My Story

I'm so glad I found this group! I've suffered with TN for 8 days now; was diagnosed 2 days ago. The thing is it just keeps moving and intensifying and it's reaching a point, a difficult point, that I've never experienced before. And that's saying something!

I want to share my story. (Hope that's ok w/ everyone.) On March 3rd, 1991, I was electrocuted. There's a long story behind the accident, but for this purpose, I'll just say that my Mom had surgery and couldn't use the stairs, so I came home to help. This was in
Warner Robins, GA (near Macon). That area got around 15 inches of rain over a 3-day period. In the furnished basement, my parents' sump pump "died" that Sat. night/Sun. morning, and my father and I worked furiously to keep the water at bay until he could find someone to repair the pump. At about 9:00 am on Sunday, I went to move a small pump my Dad had just purchased to a different location when, apparently, either it arced or my wet clothing came in contact w/ it. I collapsed onto the pump with it directly over my heart. My Mother swears she heard a yell/scream. My Dad, using a WetVac (which is loud) in a different part of the basement, filled it up and came to get me to empty it. He found me "convulsing" with the cycles of electricity. It had been 12-15 minutes since Mom heard the yell. Dad did CPR, EMT's were called and arrived in about 10 minutes and took over CPR. And I woke up. I don't remember any of this, from the actual electrocution until a couple of days later.

I write all of this because I developed severe head pain about 2 weeks later. I don't call them "headaches" because there's no "ache" about them. They are so bad that I had to take LT Disability. Got married exactly 4 years later (well, March 2nd, to a girl I knew in high school). She's amazing! Her patience & understanding with these bouts of head pain (averaging 2 times per month with each lasting from 2 days to 2 weeks), well I'll just say I never thought I'd get married after the accident. But after 12 years, I found a doctor who got an Electrical Engineering degree before his MD. He understood about as much as anyone can about what electricity does to the brain and/or the body. I always compare it to a computer and an electrical surge. My brain reads things differently than others, and it interprets them as causing bad pain

Now this. Trigemenial Neuralgia Syndrom. Talking about bad pain! And it's just starting for me. I just thank God that I've found you, this group, to help guide me through something I've never heard about. And it's already difficult...after 8 days!

(I started out like this was going to be short. Sorry for the length, but I want you to understand what I've already been through so it might help you help me. Thanks for reading.)

Sympathise with yr predicament. What medication you're on now? What does the doctor say? May be I can help.

R C Murthy

R C, I'm on several medications for the head pain and neurological damage from the electrocution, including Lyrica, Xanax, and Fentanyl patches I wear on my skin. This medication "cocktail" has allowed me to endure the pain w/out having to go the ER 2-3 times per month, which is what I required before. As for the TN, I've yet to be treated. I went to an Urgent Care Center and was diagnosed by the doctor there but I'm waiting for an appointment with a Neurologist to begin treatment. I moved from Georgia to North Carolina about 6 months ago and have had trouble w/ my Dr. in Georgia getting a referral to try to find a Doc here in NC. Of course, that was for the head pain. Now, the TN has resulted in a completely different ballgame. I'm scheduled to see a Neuro on Sept. 3rd, but the TN has progressively gotten worse each day and was told that the Urgent Care Dr. wants me to see someone right away. But we all know how slowly the wheels of medicine sometime seem to turn.

Dano, I've homoeopathy in mind for quick relief since your appt. with neurologist is a fortnight away. It has least side-effects. My only concern is how far that medication works along with conventional medication U take for other problems. But that doctor alone can clarify the point.

If U are looking for quick relief, you may try my homoeopath here. U can reach him by email and speak to him on telephone. I can provide those details and I'll speak to him. U can get the medication there or he will courier it to you. This consultation will not cost much compared to the US healthcare costs. Once yr TN pain is controlled, you can decide on further course of action.

If U decide to access my homoeopath, do let me know. I'll do the needful. Containing the pain is priority. Tks.

Wow, you have really been through the ringer! Hugs and prayers.

Haven't posted in a while so I thought I'd pass along my situation in case in might help someone else. As I stated earlier, I went to the ER. I was prescribed Tegretol XR for the TN. Having been on so many meds over 22 yrs due to electrocution, I didn't give it a second thought. Quite shameful for someone who's been a pharmaceutical sales rep! Apparently, I am hypersensitive to Tegretol. I knew things weren't right but chalked it up to TN & head pain. But, when I finally did the necessary research, I learned so much. I was experiencing about a dozen of the "seldom if rare" side affects of Tegretol, including my arms/legs involuntarily jerking (tics), strange bruises and swelling in my hands as well as "out of body"-type sensations, to mention only 3. Also, Tegretol causes the body to accelerate metabolism and "wash out" fentanyl, so withdrawals were a daily occurence. Unbelievable! However, the bright side (knock on wood) is this: due to the hypersensitivity (I guess?), my TN pain level dropped dramatically. I still have some discomfort in my teeth and truly sharp pain if those teeth click while talking or chewing. But, things are so much better that, compared to the head pain, I can deal. I am taking a small, daily dose of gabapentin but I don't think that's doing very much. Well, that's about it. I was diagnosed one more time by a Neurologist, but I kinda think by the 3rd diagnosis, it lost a bit of luster, ya know? Ha!

If yr pain is gone it's o.k. Tegretol has the side-effects you described. Don't stop Tegretol abruptly. Do as the neurologist tells you. Once that medication was stopped after MVD (micro vascular decompression) procedure, the side-effects gone.

R C Murthy

If yr pain is gone, it's o.k. Tegretol has the side-effects you described. Don't stop Tegretol abruptly. Do as the neurologist tells you. In my case, once Tegretol was tapered off after MVD (micro vascular decompression) procedure, the side-effects gone.To combat MVD side-effects, I take homoeopathy.

R C Murthy