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Old 05-07-2007, 11:05 PM #1
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Default Trigeminal neuralgia

I have had this for about 15 years now. I had it about 5 years before I knew I had MS. It was very easily controlled by Tegretol. I take 200 mg in the morning and 400 mg at night. It has now raised its ugly head again. I tried to increase my dose of Tegretol myself but I couldn't remember how long to stay on just one more pill before increasing by another so I decided to quit playing doctor and call my own doctor! This isn't the best time to have problems with it. The air conditioner vent blows right on my face and just about blows me away.

For those who don't read in my reality show thead, my MIL, who has ben in a nursing home for several years, fell and broke her hip. She was in ICU for 5 days before she was stable enougth to do surgery. She was in ICU for a total of 8 days then went back to the nursng home 4 days later. So I have had just a wee bit of stress in my life.
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Old 05-08-2007, 01:42 AM #2
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I have trigeminal neuropathic pain - like TN but the pain is constant. Mine was caused by injury to the nerve. One of the worse triggers is cold air on your face. Tegretol caused me visual disturbances. Trileptal almost put me in a coma. I'm on Neurontin now 1200 mg. per day - I'm becoming intolerant to it so the MD will probably change me to Lyrica. Hope this helps in case your doctor mentions other meds. I hope your episode is brief! Janet
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Old 05-08-2007, 02:27 AM #3
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Sorry you have to go through all that Janet. I'm just hoping that it's not going to into a full excacerbation. I have a lot more fatigue right now and my legs seem weaker. It could be the heat, it could be the Tegrtol, it could be the stress.
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Old 05-08-2007, 11:20 AM #4
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I have TN too -- and they are not sure the cause. I'm currently in a state of unknown...but have been "surfing" the boards. I know how bad it hurts and my heart goes out to you. They've just changed my meds to 1200 mg Neurotin too.

Best Wishes
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Old 05-08-2007, 10:44 PM #5
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Today I'm just floating in Tegretol land.
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Old 05-09-2007, 11:08 PM #6
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I think my TN is better today and I'm not floating as much. But my DH is wondering why I dind't call out to the nursing home and see how his Mom is and take the car in for an oil change! Did I mention he works just 2 miles from the nursing home and this 'close to an excacerbation' is due to his Mom being so critical for a week? I felt proud that I took a shower and did a load of laundry today.
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Old 05-10-2007, 02:11 AM #7
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Ooooh, ouch, ouch and more ouch!

I feel for ya! I've had it but it was infrequent bouts lasting only for a bout a day a few times a year. But there's not question what it was... there's no other pain like it.

Sorry, I can't help with respect to pain meds... neurontin maybe?

I really hope you find some answers... this is one of the worst symptoms we can have I think.
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Old 05-10-2007, 03:08 PM #8
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I have been having a bout with TN today, NOT FUN. It usually flairs up every 4-8 weeks for a few days, or maybe just the initial "attack" then a dull ache for a few days. My dentist suggested that I might have this, as there is no other physical reason that I would be getting this pain. I don't have the official DX of MS just possible, for the last 2+ years.

I'm hoping that cymbalta that the neuro put me on for nerve pain will help. It's strange that I just started on it yesterday and I get this today...............
Pat
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Old 05-10-2007, 09:54 PM #9
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I have been lucky, not to have suffered from TN...(knocking on wood)
I did have Shingles of the facial nerves, though, so I know the horrible
pain you are suffering.

I am so sorry for your pain and I hope you find something to help you
all soon.

I have a question of you TN sufferers. Have any of you had Shingles?
I was just wondering if there is a link to TN, since the pain is similar. Valtrex helped my shingles and I have had no residual pain, which usually follows Shingles for years after the initial attack.

The same herpes virus which causes Shingles, chicken pox and Mono,
is thought to have a link to a cause for MS. I have heard of a few people
who take Valtrex at the start of a MS attack. It works for them and their
MS. so maybe Valtrex could work to stop TN attacks.

Just a thought...what do you think?
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Old 05-10-2007, 11:08 PM #10
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I don't know anything about shingles and MS. I just know that I am past the shot gun stage and just in the severe pain stage. It's off and on. Evening is the worst time when it gets close to shot gun stage. I will call my doc tomorrow and ask advice cause I don't want to have to wait for the weekend and hopefully I will enjoy Mothers Day.
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