I am 24 yrs old, and I don't care if I am not annoyomous any longer. I need support. I have had Trigeminal neuralgia (or TN here on out) ever since I was 18 months old. Typically, I experience it twice a year, every 6 months. Last one I had was Feb. 20th, 2011..and just like clockwork..6 months later..here I am.

Trigeminal neuralgia is one of those conditions where if you don't have it..or if you don't know someone who has is..chances are pretty good that don't know about it. Only about one in 30,000 people have it. It's been called the most painful conditions. And it sucks.

I need someone to rant to. I know it's a long shot, but I am posting on every board that I post on in blind hope. Thank You.

Having had an excruciatingly painful abscess a couple of weeks ago, I can somewhat imagine what you must go through with that. When that kind of pain hits, it's hard to think about anything else.

It's horrible, the make-grown-men-cry type of pain. Isn't there ANYTHING they can do?

Explain the pain....location, limits to your activity, etc. I never heard of it.

Yes, I know an awful lot about it.
It truly is a very painful disease to have.
Some more info would help, if you don't mind sharing.
How long do your flares last?
Have you been able to identify any triggers?
What treatment strategies (conventional and non-conventional) have you tried for the flares?
Have providers recommended any (conventional or non-conventional) prevention meds or strategies?
Any other neurologic symptoms occur with the flares, or during remission?
Do you suffer from any other conditions?
Do you have to wear any specific gear (head/neck) for your work or pleasure activities?
If you'd rather chat via personal e-mail, it would be Ok for Susan (Admin) to connect us. I can't give professional medical advice, but I can offer a sympathetic ear and maybe some suggestions for your further study and discussion with your neurologist/primary doc.

The pain originates from the ganglion of the Trigeminal nerve within the brain and can be triggered by cold/hot/ touch/eating.Like many things there is a pyramid of treatment options.

It is not an inflammatory condition so anti-inflammatory analgesics do NOT play a role. The best drug options are the membrane stabilizers which fit in the same family as the anti-epileptics with Clonazepam & gabapentin being the most useful add-ons to a painkiller regime.

Interventions include -freezing the nerve-often done by oral surgeons-gives limited & temporary relief.
-stereotactic(computer guided ) ablation of the ganglion-done as a day procedure-talk to a neurosurgeon.
- A Janetta procedure- a craniotomyi.e. opening your head to find the ganglion. There is a very small artery which in sufferers is enlarged and presses on the ganglion. The operation isolates this and wraps ot to stop the pressure. Talk to a neurosurgeon .

Good luck.

So sorry you are having to go through this. I suffer from cluster headaches, which, like your condition, happens in cycles. Fortunately, I haven't had a cycle in a few years, which means I may have finally outgrown them (I am 46). I really hope that you are feeling better soon.

Hi,

Normally Tri-gem is treated (at least in the UK) with Tegretol/Carbamazapine. As a poster mentioned above Tegretol is an anti-epileptic/anti-seizure medication.

Normally (again in the UK at least) doctors would attempt to treat the patient with drug regimens, and usually flare ups settle down so that you no longer have to take them daily. However, when cases are really difficult/prolonged the current 'en vogue' method would be gamma knife/stereotactic radiosurgery. (This is effectively a form of radiotherapy but very very specific).

Speak with your healthcare provider and see what they can do. Normally tri-gem is worse at night, and particularly can be bad if you get caught in a cold wind. Try to wear scarves when you're outside, and see if you can do anything to ease the pain. Unfortunately because it's nerve related most analgesics won't help although opiates will take the edge off it for a while.

Hope it all works out for you!

Much love.

Ax

So Sorry I haven't posted here and answered any of your questions; I have slept all day, since Monday and Tuesday were pure hell for me. To answer some questions..

@honestone: The pain occurs in my jaw-line, and part of my cheeks. Most of the time, TN only occurs in one side of the face; however I experience mine on both sides.

Everyone experiences and takes pain different; but mine feels like an electric shock going through my jaw. The episodes can last any where from 6-36 hours. I was lucky yesterday; only was in pain for about 8 hours. I went to the ER, and they gave me a shot of something. They also gave me some Hydrocodone and a refill on my Tregetol.

