A week ago I was dx'd with TN . I've been on 3 different medications to try to kill the pain.

Tegretol~ was messing up how I processed things in my head.( mixing letters up in words)
Toradol~ didnt do didly for me pain wise.
Neurontin~ still not touching it.

I went to my dentist yesterday on a scheduled routine checkup. Told them of the TN. He checked my mouth out well for silent abcess's etc. Took an extra set of xrays also. Nothing appeared.

So I called my Family doc yesterday to let them know what happened at the dentist. My Doc was not in that day. So they called me back a bit ago. Said that they could put me back on the Tegretol ( uhhh no thanks) or be referrred to a neurologist ( ick ) Just what I need is another doctor. They are calling to give them the referral this morning . So this afternoon I will call to make the appt .

Is there any way shape or form I can deal with this myself? Without having to go to yet another doctor? I am already on around 13 medications for other problems I have. I am so sick of having to take all of them . Not to mention its not affordable.

Not really, if you've got classic TN. And if you had pain relief with Tegretol, that's a good indication that's what you've got. The only meds that really work are the antiseizure meds. Anti-inflammatories (e.g. toradol, etc.) and the usual pain meds (vicodin, etc.) do nothing, as you found out. Your body does adjust to the side effects over time (confusion, lethargy, etc.) or ask to try Trileptal - a cousin to Tegretol with far fewer side effects and better pain control (at least that's what several people have reported).

You should go to the neurologist to confirm the diagnosis and rule out MS or tumor causing the pain. There are lots of complementary and alternative remedies you can try, but if it's classic TN caused by a microvascular compression of the Trigeminal Nerve root, they probably won't help. But there's no test, yet, that can confirm the compression unless it happens to show up on one of the new, more sophisticated MRIs.

There are surgical procedures, but you'll need to research those thoroughly. Visit the sticky threads at the top of the forum and get a copy of the 2004 edition of Striking Back! The Trigeminal Neuralgia and Face Pain Handbook (507 pages, $24.95) by George Weigel (former TN sufferer) and Ken Casey, M.D., a neurosurgeon who specializes in treating face pain. You can order it directly from the Trigeminal Neuralgia Association (who publishes it - you won't find it in the bookstores as it's not exactly a bestseller) by calling 800-923-3608 or 352-331-7009 (Gainesville, FL) or by visiting their website at www.tna-support.org (books available at https://www.tna-support.org/storefro...ducts.asp?id=2

Good luck and let us know how you make out with the neuro. Be sure he/she has treated other TN patients and has experience.

Jean

Thanks Jean. My appt unfortunately isnt until Oct 17th. Too far away for my liking. But it will have to do being a new patient. Lots of info to go over I see... KD told me to come here last week . But with all my problems spelling being on Tegretol and all.. I didnt want to make a spectacle of myself. This weeks been crazy as usual with family problems and today I found out my therapist is moving. I feel like my world is coming down on me here.

Thanks again for the info. I will look all that up in a bit. Gotta wash dishes now. ugh ...

A month isn't bad for a neuro, especially one who is familiar with neuropathic face pain. I got referred to what turned out to be a migraine specialist and he was booking 6 months out. So I went with the neuro with the first opening - who then tracked down the first neuro for a consult while I waited in the office, so that worked out.

Anyway, here's some more info for you, since you've got some time to prepare - http://www.fpa-support.org/providers...onwithHCP.html

This is on the Trigeminal Neuralgia Association's (TNA) new website. Wander around there as that's the best resource for information, support, etc. other than the book.

Good luck and holler if you have more questions.

Jean

Saw my neurodoc today. He ordered and EEG for me in the morning and then a MRI of the brain next Thursday morning. That is pending on precertification thru my insurance. He also put me on Trileptal but the thing is with my losing some of my income.. I cant afford it . Nor most of my meds. Waiting for a few bills to get taken cared of and trying to get meds switched over to the $4 and $9 Walmart plans on what they can. The rest right now will have to just wait till I got the money again.

I wish it were legal to share medicine, I have so much Trileptal left over. I was just telling my friend the other day I had problems throwing pills away because there's so many people that could use them.

I just had a flare-up yesterday which is still here today. I haven't had one in ages, and this one is back with a vengeance. To be quite frank with you, I've had nothing help with pain except relaxation techniques. The more I stress the more it hurts (I tend to clench my jaw like an idiot). I got this tea tree oil bath stuff J/A/S/O/N brand from the organic market (sold at CVS, too). That scent and the Chamomile really calm me down. I just sit in my tub, soak up the warmth and good scents and sometimes, wallow in self pity.

I also use warm wash rags on my head, but they get cold so fast it's not really that enjoyable for long and heat packs aren't very good to use for long as the heat increases blood flow which could make pain worse (so I hear) and ice can trigger pain.

I'd like to point out I was born and raised in Cincinnati, I take it you're a fan!!

Trileptal didn't work for my pain (or my seizures), it actually gave me headaches instead. They said I may have been allergic. Who knows?

Hoping you find some relief. It's a crappy place to be in, that's for sure. I know how icky it gets when it's cold (heck, it even gets cold here in CA) - I won't miss snow one bit.