TakinitEZ

That's actually not news about slow release verap not working, but something I hadn't considered in a while. Here's some info on Frova: http://clusterheadacheinfo.wdfiles.com/local--files/file:productmonograph-frova-endo/ProductMonograph-Frova_ENDO.pdf -T

Shahooty, I was on Depakote for a short time. It didn't work and once I got up to therapeutic level in my blood stream, some sort of switch went on that made me voraciously hungry, constantly. Not good. Sounds like you're on a great path now.-T

I have a different opinion regarding the emphasis of BOL as a miracle drug. We don't really know that. There are positive results from a very small study and a private company that is pursuing it. To me that doesn't hold miracle drug credibility. If this is seen as a commercial for Entheogen, I think we've really missed an opportunity. To me, the critical messages are: - current medications don't really work and in fact can be harmful - this group has found an effective mechanism of relief in hallucinogens - the method of administration is sub-hallucinogenic - there is proven evidence that these drugs are safe - there is a potential drug candidate, called BOL-48 -Chris

Hey Jon, I looked for that doc and can't recall exactly what I was searching on at the time. I suspect I was pretty deep into the search results. I found one doc from Australia but that's not the one. Sorry about that. -T

No, in the US. I have been there though and the food was fantastic. So was the weather by the way.

You guys are brave souls. I'm even uncomfortable with this message thread be public info. Dan, I think they picked the right person. You know the issues like the back of your hand and you're open, honest, and most importantly, likable. Not that I like you, but, well, just sayin. This is a really important event! -Chris

By the way, I'm part greek and would love a piece of that moussaka. -Chris

I'm with Jeff. No need to embarrass the fed in the process and get them interested. -Chris

I think one of the best mediums available for exposure is online video. A couple of well placed and well constructed videos, with support from respected physicians, would go a long way to building awareness. I believe that even if my doctor is wowed by the results achieved here, it is highly unlikely that he would take the case forward to his peers and superiors that they, as a group, need to initiate a movement toward legalization or even latent support. Laws are changed by constituent pressure on legislators, or opportunity. We can kiss the "opportunity" goodbye because there is no economic advantage in taking this forward. The only hope for such a case must stem from compassion. -Chris

Hey Jon, In my search travels I ran across a military guideline for treatment of CH. Let me see if I can find it. -T

Ting, That is a wonderful smile on your new picture. It's evidence that you are truly doing very well. I don't mean just with the headaches, but overall. If anyone deserves some pain free time it's you. You've had some very positive things happen for you recently, related to talking more openly about your CH. The party, old friends, very positive feedback. And you ate some really bad for you, feel really good food! Aged brie... awesome. It sounds like you are taking a courageous new direction and it's really working well. I'm sure most of us can relate to the friends thing. I do think you find out who your true friends really are. I have one friend who comes to see me nearly every week. No expectations. If I feel up to it, we'll go do something, if not, we'll hang out, or if I'm hurting, he'll just make some food or something. Others stop by occasionally or call to see how I'm doing, and they've done a little research on their own or at least read my website. But most, I haven't heard from at all. If I run into them, they'll say "how are your migraines" or something like that. I say "fine". I guess I've gone through sort of a sorting process. It's very uplifting to hear the joy in your posts and to know that it may be possible to break free from this. Thank you. -Chris

Hey Bob, Best wishes! -Chris

Oh man, that sounds painful Bejeeber.

stick it stick it stick it stick it stick it stick it stick it stick it stick it

Hi Stevil, I have constant pain on the same side as my cluster attacks. The ongoing HA actually drags me down at times worse than the attacks only because it doesn't go away. It runs anywhere from a 1-2 to a 5-6 and it seems to change in cycles of a few days at a time. Right now I happen to be in an intense cycle for the last week or so. The biggest problem is that I don't really have a good remedy for it yet. OTC meds don't work. I do take Toradol injections for it, but don't like to and don't get much benefit. Oxygen is not effective for this HA. My neuro at the headache center simply calls it a baseline headache and says it's not that unusual for chronic CH. I also have chronic migraine, but that's a very different headache. -T

Poli, That's a great discussion board. I hit "translate" to English and it actually did a pretty good job so I was able to read up. It's amazing that so much is being relayed regionally in local language. Fantastic! -T

I think you really captured the spirit of it, Bob. Nice post. -T

I'll throw another twist in there... I haven't had so much as a bad cold since my CH started. -T

Hey there KC. Welcome. -T

As long as they're respectful and courteous while they're here, well, they're being good patients. I'm the same with my doc...love him when I need him, don't hang around when I don't. -T

That's a beautiful thing. -T

Man, $540 out of pocket is tough. It is a lifesaver at times, if you look at it from that perspective. Good luck getting it back...should be reimbursed. -T

Pixie-elf, Very interesting post. I'm sorry that you landed where you did. Why the methadone? What was that intended to do for you? -T

The real crime would be enacting such a rediculous ban. -T

Holly, Have you seen this page at the OUCH US site? http://www.ouch-us.org/chgeneral/dealwithinsur.htm -T