General Cycling Discussion - Update - Biking & Trigeminal Neuralgia

As some of you know, I developed a condition known as Trigeminal Neuralgia, in which the trigeminal nerve is injured by nearby blood vessels at the base of the skull, resulting in a "short-circuit" to the facial muscles, giving electric-like shock and pain, described as "the most painful condition known to mankind."

One of the drugs used to prevent this short circuit from occuring is Tegretol, which I have been taking, and which is also used to prevent seizures on the same theory.

I have been taking about 400 mg per day, sometimes a little more. One of the side effects of Tegretol for me is drowsiness and lethargy, so I take just as little as possible. When I start to feel that terrible tingling around my eyes and face, I pop 1/2 of a pill, trying to walk that fine line between the benefits of the Tegretol, the pain of the condition, and the side-effects of the Tegretol.

Anyway, it does tend to slow down my biking considerably, but I still get out and can do 15-20 miles.

I am scheduled for an MRI (I got terrible claustrophobia on the one I tried last week) next Tuesday to see exactly what is going on, and will see a brain surgeon in late October. Most likely, but not for sure, I will have brain surgery to repair that wearing and touching of that nerve by the blood vesel and they put a Teflon patch in to help prevent further irrititation. This operation is 85-90% successful.

Just to update my friends at Bike Forum.

I had an MRI a few months ago. I just closed my eyes, relaxed as though I were going to sleep and dreamed of the last beautiful bike ride I had. The MRI was over even before I got 10 miles into the ride.

Hope it goes bettter for you this time, and your operation brings a full recovery and health. You're one of the stabilizers here on the forums. Take care.

Yes, thank you for the update, Mr. Fox. I'm sure we all wish your success in this battle.

You never know when your experiences might be very timely for someone else.

Originally posted by L J Horton
I had an MRI a few months ago. I just closed my eyes, relaxed as though I were going to sleep and dreamed of the last beautiful bike ride I had. The MRI was over even before I got 10 miles into the ride.

Was yours an MRI of the head? They are quite different tnan an MRI of the other parts of your body. Your head is clamped in a little tiny space with no movement, like being in a tube. No way I can go to sleep. But, I have always had to be very aware of my environment and what is going on. I can not sleep on a plane, for example - got to check and see what is happening at all times!!

Mine was a "thin section" MRI - they can not use the "open" MRI for that.

Yes. Actually I had 2. One for my head and one for my torso.

But I'm able to relax and sleep almost anywhere. It's a bit like self-hypnosis. The other thing is, I know the best way for me to help them help me is to remove myself from the arena. I had confidence they were not going to cause me any physical harm and being relaxed might allow them to get a better picture for the use of my doctor.

Also, I try teasing and laughing with them. It helps the relaxation process. I think it helps them too. They seem to become freer with their comments and encouragement.

Why do I feel as if I am defending myself for having a perfectly natural (and unavoidable, for some of us) reaction - claustrophobia?

Denver we all have phobic reactions to some situations. However, if you have enough time before your next MRI you might find some of the self-hypnosis techniques helpful. Ask your MD or the MRI center staff what their experience has been. It takes a while to learn self-hypnosis and to be confident in it's effects. If you don't have time to try that route, talk to your MD about other alternatives. I don't think a MRI would bother me, but don't put me in a crowded elevator or hallway (please).

Denver, hang in there, bro.

:thumbup:

Good luck, DF! I'm sure everything will work out for you.

Originally posted by Jean Beetham Smith
Denver we all have phobic reactions to some situations. However, if you have enough time before your next MRI you might find some of the self-hypnosis techniques helpful

Think I can learn these by next Tuesday? (1 day?)

Hey guys, when I told my mom about my phobic reaction to being crammed in a tight tube with no ability to move my head for 45 minutes (at least that was the plan) she laughed and laughed. EVERYONE she knows/knew who has gone through one of these has had EXACTLY the same experience, and no one will EVER do one again. And that is at least ten folks. And, I am fine in elevators, have painted the INSIDES of closed water tanks for hours at a time, and have never had a claustrophobic reaction before!!

And, I guess it might be an understatement to say that the technician doing my MRI was not what you might call a "joking kind of guy." So much for the fun and games theory. Incidentally, it was this same non-joking technician who told me this was a VERY common reaction.

