Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

The pain in my mouth and teeth 24/7 intensified big time since my last blog post . I literally laid in bed at one point and thought I was going to break from reality. I was taking 2100 mg a day of neurontin, up from 300 and that is when the pain kicked in. I dropped it back down to 300 mg a day, and the pain got better big timeeeeeeeeeeeee. Im still numb. BY THE WAY, NEVER SUDDENLY GO OFF NEURONTIN LIKE I DID. I WENT THROUGH THREE DAYS OF HELL WITHDRAWING. I THOUGHT I WAS GOING TO END UP INSTITUTED, NO LIE.

Today, the pain picked up a bit again. I still can't eat meats and hard foods because it makes me hurt. I am to start a facial stimulator electrical pulse thing at therapy since my 7th nerve is paralyzed which I am  hoping truly is the cause of my facial tightness. ( they say it is).

Also, yesterday was the first day since going off neurontin to 300 mg that I didnt take naproxen Just thinking outloud, but that might be why I have pain . I KNOW I HAVE inflammation, hell my lip visibly swells AND the more pain im in- the tighter my face. They need to do something about this inflammation. I think Im going to ask for a course of steroids again.

I remember even when I had stomach surgery last year. I was in significant pain for five months until they thought it was inflammation. They put me on steroids and wham.. away went the pain.

My mouth and tongue, while still numb- are continuing to wake up more and more. Its important to note I am also b12 deficient. I am going to call my doctor to get another blood test and shot soon. If I miss a daily vitamin, I feel it.

Today is the first day in almost a year besides right after surgery, that I have slept during the day. I just want the pain to go away and never come back.

I got bolted in my face a few times this week. Theres nothing like being electrocuted while trying to relax from already being miserable. My gums and teeth have a way of zapping me too that drives me insane. For a brief moment, when they do zap me, it feels like the numbness stops. They say that thats "healing pains". Yeah? Its been almost five months. I havent run into anyone having trouble like this after an MVD besides anesthesia dolorosa patients. Im stillllllll waiting to get in with a new neurologist ( mine sucks) and neurosurgeon. And, tomorrow, I have to start making arrangements to go to a pain clinic.

\Still yet, I lay in bed alot with ice on my face and just cry. I wish I could get out of my own body.

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Comment by Audarah on February 8, 2012 at 7:08am

Thank u. Im so sorry to hear about your friend. :(

Comment by Jackie on February 7, 2012 at 4:20pm
Audarah, I am sorry to read this, I know you have not been on for a short while and I hoped it was because you were improving. You do seem to be having hell and I hope you are able to locate a Dr to help you very soon. You say you have not heard of anyone else who has had the dreadful time you have had, you are one of the worse I have read. However I have a great friend on here who is even worse than you, she has been in hospital almost all the time since May when she had the op. She has had meningitis and been critical twice. She has had so many more surgeries to try to stem the infection within her brain. She still languishes in hospital. The outcome for both of you has been awful and I feel so bad for you both. I am hoping for two miracles.

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