General Cycling Discussion - Trigeminal Neuralgia Rears Its Beastly Head Again!

My Trigeminal Neuralgia (http://www.tna-support.org) has returned after my brain surgery 18 months ago!

This condition, resulting from a blood vessel resting on and short-circuting the Trigeminal Nerve. causes extrremely painful electric-like jolts to various parts of the face, in my case the orbit of the eyeball, lips and teeth. It is known by its sufferers as "The Beast."

It has been described as "The most painful medical condition known to mankind." It was formerly known as Tic Doloreaux, and in days before treatment, the only known remedy was suicide.

It seems likely that the teflon pad which the neurosurgeon put in between the nerve and the blood vessel has slipped, allowing the blood vessel once more to "short circuit" the nerve (or perhaps another blood vessel is doing the damage).

Right now I am on Trileptal, a tegretol-like drug which slows down the electrical impulses, but also slows ME down. I am taking just enough to keep the pain to a minimum, but to try not to be in a stupor!

My options currently under evaluation are:

1. Another brain surgery.

2. A procedure known as "Gamma Knife" which deadens the TN nerve in the face.

3. A chiropractic procedure knows a "Upper Cervical Chiropractic" or Radial Atlas something or other.
this has helped some folks, but is rather "non-standard."

4. Continue on the drugs forever.

This whole thing tends to slow down my biking, as with the drugs, my legs can get heavy and tired.

Drat - and I thought I had it whipped!

Dang, DF. Sounds like you have a difficult choice to make before you can get to feeling better. I hope it works out ok.

My Trigeminal Neuralgia has returned after my brain surgery 18 months ago!

This condition, resulting from a blood vessel resting on and short-circuting the Trigeminal Nerve. causes extrremely painful electric-like jolts to various parts of the face, in my case the orbit of the eyeball, lips and teeth. It is known by its sufferers as "The Beast."

It has been described as "The most painful medical condition known to mankind." It was formerly known as Tic Doloreaux, and in days before treatment, the only known remedy was suicide.

It seems likely that the teflon pad which the neurosurgeon put in between the nerve and the blood vessel has slipped, allowing the blood vessel once more to "short circuit" the nerve (or perhaps another blood vessel is doing the damage).

Right now I am on Trileptal, a tegretol-like drug which slows down the electrical impulses, but also slows ME down. I am taking just enough to keep the pain to a minimum, but to try not to be in a stupor!

My options currently under evaluation are:

1. Another brain surgery.

2. A procedure known as "Gamma Knife" which deadens the TN nerve in the face.

3. A chiropractic procedure knows a "Upper Cervical Chiropractic" or Radial Atlas something or other.
this has helped some folks, but is rather "non-standard."

4. Continue on the drugs forever.

This whole thing tends to slow down my biking, as with the drugs, my legs can get heavy and tired.

Drat - and I thought I had it whipped!

I'm sure you've been here but.........TNA (http://www.tna-support.org/)

Keep your chin up. You are a cyclist, which means you know how to overcome.

I'm sure you've been here but.........TNA (http://www.tna-support.org/)

Keep your chin up. You are a cyclist, which means you know how to overcome.

Thanks, Was just in the process of editing my post to include the TNA link when I saw your reply.

Those folks and I know each other quite well!

For any one interested, there is an excellent book entitled, "Striking Back" (http://www.amazon.com/exec/obidos/tg/detail/-/0967239303/qid=1090893544/sr=1-2/ref=sr_1_2/002-5614010-1608858?v=glance&s=books)

i don't know what #3 involves. but given the info i have


3
1
2

or if #1 is too risky

3
2
1

Fight On Dnvr!

You seem like a pretty tough guy.. I'm sure you can beat it out somehow :-)

good luck

jeff

Hang in there Denver. It must be crushing to have gone through the surgery and to have it come back. We'll be "holding you in the light". I hope you find some relief soon.
Jean

Hang in there Denver. It must be crushing to have gone through the surgery and to have it come back. We'll be "holding you in the light". I hope you find some relief soon.
Jean

Thanks, I see the neurosurgeon tomorrow!