So, I will try it again on next Tuesday with some Versid, and if that doesn't work, I will have it while anesthesized.

By the way, NO ONE (including myself) has ever been able to hypnotize me.

Denver, I hope nothing I said put you on the defensive. It was not my intention. I was just telling you how I handled it. Luckily I had 2 warm and charming women preping me for the procedure and one of them was the actual technician.

Good Luck Tuesday. Hope it goes better for you.

Versed is great stuff, had it for my Lymph node biopsy, no memory of anything from the time the nurse said "I'm starting the ver..." to her saying "we're all done". The best part was no hangover feeling or drowsiness later in the day. I couldn't drive home legally, but I went home and did chores around the house the rest of the day. It will get you through Tuesday fine, and we will all be rooting for you.

Originally posted by DnvrFox


So, I will try it again on next Tuesday with some Versid, and if that doesn't work, I will have it while anesthesized.


Denny, when I had my "accident" (ya, right) I had an MRI.

I was on Demerol for pain. I barely remember it.

Can you close your eyes and get some beauty rest? Ask them to play some music you love.

If anyone cares (and I don't know why they would) I got through the MRI just fine today with a very low dose of Versid.

The major difference was the technician and nurse, who stayed with me the entire time with her hand on my foot. Makes a world of difference to have that contact with reality, and she kept me updated as to how we were doing - really important for my personality type.

The first technician would NOT allow my wife into the MRI room, where she could have done the same thing, and I am pretty sure if he had kept me updated and she had held my foot, I would have been fine the first time.

The Versid dosage was so low that I totally remember the whole thing.

Anyway, the Trigeminal Neuralgia was FEROCIOUS in its pain today. Finally got it under control with a whammy of medicine. Hope the MRI gives some clues as to where to go with this.

Glad I could get in 40 miles of biking this weekend.:D

Oh, by the way, I have very hard veins for the IV. They took 45 minutes, punctured both hands and wrists, one foot and finally succeeded on the other foot. And they wanted to know why my blood pressure was elevated!!

DnvrFox,

I KNOW EXACTLY WHAT YOU'RE GOING THROUGH!!!!! I HAVE THE SAME PROBLEM! But it comes and stops.

Mine starts right behind/above my ear and the sudden sharp pain shoots down behind my left ear down to my neck. But before I can say "OUCH", the pain is gone. Then about 30 seconds later, it'll come back. The timing of the sharp shooting pain sometimes shoot every 10 seconds....while other times, it'll only shoot only once every 15 minutes. Once this stops I would be free from the sharp shooting pain for weeks or months. But in the beginning, you would still feel the soreness of the part of your face/neck of where the pain was just by lightly touching it. It's one of the worst feelings I've had.

The doctor also gave me a drug, but I didn't want to take it. I asked the pharmacist and she said it's similiar to a seizure drugs.

I've been free of this pain since last year (about 9 months ago). The MD explained to me that a vein/artery may be touching my trigeminal nerve and when blood is pumped through the vein/artery/vessel, it irritates the nerve....which causes this pain.

I hope your pain stops, I know exactly what you're going through. You just can't focus with that pain constantly pounding you, wearing you out. Sometimes I make a face, when the pain hits, and I notice people looking at me as though I was a ******.

BTW, how old are you? I just wanted to see if we have anything in common. I'm 24.

I've had this since I was a teenager, but the pain would stop in a few days and it won't come back for a long long time. I always thought it was stress. But I would opt for the surgery too. I wouldn't want to be popping pills everyday of my life.

I am 63 yo

It started about 1 year ago with infrequent pains.

During the last two months it has gotten incessantly more painful, and today it just would NOT stop. It depends on which of the three branches of the Trigeminal nerve is affected. Mine happens to be my right eye orbit and below, and all day I had sharp, never-ending electric shock like pains around my right eye as if someone had put one side of an electric wire (110 volts) above my right eye and the other side by my cheek and just turned it on and walked off and forgot it.

To be honest with you, I ended up crying, which I have not done for 63 years from ANY pain.

