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  1. #1
    Around now and then DnvrFox's Avatar
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    Biking and Trigeminal Neuralgia

    Man, I just get my biking in a real solid pattern, and my body says - hey, you are having too much fun, try this for awhile.

    The "this" is trigeminal neuralgia, an EXTREMELY PAINFUL short circuit of the trigeminal nerve at the base of the brain. The myelin gets worn off by a blood vessel sitting on the top of the nerve. It causes the three branches of the trigeminal nerve, which are in the jaw and face to give extremely sharp electric-like shocks to the face.

    I had to stop chewing, as each chew was unbearably painful. Every jiggle on my bike caused extreme pain. It has been described as "the most painful experience known to man."

    Anyway, I tried one drug, Neurontin, for three days and absolutely no luck. Yesterday, I got the doc to change me to Tegretol, and within two hours, I had some relief, and even ate a meal I could chew.

    There are some things that can be done through radiosurgery, and other approaches, which I will explore more fully in the weeks to come. For the time-being, the Tegretol is providing relief, although I still get some tingles. The problem with Tegretol is that it has significant side-effects, including liver damage and a low white cell count.

    Anyway, I wanted to find out if anyone else on the NG has trigeminal neuralgia and how they are handling it and biking. I have discovered a TN support group on the INET, but, sadly, no bikers. But, I am going to get out on the bike today, like it or not!!
    Last edited by DnvrFox; 08-16-02 at 06:26 AM.
    DnvrFox - still bicycling, swimming, walking and weight lifting at 74yo is participating a bit in BFN 50+.

  2. #2
    Mr. Cellophane RainmanP's Avatar
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    Dnvr Fox,
    Man, that doesn't sound good! Since the group you found doesn't have any cyclists I take it this is not a cycling-induced injury. Do they know what causes it? Some sort of repetitive motion or just an unfortunate juxtaposition of that particular blood vessel and nerve in certain people? Does it only occur in that particular spot? Can the condition be corrected or correct itself over time or will you have to rely on medication from now on?

    Good luck with finding relief.
    Regards,
    Raymond
    If it ain't broke, mess with it anyway!

  3. #3
    Around now and then DnvrFox's Avatar
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    Originally posted by RainmanP
    Dnvr Fox,
    Man, that doesn't sound good! Since the group you found doesn't have any cyclists I take it this is not a cycling-induced injury. Do they know what causes it? Some sort of repetitive motion or just an unfortunate juxtaposition of that particular blood vessel and nerve in certain people? Does it only occur in that particular spot? Can the condition be corrected or correct itself over time or will you have to rely on medication from now on?

    Good luck with finding relief.
    Regards,
    Raymond
    No, it is not cycling related, and yes, it is caused by the blood vessel rubbing against the nerve, and no one knows just why some folks have it and some don't. There are about 140,000 of us in the USA.

    It is real early in the treatment course, and there are a number of options of treatment available. I will be seeing a neurologist in about a month to discuss further options.
    DnvrFox - still bicycling, swimming, walking and weight lifting at 74yo is participating a bit in BFN 50+.

  4. #4
    Career Cyclist threadend's Avatar
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    Did this come on gradually with increasingly severe symptoms or just wham bam here I am?
    2003 Iceman Challenge - 2:34:55 - 897 / 2,000*
    2002 Iceman Challenge - 2:39:23 - 1093 / 2,186
    2000 Iceman Challenge - 2:49:18 - 1516 / 2,153
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  5. #5
    Fool O' crap sscyco's Avatar
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    Wow! Harsh. I had a kidney stone once, which was excruciating, but the pain lasted only a couple of hours and it still kicked my ars. This sounds much worse, and in your face, I can't even begin to imagine. Hang in there, and I hope the treatment and the ride goes well.

  6. #6
    Around now and then DnvrFox's Avatar
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    Originally posted by threadend
    Did this come on gradually with increasingly severe symptoms or just wham bam here I am?
    wham bam here I am
    DnvrFox - still bicycling, swimming, walking and weight lifting at 74yo is participating a bit in BFN 50+.

  7. #7
    Around now and then DnvrFox's Avatar
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    Originally posted by sscyco
    Wow! Harsh. I had a kidney stone once, which was excruciating, but the pain lasted only a couple of hours and it still kicked my ars. This sounds much worse, and in your face, I can't even begin to imagine. Hang in there, and I hope the treatment and the ride goes well.
    I've passed 4 kidney stones (ONE TOOK 24 HOURS) and that is MILD compared to this.
    DnvrFox - still bicycling, swimming, walking and weight lifting at 74yo is participating a bit in BFN 50+.

