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athos
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Trigeminal neuralgia??
« on: Jul 31st, 2003, 5:45pm » |
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has anyone been doagnosed with trigeminal neuralgia?
I just moved... got a new neuro today. not sure if I should be impressed or not or be very concernd.
She is taking me off all meds.... and putting me on Baclofen/Zanex(so I can sleep through my headaches.. ya right) I have never been on baclofen, but not convinced that a muscle relaxer is prudent at this juncture...
She wants to believe that the pain that I am dealing with is Trigmenial Neuralgia... I guess if you boil it down al that is nerve pain... but my symptoms are to cluster specific to be generalized like that....
She will not prescribe a preventative.... I have been on most, but combinations such as Lithium and verapamil would interest me. I have been on just lithium.
I am alot closer to Scottsdale, AZ, I may just go back to the Mayo clinic and see Dr. Dodick... Great!!! Neuro... Someone who I feel knows more about headaches than I do... I am not saying I am an expert, but it seems that I know more than the other docs that I have seen when it comes to CH... Thanks to this board.
Some docs, it is as if they need to go and look it up in some 10 year old medical journal.
Any thoughts on Baclofen? If that does not work, she said Tegretol is the next option...
I asked her about what to do in the mean time with my headaches if this does not work... "she said suffer through them, this will work" give it some time...
The other red flag is just that "this will work". Ya arsenic works too. Eventually the pain will be gone.
Other question... I did have a post that was about glaucoma and eye pressure, but now it is gone...
it talked about neck ties causing increased eye pressure and thereby increasing risk for glaucoma... sounds stupid yes, but I pulled it straight from MSN.com who was pulling from guardian.com
http://education.guardian.co.uk/higher/research/story/0%2C9865%2C1008009 %2C00.html
I was wondering if anyone thought that CH may increase risk... With the increased eye pressure that I feel...
Just wondering that and why my original post is gone..
--athos
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Prense
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Re: Trigeminal neuralgia??
« Reply #1 on: Jul 31st, 2003, 6:25pm » |
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Interesting post...I would want a second opinion. I have heard the "this will work" statement will before. Allow me to place that into context. In regards to Verapamil...Verap 360mg, (me) "ummm, doc, could I get something for when or if I get a HA because quite frankly these bastards are killing me and I am tired of going to the damn ER." (doc) "You won't get HAs anymore, these will prevent them, and I'll see you in two months."
That one statement contains more crap than a texas cattle feed lot...
Regards!
Chris
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Ueli
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Re: Trigeminal neuralgia??
« Reply #2 on: Jul 31st, 2003, 7:21pm » |
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Trigeminal Neuralgia causes intense stabbing pain, like electric shock, in areas of the 5th branch of the trigeminal nerve, mainly lower and upper jaw. One feature is that TN can be triggered by a slight external stimulus, like touch, brushing teeth, shaving, even a slight breeze.
A neuro worth her/his degree should be able to distinguish between TN and CH, alone on the duration of the attacks, seconds vs. at least 15 minutes.
If your neuro believes you suffer from TN, she should rx Carbamazepine (Tegretol) now, not later, as it is the text book primary medication for TN.
My opinion: get another neuro, one who specializes in headaches.
PFNADs
Ueli
What is Trigeminal Neuralgia?
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Gofishgriff
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Re: Trigeminal neuralgia??
« Reply #3 on: Jul 31st, 2003, 7:44pm » |
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Athos,
I agree with Ueli on getting another neuro. Preferrably one who acknowledges CH more than a passing wind. Sorry I can't offer more about meds. I'm still learning.
I remember your other post and couldn't find it either. I did see duplicate threads down below titled "so how you duuuein". Perhaps the tron gods got something mixed up here.
Andy
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athos
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Re: Trigeminal neuralgia??
« Reply #4 on: Jul 31st, 2003, 8:01pm » |
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The more I think about our vist, the more I think that just because one of her patients did have TN and she succeeded in helping her that I must fall into that boat too...
I moved into a small town 50k people is all and 2 neuro's. The other has been here a lot longer.. maybe he is better.
She also told me no ER... just be patient... I felt like asking her if I peeled off her fingernails if she would be patient....
I just think that I well head back to the Mayo in Scottsdale.. Dodick/Black are the only 2 that I think are worth anything.. That I have seen so far.
3 hr drive to go to the doc though.
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athos
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Re: Trigeminal neuralgia??
« Reply #5 on: Jul 31st, 2003, 8:03pm » |
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Quote:| Trigeminal neuralgia (TN) is not fatal, but it is universally considered to be the most painful affliction known to medical practice. |
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Quote from
http://www.tna-support.org/Definition.htm
Ya any of them had a kip 10?
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Prense
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Re: Trigeminal neuralgia??
« Reply #6 on: Jul 31st, 2003, 8:24pm » |
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Quote:| Trigeminal neuralgia (TN) is not fatal, but it is universally considered to be the most painful affliction known to medical practice. |
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Naw the difference is CH is the most painful affliction known to man/woman (gotta remain politically correct)
Chris
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| « Last Edit: Jul 31st, 2003, 8:29pm by Prense » |
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Pushkin
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Re: Trigeminal neuralgia??
« Reply #7 on: Jul 31st, 2003, 8:38pm » |
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My mother had trigeminal neuralgia - really nasty. I guess pain disorders run in my family. As others have said, any good neurologist should be able to easily distinguish between trigeminal neuralgia and CH. TN is really nasty and definitely a very painful affliction.
