Leaderboard

Neurologists have extensive knowledge of these structures. I find it hard to believe that you made such an ignorant statement. I have a friend who came to your clinic several years ago for treatment. She did not have a little numbness. She had to take all food thru a straw for months following your procedure. You did not or could not correct it. I am not at all sure that you respond to failed treatments or acknowledge the misery some of your patients have had following their visit to your clinic. None of which qualify you to treat this condition. But all of which study the Trigeminal Nerve to some extent. Bandaids are not a 'cure' for disease. They just prevent pain by covering the area and protecting it for a short term. You are handing out expensive 'bandaids' and sometimes put them in the wrong location to boot. I would like to see a paper with about 5 years of follow-up on your patients. That would eliminate some of your 'many' successes. And more sanitary working conditions that do not leave patients with infections are definitely needed at your clinic. That is unconscionable. For any Physician. As a side note, I had an attack while awaiting surgery. The Physician had the pre-surgery injection given early and my attack completely vanished. I did not walk out and say that hernia surgery cured my CH. I said that the shot killed a hit. If this method is so successful and your concern for our pain so high, why have you not trained other doctors in your procedure? Perhaps they are not beating a path to your door. For good reason?

Hi JimG, Sounds like 17 years in, your CH had a pretty established pattern of behavior. The weird thing is, it turns out it's common to be hit with a pattern shift you never would have expected, even after umpteen years of predictability. One of the most common shifts is the lengthening cycles BTW, so It's probably not worth worrying about chronic for another few months at least. Lotsa headbangers are convinced the usage of triptans can cause cycles to lengthen. I've been episodic for going on 37 years, so I had 12 years or so of CH joy before triptans hit the market in the US, and what I found was my cycles kept lengthening and lengthening before I ever tried a triptan. I had been on some heavy cocktails of other prescriptions though. Here's hoping you'll be 12-ish weeks and done this time, with a sudden cessation, or at least you'll see it tapering off soon, which I figure is a likely scenario. I'll officially place a bet on that right now.

Anita....sounds like ya got a plan...we love hearing that! Re salmon...I like my Omega 3s a bit more natural so I travel with canned salmon. Admittedly a bit odd. It was the Reno airport...and they kept calling agents over to look....eventually 4 screeners and a supervisor. It was hilarious but I couldn't laugh... because then they would know I'm as crazy as I look. They grilled me good until I finally said..."ok...get a can opener and I'll eat it right now!" That worked and they let me go.............................btw Icy Point brand by Ocean Beauty Sfds...excellent quality and a good price...I get it at Bartell's.

Possibly the reason he's getting hit more right now is because on the 20th, we have the Solstice coming up. Most of us get hit WAY more during this time period. Things tend to calm WAY down afterwards. My neurologist said it has something to do with hormones... I know my hits get a crap ton WORSE every time the solstice or equinoxes swing around, and it's not just because my botox wears off! Also, I'm not sure if I'm reading THIS right but... if I am, I think what Verapamil does is it stops you from making excess CGRP, or reacting to it. https://www.ncbi.nlm.nih.gov/pubmed/8523457 Which may be part of what causes our headaches. Which means, it kind of keeps you from getting worse? But it may not make you better.... So Verap may hold your headaches in place and stop them from progressing, but it's not going to fix the problem. So if you're episodic, you take it until the attacks go poof, and you're over your cycle. If you're chronic, you take it until your body builds up a tolerance and says 'Fuck this'. At least I'm assuming that's what happens... But I could be COMPLETELY wrong.... I've been known to be. (Ignore all of this, I read it wrooooong I think.) Back to your hubby.... I second the suggestion of RC seeds, they help SO MUCH. I didn't get relief from oxygen unless I got on it RIGHT away...and currently I don't have it. But RC seeds helped a crap ton. I'm a chronic. I started out chronic. Good luck! <3 Everyone else gave some super advice here!

HI Anita, and gang. I've always been chronic, and to be honest, being episodic used to scare me. Sort of along the lines of what Jon said above. At least when I was getting hit all the time, my life was prepared for it. I always said, still do actually, life is what happens between headaches. Although these days, it's mostly chronic migraines and chronic daily headaches. Cluster Attacks, not so much any more. In 2011 I was getting up to 5 vicious attacks a day, every 2-3 days for an entire year. That was about my worst year with Clusters since they started in Jan 2007 (add on top of that my migraines and daily headaches, of course). I had gone through, and maxed out every drug the doctors could give me over the years, and they just got worse and worse and worse. If I had 3 days attack free, I was amazed. And when they hit, it was HELL on Steroids! Nov 2011 I had my calendar in front of me, and was selecting a date on which to leave planet Earth. I had decided to give myself one more year to find a solution, and then good bye. I had been told about this board in 2010, and read through some of the pages. But to be honest, LSD scared me. I've never done anything harder than pot, and that was when I was very young. As a result, I had always held this option as a last resort. That day when I was picking a date to die, I knew I had reached my last resort. So, I joined the forum, and was instantly greeted by the warmest and nicest people on the planet. You've met them already. I began coming off of Topomax (Topiramate) as quickly as possible, to quickly if I'm honest, and I spent all my free time reading these pages. By the time I was clear of the doctor prescribed "waste of time", I had a small amount of shrooms and some RC Seeds. After my very first dose, I knew I was onto a solution. My next attack after that dose was COMPLETELY different than anything I had ever experienced before. I knew the routine, I knew the schedule. But this attack after busting, it didn't follow the schedule, or the routine. My routine was: Sudden attack, like being hit in the face with a baseball bat. 30-60 minutes of extreme pain, usually sitting on my bed rocking back and forth with snot dripping down my face, followed by 20-30 minutes of uncontrollable tears and shaking, as if someone where rattling my bones. But, after my first bust, there was NO post traumatic attack. No crying, no shaking. I had a short, 20 minute attack or so, and then got up and dusted it off and got on with things like it was no big deal. The attack was sharper, and 'clearer' than any other. It was like crisp, cold, crystal clear water instead of the heavy, oppressive attacks I normally got. It took me the better part of a year of busting on and off to make a huge difference, but a difference it made. Year 2, I only busted occasionally, a few weeks at a time 3-4 times a year. Two years ago I started micro-dosing, which is amazing! It involves taking a small dose (0.20 grams or less) every day with no tripping affect. But, I don't even do that very often now. In fact, all my busting material is going to my best friend who has ALS, she needs it more than me. Do I still get attacks? Yes, I had one yesterday in fact. It lasted about 30 seconds. Took my breath away and brought a few tears to my eyes, but that was it. I get 1 - 2 attacks a month now, and consider anything over 15 minutes a shockingly long attack! In fact, 5 minutes is unusual. I'm not as scared of being episodic now as I once was, simply because my attacks are not what they once were. I'd be concerned though that if they stopped for a year or two, they might come back with a vengeance. But I have a solution now. I know how to stop them, and I have no plans of leaving this planet anytime soon. MG