Finally, I was able to see the MD and get more Tegretol (the seizure medication you mentioned) and by taking a very large amount was able to get it settled down. Right now, it is finally okay, but the effects of the Tegretol can also be devastating, including liver damage, lessening of cognitive function and bone marrow suppression.

There are other drugs, but Tegretol seems to be the most effective.

There is a Trigeminal Neuralgia support grouup on the internet, and a national association, plus a couple of good books about this condition.

I see the brain surgeon on October 30. I pray that the microvascular decompression (MVD) is what can resolve this curse. There are between 40,000 and 140,000 (depends on who you ask) sufferers of TN.

The earlier you get treatment such as the MVD, the better. BUT, frequent remissions for periods of months and years are common. However, it always seems to come back stronger.

I've been free of this pain since last year (about 9 months ago). The MD explained to me that a vein/artery may be touching my trigeminal nerve and when blood is pumped through the vein/artery/vessel, it irritates the nerve....which causes this pain.

As i understand it, the vessel actually rubs the myelin off of the nerve, causing the nerve to short circuit with any appropriate stimulus, giving you the pain.

Denver,

I glad you got through the MRI today. Although I don't post often, I usually read what everyone else posts. I think about my BF family often.

Denver,

I had the "opportunity" to have to take Tegretol (to combat an MS-Attack) and I have to agree with you that it really puts you in a fuzzy ball.

I also had a MRI and can empathize with you that it's rather close-in inside that thing. The worst thing that I felt was the necessity of keeping my eyes stationary. You might inquire if you could have a mild sedative before having to climb inside.

I hope that things start to look up for you, and I'll be thinking of you. For what it's worth, I've not had a MS attack (crippling seizures at the time) in over 11 years.

Take care and good luck!
Tom

I've not had a MS attack (crippling seizures at the time) in over 11 years.

"MS" - Multiple Sclerosis??

That is what it typically means here.

Hi Denver,

That's funny...


"MS" - Multiple Sclerosis??

That is what it typically means here.


That's what it means here, too :)

take care,
Tom

Take care of yourself DFox. Keep us updated. I hope you are riding like the wind as soon as you can. ;)

I'm happy to hear that you had a more compassionate tech 2nd time around. I wish there was something we all could do for you. My graduate advisor had Tic de la Rue, and was often away because of attacks. That kind of pain is very debilitating, and the anxiety about when the next attack may come can be almost as much so. You are in our thoughts. Biking has given you the fitness you will need to combat this problem. Please keep us posted, we all care about you.

Originally posted by Jean Beetham Smith
...we all care about you.

:thumbup:

:salute:

Fox, good luck to you. How are you holding up? Are you still on schedule for the 10/30/02 date? Mine just started acting up again today. I will go see a neurologist this Wed. Could you give me some guidance? What should I expect? What test will they do on me? I can't stand the pain any longer, it's difficult to function as a human being in public with this throbbing/electrical pain constantly pounding you. I'm willing to look into surgery if it is what it takes to stop the pain. Did your doctor(s) discuss what the risk of surgery was?

You mentioned internet support groups, could you recommend one? I'm sorry if I seem to be "using" you, but the pain has gotten really severe in the past 24 hours, I don't want to spend hours looking for a support group....I've tried and nothing really came up after a yahoo/googlo search.

All I want to do is get in bed and sleep, that's the only time the when the pain goes away :(

Fox, my heart will be with you on 10/30/02. Please give us an update ASAP.

Further update on the Trigeminal Neuralgia.

My insurance company denied my attempt to go to Pittsburgh (Allegheny Hospital) where they do the most cranioectomies for Trigeminal Neuralgia in the world. Even if they had approved, because it is out-of-network, I would have been out many thousands of dollars.

So, Tuesday, I see a local neurosurgeon who has also done a fair numbers of this operation, which is called a Micro Vascular Decompression (MVD) where they drill a hole in your skull, and using microsurgery, either remove the vein that is pressing on the nerve, or if it is not a vein, but an artery, they put a Teflon shield to get the rubbng stopped.

The TN has gotten worse the last few weeks, and I was in a "Toxic" condition with the Tegretol as I was taking too much.

I do not yet know what the neurosurgeon will recommend, but I have talked with a number of his ex-patients who speak moist highly of him, in addition to the recommendation of my nephew, who is also a neurosurgeon in Tennessee.

