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It's back. trigeminal nerve. (Read 3835 times)

Diamond Lucidity

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It's back. trigeminal nerve.
Jan 27^th, 2013 at 3:50am

Can't they put a shot in my eyeball or tooth or face? I had to start back up on Verapamil which makes me so tired and hardly a reason to exist each day. Can they take the nerve out or kill it? I haven't been on here for a while. But it's back in full force now and I always could control it with Verapamil but now that med makes me feel horrible and when I skip it the face pain is a burning horrible pain that I would rip my tooth out gladly, or my eye I wouldn't want to lose. Neuroligist has told me this is cluster headaches and he says, "it sure gets that trigeminal nerve worked up" I can't stand the meds.

From where does it come and where does it go????????

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Diamond Lucidity CH.com Junior Offline I Love CH.com! Posts: 51 Indiana Gender:	Re: It's back. trigeminal nerve. Reply #1 - Jan 27^th, 2013 at 3:52am Could that nerve be deadened or removed surgically?
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Melissa

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Don't give up!

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Re: It's back. trigeminal nerve.
Reply #2 - Jan 27^th, 2013 at 9:21am

Diamond Lucidity wrote on Jan 27^th, 2013 at 3:52am:

Could that nerve be deadened or removed surgically?

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PROCEDURES TO BLOCK OR REMOVE FACIAL NERVES THAT CAUSE PAIN

Percutaneous Radiofrequency Retrogasserian Rhizotomy. Percutaneous radiofrequency retrogasserian rhizotomy (PRFR) generates heat to destroy pain-carrying nerve fibers in the face. Unfortunately complications are common and include numbness, weakness during chewing, changes in tearing and salivation, and facial pain. In severe, but rare, cases, complications include damage to the cornea and vision loss.

Percutaneous Retrogasserian Glycerol Rhizolysis. Percutaneous retrogasserian glycerol rhizolysis (PRGR) is a less invasive technique than PRFR and has fewer complications. It involves injections of glycerol to block the facial nerves that cause the pain. Cluster headaches usually recur.

Microvascular Decompression of the Trigeminal Nerve. Microvascular decompression frees the trigeminal nerve from any blood vessels that are pressing against it. The procedure is risky, and possible complications include nerve and blood vessel injury and spinal fluid leakage. There is reasonably good evidence that it is not effective for treatment of cluster headaches.

Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel

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Guiseppi

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Re: It's back. trigeminal nerve.
Reply #3 - Jan 27^th, 2013 at 10:32am

Ouch, sucks when beasty comes back in force.

Follow this link to the medications section of this board and read the post Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH. It's kept me off cycle for almost 3 years. Well over 70% of people who try this regimen and respond to the survey are showing positive results. Worth a look see.

JOe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: It's back. trigeminal nerve. Reply #4 - Jan 27^th, 2013 at 3:11pm Or it might be worth a switch from verapamil to another preventive, like lithium.
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Diamond Lucidity CH.com Junior Offline I Love CH.com! Posts: 51 Indiana Gender:	Re: It's back. trigeminal nerve. Reply #5 - Jan 27^th, 2013 at 4:19pm I will check out the medications here. Those procedures sound like far too much risk, as I suspected. Thanks for all the information.
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BarbaraD

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Re: It's back. trigeminal nerve.
Reply #6 - Feb 1^st, 2013 at 8:06am

Ok, listen up.. I HAD my trigeminal nerve killed back in '99 (I was really in bad shape at the time and NOTHING was working and my neuro thought it might help and the neuro surgeon gave me an 80-20 chance that it would - it didn't!).

Now I have a paralyzed muscle in my jaw, a numb left side of my face and optic nerve damage. Later that year we found a drug that WORKED to relieve the pain (topamax) and I've been fairly normal since.

So before you really go off on killing the trigeminal nerve THINK it over real carefully. I've talked to several who've had this procedure and only ONE has said it worked on them.

At the present time I'm taking Botox injections for chronic migraines and that's helping them. I'm not sure it's helping the CH much, but right now I'm in a low cycle so maybe it is.

I'm taking Zonogran now (Topamax without the side effects) and it seems to be keeping things under control.

And what Joe said about trying something else if the Verap is doing a number on you (heck, I couldn't get out of my chair when I took a really low dose of it). It's a crap shoot what works on any one of us. Mainly it's just finding the RIGHT meds for YOU. And there IS something that will help.

Keep us informed. Kiss

What don't kill ya, Makes ya stronger!

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9thNerve

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Re: It's back. trigeminal nerve.
Reply #7 - Feb 1^st, 2013 at 10:13pm

I had the nerve decompression 1 1/2years ago...still have some residual nerve pain (to be expected as my nerve was totally trashed. Good news: myelin sheath on cranial nerves DOES regenerate. Bad news: it takes a few years. Waiting...)I was lucky with no facial nerve damage BUT the migraines/CH's continue. I have tried LOTS of different meds plus herbal remedies..Topomax kinda worked but I ended up with permanent neuropathy of my fingers and feet. Tegretol helped with the nerve pain but messed with my bone marrow. Verapamil turned me into a slug and if I got my heartrate to 110-120 while exercising..BAM! CH! (plus I gained 6pounds in 2 months). Same problem with the calcium channel blocker Calan. Indocin,Gapapentin, the list goes on. I have not been able to find a preventative but thankfully Imitrex works for the migraines and CH(I get both).
I just had the privilege of meeting the infamous BATCH and his wife today who helped educate me and my husband further on managing CH's. Seems that the Trigeminal nerves and CH are related. GOAL: vasoconstrict the artery pounding on your nerve. Read on this website how to properly use O2 for aborting the CH and nerve pain.I am hopeful that this will help me overcome the nerve pain to a degree and abort the headaches.
I am also doing the D3 Regimen. Only 10 days into it but I pray that it works because I can tell you that there is no pain worse than this neuralgia from the trigeminal nerve area AND the CH on top of it> I would rather do childbirth 10x over than have 10 minutes of the pain experienced with this!(And I have had 3 kids so I do have a clue about birthing babies!)
Hang in there...this website has provided me with a lot of support the past couple of years!

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