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rcw134 07-24-2007 08:07 PM

bi-laterial trigeminal neuralgia - info PLEASE
 
Greetings -
I found this site in Neurology Now magazine - and today was one of the worst pain days that I've had in years. Well over a 10! I've had cluster and migraine headaches for the past 30 years. In '97 while at the diamond Headache clinic, in-patient treatment, I was diagnosed with both of the headaches. In 2003 they became chronic and since Feb of this year I've been living with them daily. I've been to 3 neurologists since February and finally hit one that did an MRI with dye (had one earlier with out dye and that neurologists said there was nothing there) - on 07-11-07 I was told that I had bi-lateral trigeminal neuralgia and there were three operations that could help. It was explained to me that there were blood vessels on top of the trigeminal nerves (prior to where they branched off) which was causing the pain or the headaches which were causing the pain - still don't understand that part - I was in shock at that time - and an appointment was set up with a surgeon, to discuss what could be done.
What options do I have? Who can one trust in the medical field? Can meds elevate the pain? Any caretakers that can share with my wife Jane, she's tired of the living like this!!

Alffe 07-24-2007 08:50 PM

Welcome to NeuroTalk rcw...I'm glad you found us.

http://neurotalk.psychcentral.com/forumdisplay.php?f=26

I think you'll find much support there. :)

Corkybird 07-24-2007 09:51 PM

Warm Welcome from a fellow TN patient
 
Greetings, I have had atypical trigeminal neuralgia for 10 yrs. A gal in the local chapter support group for the National TN association suffers from bilateral, but hers were at different times (3 yrs apart). There are many who have had success with surgeries. Good Luck to you and remember.."You are not alone" ...as the front cover of the TN book's subtitle says.

Corkybird:grouphug:

rcw134 07-24-2007 10:21 PM

Remaining Hopeful
 
Alffe - in response to your post - what I was looking for and would appreciate is answers - not a link to the sites you suggested. I'm retired from 27 years of law enforcement - not only have I referred those who needed help but have investigated deaths of those who it was too late to get help to. Your concern I'm sure was sincere, and I appreciate the the thought -
In reading some of the other posts that have offered help, I've already learned about the available books and sites that contain information that I have to date not obtained -
Please - those who read my post - send your information and prayers my and my wifes way - it is frustrating to live so many years with the thought of having cluster headaches and now at 58 learn that it is TN, and I have to start over and educate myself about this disorder. Today the pain I had was the worst head pain I've had in years.

Darlene 07-24-2007 11:49 PM

rcw, hello and welcome to NeuroTalk. You will find a great number of people here to help you out. Here we love to show comfort for everyone here.

Looking forward to seeing you in any of the forum.

Darlene
:hug:

Curious 07-25-2007 12:47 AM

Quote:

Originally Posted by rcw134 (Post 128120)
Alffe - in response to your post - what I was looking for and would appreciate is answers - not a link to the sites you suggested. I'm retired from 27 years of law enforcement - not only have I referred those who needed help but have investigated deaths of those who it was too late to get help to. Your concern I'm sure was sincere, and I appreciate the the thought -
In reading some of the other posts that have offered help, I've already learned about the available books and sites that contain information that I have to date not obtained -
Please - those who read my post - send your information and prayers my and my wifes way - it is frustrating to live so many years with the thought of having cluster headaches and now at 58 learn that it is TN, and I have to start over and educate myself about this disorder. Today the pain I had was the worst head pain I've had in years.

welcome to neurotalk rcw.

the link that alffe gave you was to make it easier for you to find our tn forum. right here in neurotalk. that would be the best place for you to find answers and support from from people who have tn. :)


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