@Mrs. Solar Flare: Like I previously said, the pain lasts from 6-36 hours. The longest being, according to my Mother, was when I was a little girl and it lasted a full 48 hours. But it comes in waves, if that makes sense. I will have a shock of pain, which lasts for a very short time, I would say 5-7 seconds tops. Then I will have a 30-45 second break, then break; then another 5-7 shock. This process lasts for hours. For some unknown reason, I do get "breaks" though. Yesterday when my friend came over to take me to the ER, it suddenly stopped. For about 10 minutes. It started again, and then we were on our way. And again, as soon as we got the the ER, stopped. Didn't flare up again until we were leaving. Fickle, isn't it?

I do have very mild cerebral palsy, and with that cerebral palsy comes scoliosis. Curvature of the spine. Again, thats also very mild. I am not for certain in the TN is a byproduct of either of them. I am very curious, though.

OxDoc,

I am on Neurontin (which I believe to be the generic of Gabapentin, or perhaps the other way around.) Thats used as a preventative. While Carbamazepin is used as a reactive for me.

I was formally diagnosed on March 30th, 2011. It was around September 2010 that I gained a knowledge of TN. Before that, we had no idea as to what was going on. None. No medicines, no ER visits when I had them. I just rolled with them and took them as they came. It was very emotional when I found out about TN, and even more so when I was finally pinned with it.

Just imagine 22 years of having this severe pain. 22 years of being undiagnosed and under treated

/rant. Sorry!

i have peripheral nueropathy due to undiagnosed type 2 diabetes.
the symptoms below are EXACTLY like mine! however that long of a duration i have never experienced!! damn i cant imagine it! even with 600mg of gabapentin i can still feel it! my heart goes out to you especially since you have had it so long!! the absence of pain...there is none! but the gabapentin now does a good job masking the pain! good luck youngin!!


but mine feels like an electric shock
I will have a shock of pain, which lasts for a very short time, I would say 5-7 seconds tops. Then I will have a 30-45 second break, then break; then another 5-7 shock

I had a related condition called Hemi-Facial Spasm. Instead of spasms of pain, I had uncontrollable twitching on the right side of my face. It's similar to Trigeminal neuralgia in that it's caused by a pinched nerve near the brain stem, but in the case of HFS, the seventh cranial nerve is pinched instead of the fifth.

Over the years I went to many doctors searching for an explanation or cure for the condition, but not one doctor I ever saw had anything to offer (other than useless drugs and counseling). Out of desperation I sought for answers on the internet, and eventually found a support group for the condition. The vast majority of people online suggested I go see a Doctor Peter Jannetta in Pittsburgh, PA to have him perform micro-vascular decompression surgery (brain surgery). The procedure goes like this: they drill a hole about the size of a quarter in your skull behind the ear, then carefully cut through the brain tissue until they find the offending blood vessel, they insert teflon padding between the nerve and the blood vessel, and when it appears that the nerve is no longer being compressed, they sew you back up and you are on to recovery.

I desperately wanted to go visit Dr Jannetta in Pittsburgh, but it was going to cost a fortune to make the pilgrimage and my insurance was probably not going to cover it. So, decided I would see what else I could find online. After doing a little research I discovered that at the University of Utah hospital there is a neurosurgeon named Ronald Apfelbaum who also performs this type of procedure. As it turns out, he is one of the worlds leading experts on HFS and Trigeminal Neuralgia, and has a success rate rivaling his counterparts in Pittsburgh.

I immediately called the hospital and set up an appointment to see him a week later. It took no longer than 15 minutes in his office for him to identify the condition, tell me everything I ever wanted to know about what was happening to my face, and have me scheduled for surgery. Exactly two weeks later woke up from surgery permanently cured of this wretched condition. Seven years of pure hell was finally over, and I was healed!!!!!

I don't know if this will work for you, but if you are suffering as much as I was, you are desperate for relief and will try anything. If that's the case, you owe it to yourself to call Dr Apfelbaum to see if he can help: http://medicine.utah.edu/neurosurgery/faculty/apfelbaum.htm. If your condition is anything like mine, surgery is the only way you will ever have any permanent or satisfying results. Don't waste your time with the drugs or the botox injections. They don't fix the problem, only cover the symptoms.