Anyway, suggest you get another neuro fast - it doesn't take a rocket scientist to distinguish between the two. Having spent years seeing my mother suffer with TN and living 30 years with CH, I know that they are completely different conditions, and not easily confused.
The "suffer through it" is another BIG red flag, don't walk, run to a new doctor.
Good luck and wishing you PF times.
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| « Last Edit: Jul 31st, 2003, 8:38pm by Pushkin » |
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andy
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Re: Trigeminal neuralgia??
« Reply #8 on: Aug 1st, 2003, 12:33am » |
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Athos, I have CH and had TN untill 8 years ago. Ive had CH since 1988, episodic, twice yearly for the first 3 or 4 years, long remissions. 5 years was the longest from 95 till 2000. In 92 or 93 i had wisdom teeth removed in a (i think botched surgery) Had dry socket for months (so i was told) Lots of pain meds ect...Root canals, nite guards, more meds, ect.... Then i was referred to a neurologist who immediately diagnosed me as having tic douloureaux http://dictionary.reference.com/search?q=tic%20douloureux Trigeminal Neuralgia http://dictionary.reference.com/search?q=trigeminal%20neuralgia I tell you what i think, i would rather have CH than TN. It sucks worse in my book as far as pain goes!!!I still have CH, in remission now. And i have had TN. And the pain is so totally different. Both are PURE pain but TN is in your face and Ch is in your head. My definition of TN is a shooting pain from my lips or chin up towards my eye and temple, almost like an electric shock that is triggered by anything that touches your face or even the air seems to trigger it sometimes. Each attack lasts for a few seconds up to many attacks each minute Its hard to do the most necessary things like, eating, or shaving, or just coping with this terrible disease. I tried baclofen and then flexeril (which made everything taste like a cigerette butt) then i tried tegritol, I was saved!!! Became painfree as long as i took the tegritol on a strict schedule. When i missed a dose, I suffered badly. I was on it for a year or so with much success, and lots of blood tests too. I only had 1 Cluster cycle while on the tegritol. So i stepped down while having a mild cycle. 3 or 4 weeks of kip 5 was a familiar pain. Tegritol will not do anything for for CH. And you sound like a clusterhead to me, so go get a second opinion and let us know how you are doing. Many vibes heading your way  ...............andy
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athos
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Re: Trigeminal neuralgia??
« Reply #9 on: Aug 1st, 2003, 12:57am » |
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I appreciate the input....
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ave
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Re: Trigeminal neuralgia??
« Reply #10 on: Aug 1st, 2003, 1:51am » |
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Athos, I was misdiagnosed as having TN as well. The Tegretol I took religiously for 9 months did nothing for my clusters, bu then I was out of cycle anyway...
When they started up again I knew.
This doctor however, also a woman, was fully alive to the horror of TN. She gave her home number and said I could call night or day of the pain became too much to bear before the med kicked in.
I guess there are doctors and doctors.
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catlind
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Re: Trigeminal neuralgia??
« Reply #11 on: Aug 1st, 2003, 8:14am » |
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Athos, I agree with the advice to get another opinion.
On the issue of baclofen though, I have taken it with a little bit of success in the past, and I spoke with Dr. Bigal about it at the convention. It MAY help with clusters, but there is no clinical study to go off right now. It's pure speculation at this point.
Hope that helps a little bit.
Cat
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Big Dan
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Re: Trigeminal neuralgia??
« Reply #12 on: Aug 1st, 2003, 8:17am » |
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I agree with the second opinion suggestion...
... I mean damn.... they should at least let you have a preventative...
Hope everything works out for you...
VIBES!
-Big Dan
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athos
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Re: Trigeminal neuralgia??
« Reply #13 on: Aug 1st, 2003, 10:13am » |
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baclofen/zanaflex cause hemroids
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stuey
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Re: Trigeminal neuralgia??
« Reply #14 on: Aug 1st, 2003, 12:04pm » |
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If what you have is TN get the tegretol soon. I never could have imagined anything being more painful than clusterheadaches but looks like TN has the trophy. Unreal. I went to the TN sight and it sounds very devastating. I won't ask for any more pain for myself or for you thanks. Whichever one you have Get relief of some kind soon. Anti-pain thoughts for you. Stuey
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cootie
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Re: Trigeminal neuralgia??
« Reply #15 on: Aug 1st, 2003, 12:14pm » |
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Good luck Athos....hope ya get all this figur'd out and on the correct meds without any more then ya gotta bear. Ouch that hurts Pam
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athos
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Re: Trigeminal neuralgia??
« Reply #16 on: Aug 1st, 2003, 12:41pm » |
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I really don't think that I have TN..... To many symptoms pointing toward CH
1. behind eye..
2. pain cycles every 15-45 min..
3. It is not like electric shock, it feels like there is a piar of pliars squeezing the hell out of optical nerver... Once and awhile there is pain radiating down to my teeth, but the teeth, face or jaw are not the source of the pain...
4. My left eye waters and gets red
5. I get nauseated and puke occasionly
6. Certian pizza's trigger it, heat, some chineese foods, lack of sleep, time of day. Synthetic adrenilin(isopryl), position of the stars, the fact that there are stars, re-runs of Welcome Back Kotter...
Brushing my teeth, shaving, cold breezes do not bother me.
These are all the things that I told Dr. Tin T. Win.... But I quess that it did not register to pre-occupied with her first inclination i suppose.
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andy
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Re: Trigeminal neuralgia??
« Reply #17 on: Aug 17th, 2003, 9:47am » |
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Bump ( I meant to bump this to the meds board)
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| « Last Edit: Aug 17th, 2003, 9:49am by andy » |
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