I have been a ch suffer for the last 23 years and I have had enough of these things. My cycles have bounced around for the last 5 years. Going from episodic to chronic and then back and then nothing for a year. Very strange to me. However, this is not my problem! I have found out that there is a surgery where the doctor goes in and cut the * trignal (*spelling sorry) nerve. But, I can't seem to find any doctors that will do this procedure. Please can anyone help me on this. I do understand what will happen when this nerve is cut and I'm more than willing to deal with it.

Thank you
Screaming for peace, Seth. :'(

I'd strongly encourage you to explore alternatives to this surgery. There's a reason few surgeons will even attempt it, as the side effects are significant, there's a chance it'll switch sides anyways, you'll have the other nerve cut, then nothing in your face, jaw etc. will function. It's a nice thought that a quick and easy surgery will "snip" the pain and life will go on as usual only no pain. The reality is not so pleasant.

Let us know what you've tried, what has and hasn't worked, there are so many recent developments, HOW we use oxygen, HOW we administer verapamil, progress on the alternative treatments with mushrooms, RC seeds, these can be explored on our sister site    Clusterbusters.com

Your treatment decisions are some of the most personal, intimate decisions we make as it's OUR body we're dealing with. Please go into this with eyes wide open and a complete education as to potential side effects, and all your alternatives.

Wishing you peace and some pain free time soon.

Joe

Oh, laddy.

I have tried so many things, that I should be a drug store and or a holistic healer. I have a 30,000 cubic O2 tank here at home, I carry a e-tank where ever I go.  I have had my headaches since I was 11, and are very much in the understanding of what the cost of having this done.

There are different branches of that nerve that go throughout our faces. The ones that I wish they would snip, would be the ones near the top of the skull and around the eye. The rest of it I can deal with just fine.

I do thank you for your concern and know of clusterbusters.

Verapamil and lithium, calcium blockers, anti-seizure, blood thinners, imitrex, mushrooms, acid, pot, teas, water, red bulls, painkillers (way too many). Injections, nasal sprays the list goes on forever. I have even gone half way around the world looking for peace....... There is even a procedure where they implant a device to send a electrical impulse to stimulate the area. The surgery that I would like has more complication than the loss of feeling in the face or control. My wife and I have made this decision together . And pray everyday that I can find a doc that is willing to take a chance on this.

Obagee wrote on Nov 13^th, 2011 at 1:45am:

Oh, laddy. I have tried so many things, that I should be a drug store and or a holistic healer. I have a 30,000 cubic O2 tank here at home, I carry a e-tank where ever I go.  I have had my headaches since I was 11, and are very much in the understanding of what the cost of having this done. There are different branches of that nerve that go throughout our faces. The ones that I wish they would snip, would be the ones near the top of the skull and around the eye. The rest of it I can deal with just fine. I do thank you for your concern and know of clusterbusters. Verapamil and lithium, calcium blockers, anti-seizure, blood thinners, imitrex, mushrooms, acid, pot, teas, water, red bulls, painkillers (way too many). Injections, nasal sprays the list goes on forever. I have even gone half way around the world looking for peace....... There is even a procedure where they implant a device to send a electrical impulse to stimulate the area. The surgery that I would like has more complication than the loss of feeling in the face or control. My wife and I have made this decision together . And pray everyday that I can find a doc that is willing to take a chance on this.

That would be a really big tank.  An H tank holds 244 cubic ft.

         Potter

I'm with Joe. Track record on these approaches are uneven. If you wish to explore, strongly suggest getting seveal consults with docs who have used these techniques since outcome studies say that both experience and skill are critical to outcome.

Thanks potter, I didn't see that I put to many 0's, and ya.... I have a big tank at home, my saving grace.

Sounds to me as though your mind is made up.

Good luck.

I don't know if your mind is made up or not, but I do understand what happens when you hit the wall as hard as you have. And I have been where you are. When I was in your shoes, I spoke with my neuro about getting a referral to Johns Hopkins where they have some unique approaches to CHs. She recommended I visit the research based John Graham Headache Clinic here in Boston, which is associated with Harvard Medical. I didn't even know it existed. I did, and have been under the clinic's cheif neuro for over a year. Mainly, his list of resources (including such surgeons as you request) was extensive but he was aggressive in getting these under control, and largely has succeeded. I am now several paces away from the cliff edge of surgical intervention. That's what I would recommend for you. Hit one of the biggies in your area. And let us know how you get on. Blessings, and prayers for pain relief. lance

PLEASE, research and try Prolotherapy. My brother and I have both been Chronic for over 11 years. I've tried EVERYTHING I and my Doctors could think of. I went through the D.B.S. ( Deep Brain Stimulation ) in 2005. That didn't help, I underwent the X-Knife procedure ( Laser Radiation ). That just numbed the roof of my mouth and the left side of my nose. Look at my Post under Medications & Treatments. I started this Therapy on Fri. am at 10am. As of today I have had 2 ( TWO ) attacks ( Both were gone with in 5 min at 12li of O2 ). On an average day I get a min. of 3 & up to 5. I can't say it will work for you, I underwent Brain Surgery to do ANYTHING to stop this BEAST! PLEASE TRY IT, I know the life style of this Beast & it's NO way to live!