awhile and not be in the

hospital it will give my husband a long needed break from my care giving

and household chores, although the chores will be there. I am rambling

sorry for that. My sister has been staying with us this week (came in

from Minneapolis) She has been cooking non-stop and freezing meals for

us! Yeah no fast food for awhile. I Hope everyone has a comfortable week

end! Your sarc friend Anne

>

[Guest guest]

Hi,I haven't posted before but was intrigued when this topic came up..I was diagnosed with Trigeminal Neuralgia back in 1996 - I was then diagnosed with MS. Now I have been given the diagnosis of Neuro-Sarc on top of the MS. I thought it was one or the other but my neuro says both. Anyway the point - I had been treated for many years to no avail-tried Tegratol and Neurontin on top of may other things - had nerve blocks done - nothing worked. In 2005 I had a surgery called Gamma Knife in Oklahoma City - the neurosurgeon that did it was Dr. Francel - it was an outpatient surgery done with lasers and they go in and damage the Trigeminal Nerve at the base of the brain. It has been a life saver, I still get some residual pain now and then but take Lamical for it. When I have sarcoid flares I deal a little more with

the TN pain but I can function through it now because unfortunately pain killers such as opiods don't work on nerve pain. Just a peice of information and a possible solution to what I know can be debilitating pain. Take Care Everyone...Devrin

[Guest guest]

Devrin,

I'm glad you posted. Sadly, we can end up with more than one autoimmune disease-- but that double whammy of MS and NS has to be so nasty. Did they find the protein bands in your spinal fluid that designate the MS?

I know many of our members have been dx with MS only to find years later that it was the sarc monster all along.

A girlfriend of mine was dx with Trigeminal neuralgia--- and they finally - after years of pain meds, dental work, root canals--etc, managed to get a dentist that found the right tooth that had not shown any sign of disease-- and pulled it, and her TN was gone.

I know you'll get some questions about the gamma knife stuff. Any help those who deal with TN need all the help you can get.

Sincerely,

Tracie

NS Co-owner/moderator

Re: The trigeminal nerve

Hi,I haven't posted before but was intrigued when this topic came up..I was diagnosed with Trigeminal Neuralgia back in 1996 - I was then diagnosed with MS. Now I have been given the diagnosis of Neuro-Sarc on top of the MS. I thought it was one or the other but my neuro says both. Anyway the point - I had been treated for many years to no avail-tried Tegratol and Neurontin on top of may other things - had nerve blocks done - nothing worked. In 2005 I had a surgery called Gamma Knife in Oklahoma City - the neurosurgeon that did it was Dr. Francel - it was an outpatient surgery done with lasers and they go in and damage the Trigeminal Nerve at the base of the brain. It has been a life saver, I still get some residual pain now and then but take Lamical for it. When I have sarcoid flares I deal a little more with the TN pain but I can function through it now because unfortunately pain killers

such as opiods don't work on nerve pain. Just a peice of information and a possible solution to what I know can be debilitating pain. Take Care Everyone...Devrin