Bonkers

Where there's a will...

Many thanks to Dr. J for taking the time to respond. We know you're a busy guy and we're most appreciative of all you do for us. It would be nice though, if there were several of you - and all of you were super rich! Ron

Hi, Renee. An old term, from the name of a mid-last-century soft drink: moxie - applies to you in spades. You have my admiration and hope for a happy life.

I bet you won't let them give you that shit again! Arde's right - nitro's the best way to induce a CH. It would of been nice if you'd known that beforehand.

Thanks, Jerry. It just really pisses me off that it costs so many millions of dollars and so much time to get this drug into the hands of those who need it so badly. I wonder about that too. Maybe he had enough of his own resources to have enough made to cure his own CH and then took a hike. Didn't seem like that kind of fellow though, at least not to me. Who knows. So, why can't we get a hold of some offshore chemist or whoever to make a bunch of the stuff for us? What he was trying to do made sense to me. My kid can't wait 5-10 years for some VC to drain his millions out of investing in BOL before he releases it to the public. There's no question at all in my mind that Michael will be dead within two years unless we come up with something to release him from this horror. Sorry. I'm really phucking angry! Ron

I was prescribed Sansert for pain many years ago. I still remember it. Took one pill and flushed the rest. One of the worst experiences of my life. Like the Jeebs sez, Don't touch that shit!

Thank you, Sir! At least we know he's out there somewhere, ya know, doin' stuff. Wish I had a few billionaires in my back pocket. As far as I can tell, they're only making one drug, though. Wtf do they need all these 'major investors' for? What ever happened to starting a business 'on a shoestring?' Jerry?

Don't forget, Tuesday's Valentine's Day.:-* If you do, you won't be getting any of that 'special pressure' from me.

I thought you liked that pressure - that 'special' pressure. ;D ;D

If you get old enough, everything will go away.

The non-rebreather mask isn't a suggestion - it's essential. You can get one here: http://www.clusterheadaches.com/khxc/index.php?app=ccp0&ns=prodshow&ref=o2ptimask

Kymera, I wouldn't let them do anything at all invasive until you've exhausted other possibilities. Dr. Peter Goadsby's had lots of experience with both of the following. I believe by "Deep Shock Therapy," you're referring to his 'Surgical approaches.' Greater occipital nerve injection: Injection of methylprednisolone (80 mg) with lidocaine into the area around the greater occipital nerve ipsilateral to the site of attack may result in remissions lasting from 5 to 73 days (RCT). This approach can be very helpful in shorter bouts and to provide a general reduction in burden in more prolonged bouts and in chronic CH. Surgical approaches: Modern surgical approaches to CH are dominated by deep brain stimulation in the region of the posterior hypothalamic grey matter and occipital nerve stimulation. In expert hands the results are excellent and appropriate referrals to expert centers are encouraged. There is no clear place for destructive procedures, such a trigeminal ganglion thermocoagulation or trigeminal sensory root section. I hope this helps. Ron

The more people that try these things, the more data we get. The early info re RC seeds was I think cautiously conservative. Most now would agree that 25-35 seeds is a good starting point with perhaps 100-125 being the max effective dose.

No sweat.

There's gotta be someone here who knows Dr. Halpern personally and could get some current info for us. Hello... anybody out there?

Good to have you on board, Kymera. Feel free to ask questions about anything at all. The ClusterBuster Files (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files) should answer most of them. Ron

Awesome way to spend your lottery winnings. I wish you luck!

Dear U.S. Government, Please!! We're begging here. Give us BOL now! Sincerely, All cluster headache sufferers

Please let us help you, Mrsgrneyedldy. There are many here, including my son, who are suffering just like you. Please stick around. Read and ask questions. I promise that you'll find things here that will help. Just give us a few weeks. You'll be so glad you did. I promise. Ron

Many, many more than are not.

For me, the 'Alerts' tool is at the bottom of the page under 'Specialized Search.' Thanks, Kyle.

Thanks for the correction, Renee. And thanks to those who have responded so far. When we're done, I'm gonna try to put all the info together and write some sort of (hopefully) meaningful report. Ron

Hi Renee, Thanks for the post. When you've got a minute, I've got a couple of questions: 6. Did you quit using Topiramate after 18 months because it quit working for you or because you found something better? 7. Do you alternate seeds and shrooms or combine them? What dosage? How long have you been using them? Have they lost effectiveness over time? 8. Good idea. It's now #8. I think you're chronic if you don't have breaks of 2 weeks or longer between attacks. Maybe you've been chronic from the beginning. RonÂ

Please post only if you are chronic. 1. Age when CH began? 2. Age when became chronic? 3. Years chronic? 4. Does the number and/or intensity of hits (Kip level) vary throughout the day/week/month/year? 5. Do you have a continuous 'background' headache (migraine?)? 6. Please list effective medications and length of time effective. 7. What are you using now? 8. How frequent are your chronic attacks? 9. Any other questions that would be helpful? Thanks, Ron

Hi Scott, Good on ya for taking care of your brother. I don't know what, if any, of the things discussed here would be helpful for him, but since he doesn't seem to be getting much help from his doctors, I don't see how it could hurt to give some of them a try. RC seeds are cheap, safe and readily available. Read enough about them in the ClusteBuster Files so you know what you're doing and give 'em a shot. You got nuthin' to lose and they just might help. Same with the D3 regimen; it can't hurt and could help. And see what you can do to get your brother a referral to a headache specialist. You don't say where you live but take a look here: http://www.ouch-us.org/chgeneral/doctors.htm and see if you can find someone near you. Mention Indomethacin to his doctor. If it makes his headache go away, he doesn't have cluster headaches. The first, most important, thing is to get an accurate diagnosis. I wish you luck. Ron