Trigeminal Neuralgia Support Group

Hi LadyIris

Awww, I totally understand the pain you are describing. It's pure hell... can't escape it! My TN is atypical also and affects my right side. I do have remission periods so there is hope. Have you looked into Alpha Lipoic Acid supplement? Some of us on here have found it has helped a lot. There have been studies showing that it helps with neuralgia of the face and also the general health of nerves within the body. Dosage is usually 500-600 mg per day.

I take Tegretol (Carbamazepine) to control my TN, but I do wean off it once I have gotten it under control so that during remission time I am not on it as over time the effectiveness of the drug is diminished meaning that I would have to increase the dose.

Do you find you are clenching your jaw muscles due to the pain? For me, I found that was like a side effect of dealing with the pain and actually brought its own pain with it! I have found that gentle heat (some people actually find ice cold helps them) helps me (so I like to use a Cherry Stone Pillow against my face and neck (relaxes the muscles) and to listen to guided meditations or relaxing music. Also, trying to take my mind off the pain via distraction can help, but if it is really bad pretty much nothing distracts me!

Vicky

Thanx for the validation Vicky. :-)

Never heard of Cherry Stone Pillow. Gonna have to look that up. I love my heating pads! I use one at work as well as home. I agree with you on listening to relaxing music. I do that on my break during work.

Alpha Lipoic Acid supplement, don't know of, gonna have to check that out as well.

The cherry stone pillow is like a heating pad - it is made of fabric and filled with cherry stones (a by-product of some industry... can't remember which) and you sprinkle a little water on it, shove it in the microwave and it comes out warm, slightly steamy and smelling of cherries... MMMMM!!!!

Definitely look up the ALA supplement. It is worth a try I think and after 3-6 months if it is not helping at all, you can always give up. One thing I noticed that I like about it, is that it does not seem to irritate me at all as I have a very sensitive stomach.

Let me know how you get on.

Atypical (not typical or usual) TN.
Aching, burning pain which tends to be continuous, mainly in the cheek, upper jaw and sometimes lower jaw. It is less likely to happe in the eye and foehead area. Spasms of sharp, stabbing pain. A trigger point is more difficicult to define than in typical TN.
Other features as in classi TN.
Sometimes, after a long period, classic TN can become more like atypical TN. It may represent progression of the condition.

Yes I have the Atypical TN Can relate to everything you say

Hello, I haven't posted much on this site, but I check in every so often. I found your post very similar to my experience with TN. I was diagnosed about 5 five months ago. When I researched this diagnosis, I was so scared as to what I had to look forward to. I could not see myself living my life dependent on some concoction of medication and it does not appear that this will ever go away. I opted to go straight for the MVD procedure which I have scheduled for the 1st of December. I will have periods (maybe two days or almost a week) where I will have practically no pain and I can talk and eat. This has seemed to be the case for the last two months. At these moments, I feel like I don't need the surgery or medication, but then the majority of the time when I do have the pain, I know I don't want to live my life in that condition. The surgeon has advised me that even though I have this scheduled, I can always cancel or delay, this is my choice.

Atypical TN is on both sides. I recently developed it on my left side due to the removal of a brain tumor. I also have a tumor on the left, but it can not be removed. The tumor is sitting on the nerve...Lucky me! I was told that the Gamma Knife has caused severe nerve damage and that if I try the DVM it could get worse... I don't see how that could happen. I have been in pain everyday for 25 months with no break. I'm praying for the day when I can have a good day!

I must correct myself...I was told that I have ATN because of the headaches, which have been non-stop for over 2 years... not because it is on both sides. Sorry. :)