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.

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

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.

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

Today I'm just floating in Tegretol land.

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.

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. :grouphug:

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

I have been lucky, not to have suffered from TN...(knocking on wood):eek:
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.:hug:

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?

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.

Medication and surgical options.

My wife who was diagnosed with MS over 30 years ago, has been dealing with TN-MS off/on for about 20 years. At present her TN, right side V2, is under control with 400MG Carbatrol (200MG every 12 hours). Lyrica worked last fall until Jan 07 when she switched to Carbatrol that worked for previous episodes. Carbatrol is Carbamazepine as is Tegretol; however, with Carbatrol she seems to adapt to the fatigue side-effect faster. I can't explain the detail difference between Carbatrol and Tegretol except that the Carbatrol seems to be longer lasting and every 12 hours dosage is fine. Unlike her previous episodes (see below), the TN on the right side has come and gone.

From 1987 through 1994, my wife had TN-MS on the left side V2 & V3, that progressed to the point where she was on 1,600 MG Tegretol and at various times Lioresal/Baclofen and Dilantin. LONG story made short, she also had multiple surgical procedures including Glycerol injections (1st on lasted app. 1 year, 2nd failed) and peripheral nerve resections (cutting peripheral nerves in face). Unfortunately the peripheral nerves regenerate and pain returns. In 1994, after a GREAT DEAL of research and multiple surgical opinions, she had SUCCESSFUL major surgery to severe the V2 & V3 branch of the TN nerve through a small opening behind the ear. This is a permanent procedure and results in permanent facial numbness but does not affect motor function and the face does not droop. After 13 years, she is still pain free on the left side of her face. Of course it is critical to find a Neurosurgeon with SUCCESSFUL experience with this surgery for patients with TN-MS!!!

There is a lot of info on the Internet including TN support groups, although not focused on TN-MS. For example, www.facial-neuralgia.org, www.tna-support.org. NOTE, TN-MS is rarely caused by that "typical cause" that is mentioned in the TN sites, compression of the Trigeminal Nerve and therefore "Microvascular Decompression" is rarely an option when MS is involved.

Although not for the faint of heart, there is a great deal of info, including medications, in "Striking Back! The Trigeminal Neuralgia and Face Pain Handbook" by George Wiegel and Kenneth F. Casey, M.D. You can order the book through the TN Support Groups and other online bookstores.

NOTE: When reading books like this and other info on the Internet, REMEMBER than NOT everyone gets all the symptoms so don't panic if you read about someone that has more symptoms etc. than you do.

Hope this helps.

Thanks for sharing that with us, MrBill.:) I'm sure it will be helpfull to those who suffer from TN.

Here's wishing you and your Wife well.

Mr.Bill, can you please explain the V2 and V3?

Sally, yes I have had shingles, chicken pox, and mono. But I don't have any diagnosis yet, just possible. Neuros I have seen don't seem to want to make a DX unless you have at least 2 "O" bands, I was listed as 0-1, with high IgG and MBP and numberous lesions with a second MRI showing more. And a bunch of other abnormal tests.

I am on to neuro #4, (well one of them I just saw once for a couple of minutes, he was so rude I got out of there ASAP). I'm hoping this new neuro will figure out what is going on what ever it is. Just about every mimcker has been ruled out, (some twice), the latest being celiac. Now they are talking about testing for MD, mitochondrial disorders, and sarcoidosis. I've been through the mill!

Everything takes so long, you wait months for an appointment, then wait longer to get a test, then wait to go back for results. In the meen time I'm going down hill, I wish they would just do everything at once and get it over with.

I go back to see the new neuro the end of June and she will decide whats next. I'm hoping she will order a new set of MRI's as it's been almost 2 years.
Pat

doydie, if you follow the first link it will explain what v1, v2, and v3 are. My TN is V2 on the left side. You have 3 branches of nerves that go to different areas of your face.
Pat

Thanks for the informative website. From what it looks like, I have V1 and V2. I'm not sure when it first came on 15 years ago I had V 3 or not. I remember that I wasn't sure whether I had TMJ, or needed to call an ear specialist, pchyciatrist, family doctor, dentist or eye docotr. I think that includes everything that would be in V 1, 2 or 3. At least my jaw isn't hurting now.

I couldn't sleep at all last night. Finally went to sleep at 6 AM. I remember having this really anxious feeling in my chest. I don't know if that had anything to do with the new pill or not. But when I was filling my pill keeper for the week, I found out that when I was dumping my pills in my hands last night, my Klonopin stayed in the pill container. So that would account for the not sleeping. Gosh, I hope I'm not that dependent on it.

Shingles and trigeminal neuralgia
 

Yes, I have had shingles on the third branch of the trigeminal nerve. If you're not familiar with the new diagnoses there is now a diagnosis code specifically for pain secondary to shingles. I think it's PHN (Post-herpetic neuralgia) - Everybody, please be careful. Usually if the nerve is damaged by shingles you should really think about having any of the "conventional procedures" for TN. I've had Botox to facial nerves twice, nerve blocks X 2, and neurectomy of the V3 branch in Sept 2006 (no relief). I do have other contributing factors but I can tell when that nerve is going to "break out" again. Sad story: my brother in law (doctor) told me that trigeminal neuralgia (of all sorts) is call suicide pain. He said that people really do take a gun and try to "blow out the nerve". I don't think at the time they even consider suicide an option - it's just a last ditch effort to try to stop the pain. FAITH and HOPE - that's what keeps me from acting on any impulses.

PS - to the person whose pain increases in the evening. It's "sun-downing" - pain really does seem to increase at dark. I "save" up a dose of medicine and take it then.

I hope this helps. Janet

I was lucky, Janet. When I had Shingles of the facial nerves, I took Valtrex right away and I didn't have the PHN...Thank God. The pain I had with the Shingles was definately suicidal pain.:eek: People ask me if I have the residual pain, as if it's a given, so I'm very lucky.

I'm so sorry you suffer from that..Ugh.:(

Hey, sorry I'm late for this - I never know which THREAD to check. Anyway TN and shingles. Yes Ma'am - trigeminal pain after a bout of shingles is real. That is only one of the causes of my trigeminal pain - but my MD gave me a big bottle of Valtrex 1 gram and I take one tablet at the first sign of an "outbreak". I haven't had a real break out of shingles in two years on this regmine. I hope this helps. Janet