This is more like a question for anyone interested in sharing. I've read so many different things on causes, age groups, etc... My experience with some Doctor's has been that they agree you have facial neuropathy of some kind but since they can't pin point the cause they are reluctant to call it T.N. Then I've walked in, sat down, described my pain and how it first started, and had a primary care Doctor say, that sounds like Trig. N. Then the referral to the N. who is not so sure but treats you with the medications used for T.N. I wonder if the cause could be pinned down if it would make any difference in anything?... Next blog for me will be to describe what my experience, i.e. symptoms started out like. And, I'm supposed to get injections of migraine/botox in a couple of weeks. If I can go through with it. I'll let you know how that went. I'm rather terrified, having read the side effects. I'm a side effect person. Live, Love, Laugh. Debbie D.
Debbie, I've had the same experience with the Doctors and Neurologists over and over again. Then after the MRI's and no tumor they act like they are broken hearted they can't do surgery! Still trying to get the necessary help, but at least I found the meds that are helping pretty well for now. Best of luck with the injections if you go through with it. Keep us all posted!
Best of luck,
Jack
I’ve copy pasted this from my notes…found this on a website months ago…
Unfortunately the medical community isn’t always up to date on TN, luckily awareness is spreading, and research is being done…slowly but surely.
Below is a list of known and suspected causes:
A blood vessel presses against the root of the trigeminal nerve.
Multiple sclerosis - due to demyelinization of the nerve. Trigeminal neuralgia typically appears in the advanced stages of multiple sclerosis.
A tumor presses against the trigeminal nerve. This is a rare cause.
Physical damage to the nerve - this may be the result of injury, a dental or surgical procedure, or infection.
Family history (genes, inherited) - 4.1% of patients with unilateral trigeminal neuralgia (affects just one side of the face) and 17% of those with bilateral trigeminal neuralgia (affects both sides of the face) have close relatives with the disorder. Compared to a 1 in 15,000 risk in the general population, 4.1% and 17% indicate that inheritance is probably a factor.
POSTHERPETIC NEURALGIA
When chickenpox is contracted during childhood, the virus that causes it, herpes zoster, can remain dormant for decades in the nerve bundles near the spine. The virus will sometimes reactivate, causing the condition known as postherpetic neuralgia, or more commonly, shingles.
In cases of postherpetic neuralgia, the reactivated virus travels around the affected nerve, causing pain. The herpes virus can affect the trigeminal nerve, resulting in postherpetic neuralgia, or pain, in the facial areas supplied by the trigeminal nerve.
Definition of AD
http://www.fpa-support.org/2011/01/anesthesia-dolorosa/
Thank for the info Mimi!