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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Trigeminal nerve
        
(Message started by: ferbio36 on Sep 13^th, 2004, 5:00pm)

Title: Trigeminal nerve
Post by ferbio36 on Sep 13^th, 2004, 5:00pm

I have been told that the reason we get clusters is that there is,by histamine,or the hypothalamus,that this is why our brain swells an puts pressure on the trigeminal
nerve.This nerve is the nerve that controls the optical,nasal nerve,and the nerve that goes towards the ear.This makes sense since this is where we all feel the pain.If you can numb the nerve endings that affects these places,you can ease the pain.A leading neurologist in Colorado told me this is why we get clusters.Anyone ever hear of this?.She also said that there is a doctor in New Mexico that does a surgery that trims the brain around the trigeminal nerve so that when it swells,there is no pressure on this nerve.Would anyone undergo brain surgery to get rid of these clusters?

Title: Re: Trigeminal nerve
Post by Bob_Johnson on Sep 13^th, 2004, 5:06pm

Various types of surgery like this have been tried with lousy outcomes, for the most part. When you read messages here long enough you'll see a general rejection of this approach.

The nerve, however, is complex and interesting. It's activation during a cluster accounts for the pain in eye, temple, and jaw, as well as the copious nasal drainage which many folks experience.

Title: Re: Trigeminal nerve
Post by thomas on Sep 13^th, 2004, 5:07pm

I wouldn't consider surgeryuntil I had exhausted all other treatment methods, with no success. Surgery should be a LAST RESORT!

Title: Re: Trigeminal nerve
Post by Tom K on Sep 13^th, 2004, 5:14pm

After all the drinkin' and [smiley=smokin.gif] that I've done in the past, I don't think I want any more of my brain to be gone. I need all the brain cells I have left cuz I can't even think of the word I was going to put in here....sheesh...I hate CH!! [smiley=huh.gif]

Title: Re: Trigeminal nerve
Post by nani on Sep 13^th, 2004, 10:31pm

I recently exchanged e-mails with a local CH sufferer who had been a chronic with pain on his left side for years. He said he had surgery on his trigeminal nerve and was numb on the left side of his face. He was pain free for a couple of years, I think, and recently started getting chronic HAs on his right side. :'( Poor guy
I don't know how seriously I'd consider surgery. I've already had major brain surgery for a burst aneurysm and it was a bitch to recover from.

Title: Re: Trigeminal nerve
Post by unsolved1 on Sep 13^th, 2004, 10:48pm

There is NO cure
There is NO cure
There is NO cure
There is NO cure
There is NO cure
There is NO cure
There is NO cure

If that 'leading neurologist in Colorado' knows about clusters, than he knows There is NO cure.

Besides that, 'trimming' your brain would be a serious (and possibly life-threatening) surgery. Chances of hemoraging or other complications including paralysis and/or brain damage should be considered as a definate possibility.

Unsolved

Title: Re: Trigeminal nerve
Post by ferbio36 on Sep 14^th, 2004, 8:51am

Thanks for the advice all of you.screw brain surgery.I'll stick to percocet and beer :D

Title: Re: Trigeminal nerve
Post by jmorgan52 on Sep 14^th, 2004, 9:38am

I don't belive "the brain swells" to put pressure on the trigeminal nerve. What I understand happens is that the BLOOD VESSELS expand and put pressure on the nerve. Imitrex causes the blood vessels to constrict and the pressure on the nerve lets up and the pain goes away (hopefully).

This is the opposite effect of Viagra which makes the blood vessels expand to create more blood flow. Or maybe Viagra just makes the brain shrink ;;D

John

Title: Re: Trigeminal nerve
Post by JDH on Sep 14^th, 2004, 10:39am

on 09/14/04 at 08:51:37, ferbio36 wrote:

Thanks for the advice all of you.screw brain surgery.I'll stick to percocet and beer :D

Yikes :o
That might just be THE worst thing you can do.

Jim

Title: Re: Trigeminal nerve
Post by BobG on Sep 14^th, 2004, 4:19pm

on 09/14/04 at 08:51:37, ferbio36 wrote:

Thanks for the advice all of you.screw brain surgery.I'll stick to percocet and beer :D

Percocet and beer?
Do you have cluster headaches?

Title: Re: Trigeminal nerve
Post by pubgirl on Sep 14^th, 2004, 4:51pm

Trimming your brain :o :o :o

I thought I'd heard it all...........

Wendy

Title: Re: Trigeminal nerve
Post by JDH on Sep 15^th, 2004, 12:10am

on 09/14/04 at 16:51:40, pubgirl wrote:

Trimming your brain :o :o :o

I thought I'd heard it all...........

Wendy

bwaaaa!!! I missed that the first time Wendy.
"Ummm...could I just get a little taken off the sides?" ;;D

Jim

Title: Re: Trigeminal nerve
Post by don on Sep 15^th, 2004, 7:17am

Quote:

I'll stick to percocet and beer

Who diagnosed you with clusters? The same Doc who wants to slice into your brain?

Title: Re: Trigeminal nerve
Post by ferbio36 on Sep 19^th, 2004, 1:33am

I have had clusters for 20 years.Many doc's have diagnosed me,suggested cures,given me axert,maxalt,prednisone,imitrix,midrin,ergotomines,lexapro,frova,topamax,antihistamines,percocet,vicodin.Name it,I have had it.Been to doc's,neurologists,surgeons.Again,name it.No cure,but if you take high powered pain meds,and have a good relationship with your workmates,you can get through it.

Title: Re: Trigeminal nerve
Post by don on Sep 19^th, 2004, 9:36am

Quote:

and have a good relationship with your workmates

Yup. Thats always worked for me. First sign of an attack I go to work and hang out. Attack gone.

Ferbio read the label on your med bottle. It doesn't sat "high powered pain meds" its "high powered brain meds"

So how is the ceramic group going?

Title: Re: Trigeminal nerve
Post by Kris_in_SJ on Sep 19^th, 2004, 8:29pm

Don - you are simply WAY too bad! (love ya anyway)

Welcome Ferbio. Unsolved said it best - "There is no cure."

The best we clusterheads can hope for right now (until the cure comes along) is to control the length and intensity of our attacks, and abort the HA whenever possible.

It's a hellish syndrome to live with, but brain surgery sure isn't the answer. Either is beer and Percocet. For most people both alcohol and narcotics are triggers for worse headaches.

Have you tried O2? It's a godsend for many here in aborting the beast.

Keep posting - it's a great group, with a wealth of knowledge. We'll be here when you need us.

Hugs,

Kris

Title: Re: Trigeminal nerve
Post by EmpressJMB on Sep 22^nd, 2004, 10:55am

I would never (never say never?) have brain surgery to relieve my ch. What if the surgeon slipped?! Woops! Brain Dead. No more headaches.