I did get 30 miles in today - :D

In reference to your trigeminal neuralgia, I am not a bike rider, have never ridden bikes, and do not intend to; but in doing research online on this matter, came across your posting.

I wanted you to know that there is a chiropractor in Oklahoma City who has had INCREDIBLE RESULTS in dealing with your condition.

I personally have a very good friend whose Aunt, age 88 with SEVERE TN, one week away from a major cranial surgery in San Francisco, flown to OKC, and in four days was completely and permanently freed of her condition. Stunned the surgeons in San Francisco.

The chiropractors name is Dr. Dan Rowe, 405-751-8880.

I do not represent him, and this is not a commercial for him. But I also have known him to have dealt with almost impossible conditions for patients who had been given up by the standard medical field.

I have no idea where you even live, but if your condition is that severe, it is worth a trip to OKC.

And by the way, I went through this whole process of signing up on the bike posting just to give you this one message.

Have a great day.
Jim Hays

my prayers are with you man i think with whats on your plate riding should be on the back burner.

my prayers are with you man i think with whats on your plate riding should be on the back burner.

Well, fortunately, right now, this is ancient history - not quite sure how this thread got revived.

Anyway, I took 2 Atavan tabs for the MRI and all the symptoms went away (sort of a medical miracle) and stayed away so far. But, now I get to worry about Atrial Fibrillation!

Fun time.

In reference to your trigeminal neuralgia, I am not a bike rider, have never ridden bikes, and do not intend to; but in doing research online on this matter, came across your posting.

I wanted you to know that there is a chiropractor in Oklahoma City who has had INCREDIBLE RESULTS in dealing with your condition.

I personally have a very good friend whose Aunt, age 88 with SEVERE TN, one week away from a major cranial surgery in San Francisco, flown to OKC, and in four days was completely and permanently freed of her condition. Stunned the surgeons in San Francisco.

The chiropractors name is Dr. Dan Rowe, 405-751-8880.

I do not represent him, and this is not a commercial for him. But I also have known him to have dealt with almost impossible conditions for patients who had been given up by the standard medical field.

I have no idea where you even live, but if your condition is that severe, it is worth a trip to OKC.

And by the way, I went through this whole process of signing up on the bike posting just to give you this one message.

Have a great day.
Jim Hays

Yes, it is known as Upper Cervical Chiropractic, and is pretty controversial.

I have researched it quite carefully, and might possibly consider it, but my pain has gone away after administration of two atavans for an MRI.

I am on a listserv with others with TN, and some of them use UCC, all with varying degrees of success.

Whatever you choose to do good luck.

I had symptoms for this at one time turned out to be a tooth (that needed a root canal) wasn't hurting the tooth but shooting pain to my nerves on the side of my face. Hopefully they will find a cure for this someday.

sorry to hear that dnvr. let us know what happens with everything.
good luck and take care.

Sounds like this guy would be worth a try to avoid the altogether more invasive and dangerous re-try at brain surgery!



. . .
I wanted you to know that there is a chiropractor in Oklahoma City who has had INCREDIBLE RESULTS in dealing with your condition.

I personally have a very good friend whose Aunt, age 88 with SEVERE TN, one week away from a major cranial surgery in San Francisco, flown to OKC, and in four days was completely and permanently freed of her condition. Stunned the surgeons in San Francisco.

The chiropractors name is Dr. Dan Rowe, 405-751-8880.

. . .

I have no idea where you even live, but if your condition is that severe, it is worth a trip to OKC.

And by the way, I went through this whole process of signing up on the bike posting just to give you this one message.

Have a great day.
Jim Hays

I was diagnosed with the same thing several years ago. Luckily(?) it turned out to be "Cluster Migranes" instead. The visions of bright lights and vomiting must have tipped the doctors off. Lol.

Anyway hope the beastie never comes back.

Regards.

I'm sorry to hear about this. A rough ailment.

I'll be thinking good thoughts for you, DF. Good luck.