  8. #8
    Around now and then DnvrFox's Avatar
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    Hang in there, and I hope the treatment and the ride goes well.
    My wife and I went for a ride this am and it was great. The Tegretol is helping considerably.
    DnvrFox - still bicycling, swimming, walking and weight lifting at 74yo is participating a bit in BFN 50+.

  9. #9
    Slow Moving Vehicle Jean Beetham Smith's Avatar
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    So glad the med is helping. Hang in there, not that you have any choice. Are you having any spasms as in "Tic de la Rue"?

  10. #10
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    I have never experienced that problem while cycling. I have had neck pain from the front leaning rest position. I have had hand pain, which I try to prevent by covering handlebars with closed cell pipe insulation. I found that the heavy, clunker mattress saddle for $12.00 greatly alleviates saddle soreness. I have found that most shoulder and arm pain can be prevented by working out with weights for a period before going on a long tour.
    That problem you mention sounds a little more serious. I had not heard of it before now.

  11. #11
    Around now and then DnvrFox's Avatar
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    I have never experienced that problem while cycling
    Thanks for your interest, John.

    To reemphasize previous posts, this condition has ABSOLUTELY NOTHING TO DO WITH BIKING, except that it makes biking a lot harder to do: either you are in intolerable pain; or you are wobbly because of the medication (as I was this morning).

    Again, I was curious if anyone else also bikes with this condition - it appears that no one on the group does.
    DnvrFox - still bicycling, swimming, walking and weight lifting at 74yo is participating a bit in BFN 50+.

  12. #12
    Career Cyclist threadend's Avatar
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    My interest in trigeminal neuralgia as you described it, stemmed from something I experienced frequently up until probably 3 years ago. While I never experienced unbearable pain over any period of time, I used to get what felt like 480 vAC jolts down the left side of my face and neck into the top of my shoulder (yes, I've been hit with real 480/3/60 vAC so I do know the feeling). These jolts would leave the left side of my face somewhat paralyzed for a few minutes and then everything would be fine again. It used to happen a few times a year and it worried me terribly.

    No one I talked to had ever experienced it, when I read your description it sounded similair, mine seems to have gone away over time, hope you are as fortunate.
    2003 Iceman Challenge - 2:34:55 - 897 / 2,000*
    2002 Iceman Challenge - 2:39:23 - 1093 / 2,186
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    *estimated

  13. #13
    Around now and then DnvrFox's Avatar
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    No one I talked to had ever experienced it, when I read your description it sounded similair, mine seems to have gone away over time, hope you are as fortunate.
    One of the characteristics (good or bad??) is that it will come and go. I had one episode about 4-5 months ago which went away and did not come back until this week.

    Hope yours STAYS away!!
    DnvrFox - still bicycling, swimming, walking and weight lifting at 74yo is participating a bit in BFN 50+.

  14. #14
    human velocipedio's Avatar
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    It sounds truly awful. You have my support and certainly my admiration for bearing up as well as you seem to be. I would be a babbling, sobbing wreck in your place. You definitely have the stuff.

    I'm glad the meds are helping; I hope you can find a more permanent and complete solution.
    when walking, just walk. when sitting, just sit. when riding, just ride. above all, don't wobble.

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  15. #15
    feros ferio John E's Avatar
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    Best wishes for successful management of your condition, DF! I always enjoy reading your posts, and I shall let you know if I learn about any useful treatments.

    This is a very long shot, but do essential fatty acids, from which the body makes myelin, help any? I understand that your condition is mechanical, as opposed to an immune system attack on the myelin, but perhaps a neurologist who works extensively with M.S. patients may have some other ideas for you.
    "Early to bed, early to rise. Work like hell, and advertise." -- George Stahlman
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  16. #16
    Around now and then DnvrFox's Avatar
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    This is a very long shot, but do essential fatty acids, from which the body makes myelin, help any? I understand that your condition is mechanical, as opposed to an immune system attack on the myelin, but perhaps a neurologist who works extensively with M.S. patients may have some other ideas for you.
    Interestingly, it is common in folks with MS. Having it at an early age is a sign of MS.

    One of the supposed treatments, although with absolutely no scientific backup, is vitamin B-1, to help rebuild the myelin.

    So far, I get sick on the vitamin b complex!!
    DnvrFox - still bicycling, swimming, walking and weight lifting at 74yo is participating a bit in BFN 50+.

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