Comments on: Why Trigeminal Neuralgia Is Considered The “Suicide Disease”

By: Arizona Pain

Arizona Pain — Mon, 01 Jul 2019 21:56:27 +0000

In reply to Hank Kline. Thanks for sharing your experience!

By: Arizona Pain

Arizona Pain — Mon, 01 Jul 2019 21:55:59 +0000

In reply to Kirstin. Thank you for sharing your experience here Kirstin!

By: Hank Kline

Hank Kline — Sat, 29 Jun 2019 01:57:34 +0000

5 years ago I had brain surgery for a tumor on my Acoustic Nerve. The surgery went well with most of the tumor removed (benign).
This surgery left me totally deaf on my left side. 2 years ago, I had another brain surgery in the same area to insulate the Trigeminal nerve from a blood vessel. It was causing some facial pain (when shaving). Last year I experienced the first of many TN
attacks. My neurosurgeon recommended a ” Gamma Knife ” procedure, which targets low dose radiation from 200+ points concentrated on one focal point to damage the trigeminal nerve. This has relieved the pain for me so far (6 months ).
I hope I never have to experience the electric shocks in my jaw again.

By: Kirstin

Kirstin — Thu, 30 May 2019 06:16:48 +0000

I was diagnosed with TN 13 yrs ago. Then found out a year later, I have a very rare case of it, It affects both sides of my face, not at the same time thank god. And it hard for me cuz I can’t be on the only medication that works for me ( Carbamazepine) all the time because it affects my liver and causes me to be come jaundice. I do have to go through yearly MRI. I do live in a rural area and my neurologist is 2 and half hours away, but I was luck that a local doctor had the same condition, but 5 years the doctor did commit suicide. And for a long time it took me to find a doctor to look into my condition, and stop thinking was a drug addict. I only have 2 to 3 bad flare ups a year, but on a daily bases I get what I call electrical surges. And what scares me the most my son is saying he starting gets electrical surges. So if anyone want to know anything, just ask

By: Arizona Pain

Arizona Pain — Mon, 20 May 2019 18:15:20 +0000

In reply to TomC.

Hi Tom — We are so sorry to hear about your pain. Thank you for sharing your story here. Finding someone who understands what you’ve gone through can also be helpful. We also recommend reaching out to a support community so you can find support and help from people who also suffer from severe and chronic pain. Ours is at https://www.facebook.com/groups/11864244228/, or you can find other recommendations at https://paindoctor.com/chronic-pain-support-groups/. Wishing you the best.

By: TomC

TomC — Fri, 17 May 2019 11:56:04 +0000

I have YN and it popped up one day, I thought I needed a root canal done. Over time I have been taking Oxcarbphizine which controlled it for 2 years. Now it is back and with a vengeance. My doctor has added Gabapenten. Not a fan of all the drugs because it is about 80 percent effective. My pain moves from fore head to eye to teeth. Not sure of why I posted this I just need to talk about it with like minded people because I have found that until you have the pain you dont understand the condition.

By: Sergio Palala

Sergio Palala — Thu, 27 Dec 2018 22:15:24 +0000

Came to this website looking for some exchange and some relief. I am not here to describe my pain as it is similar to other noted descriptions, I have had both types of TN for over 5 years. I have tried some of the medications mentioned, but there is only one thing that makes it manageable for me… and that is smoking marijuana. It is like an aspirin for me in immediate relief for the pain, it does not take the bouts away but it does takes the edge off the electric “razor” like electric shocks. Makes life manageable. There are studies that show that Marijuana does bring relief to some patients with this disease.

Peace !

By: Grace

Grace — Fri, 16 Nov 2018 06:40:19 +0000

In reply to Douglas J Rucker. OH DOUGLAS … THANKS FOR SHARING YOUR STORY. I WAS JUST DIAGNOSED 2 MONTHS AGO AFTER REMOVING ONE TOOTH AFTER ANOTHER …. THEN FINDING OUT IT WAS THIS ISSUE. BEFORE SOMEONE FINALLY FOUND OUT WHAT IT WAS … I LITERALLY HAD A SIT DOWN WITH MY MOM & SISTER TO LET THEM KNOW I WAS QUITE SUICIDAL & WHAT I WANTED DONE WITH MY THINGS BUT MORE SO, MY BELOVED DOG. HE WAS THE ONLY REASON I DIDN'T FOLLOW-THRU. THANK GOD A SPECIALIST FINALLY DIAGNOSED THIS …. NO ONE (UNLESS THEY HAVE HAD IT) CAN UNDERSTAND THE PAIN & HOPELESSNESS …. ESPECIALLY WHEN IT HAD NOT BE DIAGNOSED. GOD BLESS YOU!!! HOPE YOUR LIFE IS AWESOME!!!!

By: Denise Clarke

Denise Clarke — Sat, 10 Nov 2018 05:36:39 +0000

In reply to Jaquenettemassage@gmail.com. I was diagnosed with TN two years ago. the attacks were seldom the first year but about a year ago they are happening more frequently and for longer episodes. The massage therapy that you mentioned, Is this something insurance covers? and where would I go for this type of treatment?

By: eric

eric — Thu, 20 Sep 2018 14:02:13 +0000

had bad pain inface for a year eye ear jaw teeth forehead scalp every day told ihad cluster headaches now been told by neurologist have trigeminal neuralgia am now on tablets not working as yet