Originally posted by Cadd
Fox, good luck to you. How are you holding up? Are you still on schedule for the 10/30/02 date? Mine just started acting up again today. I will go see a neurologist this Wed. Could you give me some guidance? What should I expect? What test will they do on me? I can't stand the pain any longer, it's difficult to function as a human being in public with this throbbing/electrical pain constantly pounding you. I'm willing to look into surgery if it is what it takes to stop the pain. Did your doctor(s) discuss what the risk of surgery was?

You mentioned internet support groups, could you recommend one? I'm sorry if I seem to be "using" you, but the pain has gotten really severe in the past 24 hours, I don't want to spend hours looking for a support group....I've tried and nothing really came up after a yahoo/googlo search.

All I want to do is get in bed and sleep, that's the only time the when the pain goes away :(

Fox, my heart will be with you on 10/30/02. Please give us an update ASAP.

WOW, I was writing my update as you were writing your message to me.

There IS a Trigeminal Neuralgia website with an email where you can get subscribed to the listserv support group. I am on the wrong computer, but will go downstairs ASAP and get the address.

The ESSENTIAL DRUG (AND DIAGNOSTIC DRUG) for TN is Tegretol, and about 600 mg of Tegretol or so should give you relief withing 1 hour.

About neuros. You will be lucky if you find a neurologist who knows anything about TN and is willing to work with you.

He may prescribe Neurontin - but only about 30% of folks get much relief from Neurontin. I am also using Trileptal, a deritivative of Tegretol, which gives (to me at least) similar pain relief without near the side effects. I sort of alternate the Tegretol and the Trileptal.

Well, I am going to my other computer and am going to get the address of the TN society for you. From there you can subscribe to the listserv, which is subscription only.

The URL is

http://www.tna-support.org/

from there you should be able to subscribe to the listserv.

The listserv is:

TN-L@LISTSERV.UARK.EDU

You may be able to subscribe by sending them an email.

ALSO, CALL YOUR PHYSICIAN NOW. YOU HAVE A MEDICAL EMERGENCY. GET YOUR PHYSICIAN TO PRESCRIBE TEGRETOL RIGHT NOW AT A 24 HOUR PHARMACY.

The neuro will want to treat you chemically with drugs. The neurologist will want to do surgery. There are also a number of other options. You can find them all at the website.

Oops. I said I alternate Tegretol and Neurontin. NO, I alternate Tegretol and Trileptal. Neurontin did not help me.

hi fox my wife recently had a MRI scan on her head for a petuatary gland tumer & she found it prity scary, they suggested she bring her favorite c.ds & they played them while she was in there, she also has found the support web sites very helpfull ,hope all turns out well for you in the future.

I went to a neurologist today. He examined me and gave me an EEG. It was cool...I was hooked up with many many wires to my head/ears/chest....every time I blinked, I would see the result on paper....everytime I made a funny face, I would see the result on paper....I kept doing that until the nurse/technician told me to stop.

The result....he doesn't think I have Trigeminal Nerualgia.

He think it's Occipital Neuralgia, and prescribed Butalbital Apap Caf (a pain killer) for me.

He thinks it's a pinched nerve. The cause is probably a virus.

I insisted on a MRI or a CAT scan (not sure what each one does).

I was shooting questions, I guess he wasn't in the Q&A mood. He said to come back in a week if the pain continues with the medication.

I'll see how it goes. I'll probably do some more research on my own, and try to find a reputable MD.

Just like DnvFox, I always need to know what's going on. I always ask questions. I always want to know what each drugh is....how it affects me....a simple "it stops the pain" won't be good enough.

I'll let you guys know what I find out about this disease or how the medication is going.

That sounds like good news (I think).

My Micro Vascular Decompression (where they drill into my skull and rearrange the veins and arteries around my trigeminal nerve) is scheduled for November 18th.

I appreciate all of your prayers.

Originally posted by DnvrFox
That sounds like good news (I think).

My Micro Vascular Decompression (where they drill into my skull and rearrange the veins and arteries around my trigeminal nerve) is scheduled for November 18th.

I appreciate all of your prayers.
You got 'em Dnvr. :)