Hi,
I was diagnosed with TN about a month ago, although in retrospect I have had it for a long time. I have already failed trileptal and am now on tegretol and feel terrible, so very tired and the pain gets worse every day. I know many of you have suffered for years. How do you bear it? I am now out of work because of the meds. I am considering surgery as I cannot live like this. I am not coping well.

Lisa Ann

dear Lisa Ann,
I am not great with PD -parkinsons disease, I am not exactly for certain what
you have so I googled diagnosed with TN

Trigeminal neuralgia (TN), also called tic douloureux, is a chronic pain condition that affects the trigeminal or 5th cranial nerve, one of the largest nerves in the head. The disorder causes extreme, sporadic, sudden burning or shock-like face pain that lasts anywhere from a few seconds to as long as 2 minutes per episode. The intensity of pain can be physically and mentally incapacitating.

The trigeminal nerve is one of 12 pairs of cranial nerves that originate at the base of the brain. The nerve has three branches that conduct sensations from the upper, middle, and lower portions of the face, as well as the oral cavity, to the brain. The ophthalmic, or upper, branch supplies sensation to most of the scalp, forehead, and front of the head. The maxillary, or middle, branch passes through the cheek, upper jaw, top lip, teeth and gums, and to the side of the nose. The nerve’s mandibular, or lower, branch passes through the lower jaw, teeth, gums, and bottom lip. More than one nerve branch can be affected by the disorder.

I having had 15 years of pain - I am very sorry anyone goes through such a
world - I try to live one day at a time - and some days are very long -
light and luv to you~

We do have a specific trigeminal neuralgia forum, with a lot of long-term sufferers who have great knowledge and empathy:

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

Hi Lisa Ann,

I see ou have met some of our great members already.

I am sorry to hear about your pain. I do not know much about TN but there are some very informed posters in the TN forum.

I hope you get some relief soon.

so sorry for the reason that brought you here. Hope you find some answers and support at the TN forum.

I'm again having flares of TN after few years remission. I'm still seeking something that help it and the other neuro problems & pain I have esp. those that generat head pain.

I'll be getting Botox first time next week-- not specified for TN but another DX. don't know if Botox is covered by insurance for TN ( short list of DX but some do get for other condtions by appealing (migraines for example) others are denied.

the reason I'm mentioning Botox is my friend; who suffers w/ TN (and also other neuro problems & intractable chronic pain --says TN is THE WORST pain known) He's tried so many things, meds, etc.
He was in a Trial & got Botox; enjoyed several months of no TN pain. Praises relief it provided.

Perhaps others will have more suggestions & advice...

hope you find relief from this horrible pain

Welcome*)!*)!

Just a caution- Make sure you were given a Western Blot for Lyme disease because it can cause TN and be reversible/treatable. Make sure you have the bands from the test not just a CDC positive or negative because some bands are species specific (like 39 kda), thus just one band can mean a true positive even if surveillance criteria (CDC positive crtieria is not designed for diagnosis but for surveillance & reporting purposes, for example average man has 6 bands, average woman has 4, CDC positive is 5! but if you have 39 kda ALONE it is Lyme.) Anyway, Lyme can also be seronegative because there are so many strains- like Borrelia Bissetti is in CHICAGO & the MidWest & will make you test negative- and the Kettle Forest strain is in Wisconsin & will test negative because the standard test strain is Shelter Island New York!

ANYWAY, WELCOME*)!*)!
WELCOME WELCOME*)!
Best wishes,
Sarah

Lisa,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Again welcome, looking forward to seeing you around.

Darlene

Sara, how do you know so much about lyme's and could you give me a resource? I have had many exposures and live in Central Wisconsin. I have had many deer ticks on me this last summer. I was tested for Lyme's and told I was negative. I also had a pericardial effusion this last summer that no one could explain (fluild around the heart) I wonder if the TN and the effusion are somehow related.