[AM222]

I posted in the new members section,but thought I'd post here too.

first I have to say I feel for everyone that is dealing with TN & ATN

It started for me about 3 months ago. I first saw a dentist,then oral surgeon,then my primary , then and ear,nose throat DR. I have been diagnosed with atypical TN. I just stared taking Tegretol.
I can't imagine living with this pain. I am scared beyond words.
I have a few questions. I am wondering what to ask,or what info to get when I see the Neurologist. I used to live in Boston with some of the best hospitals in the country,now I am in "the sticks". The doctors here are to put it nicely..not so great. I have to be informed as much as possible or I will slip through. Any thing I should be asking about,anything, would be welcome.
Also, this started at a very stressful time in my life. I am grieving the loss of my dog,that I loved with my whole heart and soul. I'm wondering if there is any chance that this can possibly get better as I feel less depressed?
3rd, has anyone tried acupuncture? If so,what was your experience?
Thank you for taking the time to read this. I am desperate ,life seems pretty bleak.
any help is welcome

[supermoo]

Originally Posted by AM222

I posted in the new members section,but thought I'd post here too.

first I have to say I feel for everyone that is dealing with TN & ATN

It started for me about 3 months ago. I first saw a dentist,then oral surgeon,then my primary , then and ear,nose throat DR. I have been diagnosed with atypical TN. I just stared taking Tegretol.
I can't imagine living with this pain. I am scared beyond words.
I have a few questions. I am wondering what to ask,or what info to get when I see the Neurologist. I used to live in Boston with some of the best hospitals in the country,now I am in "the sticks". The doctors here are to put it nicely..not so great. I have to be informed as much as possible or I will slip through. Any thing I should be asking about,anything, would be welcome.
Also, this started at a very stressful time in my life. I am grieving the loss of my dog,that I loved with my whole heart and soul. I'm wondering if there is any chance that this can possibly get better as I feel less depressed?
3rd, has anyone tried acupuncture? If so,what was your experience?
Thank you for taking the time to read this. I am desperate ,life seems pretty bleak.
any help is welcome

Hi I have had TN for 12 years. With no real help till this year. It's a horrible thing to put up with but you do learn to cope with it. They tried me on a drug called Lyrica as it has less side effects due to my disabilitys i have to start all drugs on a low dose 25mg for few days till reached a pain killing dose but got to 85mg and started reacting to it increased fluid and bad breathing as well So they want me to try Tegratol now just waiting for my GP to cross check some pills I'm on. It helps just to have some one to talk your fears and feelings with so If you need a natter I am here for you ok. xxxxxxxxx

[Catch]

I may have TN or ATN, but even for ATN it seems atypical according to my GP. Bottom line, I get severe pain around my right ear, burning, tender to the touch, sometimes ice pick though the eardrum. This can be accompanied or preceded by numerous other pains. It might be TN or just my MS. They haven't yet labeled it. I know it hurts. I also know that the steroids they gave me for my last MS flare put that into remission for almost a year.

And it hurts more when you're dealing with a recent loss. I'm so sorry.

As to arming yourself against "country" doctors, start with the links on this page. Learn as much as you can about the condition, understand the language. I have even seen some people discuss how to read MRI reports, etc.

Now, a word of motherly caution: While you have all this knowledge, be careful how you talk to your docs. Just put together a list of questions, and make a note if it brings up a new one. Include notes about possible tests to run, or specific results you don't understand. You have a right to understand all of it. Don't let the white coats put you off. Try to keep things short, but try not to leave dissatisfied or ill at ease about something. And if you do, leave a message at the office for the dr to call you --you have a question.

Basically, Inform yourself as best you can about your condition, and take an active part in your medical care. Understand what tests are being done ande why, etc. Who else but you has your best interests at heart?

Taking care of something while grieving is helpful too. Might as well take care of yourself, right?

[AM222]

Thanks for the kind words. I have been taking the tegretol for 2 weeks. Should it be helping? It isn't!

How many days can ya lie in bed suffering? I'm wondering how long I need to wait for the meds to kick in. I read something that said it should be a week or 2.

I am frustrated. But thank you for letting me know I am not alone. And I wish the best for both of you.

[Catch]

Sorry you're not getting any relief from the meds. Everyone's different and some meds may not work for everyone. None of the migraine stuff works for mine or my son's migraines. (In fact the migraine meds make us sick.)

My best defense against the pain (when its not too bad yet) is relaxation. Really, its the only thing that holds it off from getting all the way up to a 10, or more (I swear it's off the pain scale sometimes). I learned biofeedback and relaxation some years ago and relaxing the muscles in my face because of my migraines since I get no relief from meds.

If you have access to and interest in biofeedback training, I'd recommend it. I use the relaxation in conjunction with a meditation of acceptance (I accept the pain as part of me, just as I accept my eyes are green). It sounds simple, but if I can find a spot to relax and meditate when my pain is below a five I can get it to recede to a 1-2. If I'm at 8+ I can only get it down to a manageable 5-6, but with practice I find it works (for me).

I've had migraines (up to 5 days a week for months) for 25 years, TN pain for 5. No medicinal relief for either.