Bonkers

Thanks for the tip.

No offense, please, Ricardo. I'm interested and anxious to learn but my eyes tend to glaze over when I read scientific jargon dominated by foot-long words I've never seen before. Maybe if you dumbed-down your posts, just a little, for people like me, more of us would follow your links. Ron

Lt2, No reaction to last night's dose. We too were hoping for a magic bullet. It may take a while. We're not giving up till Michael's taken all that we bought. Michael will be 28 in February. He's been chronic for 6-7 years. No sleep disorders. Ron

Thanks a lot, Cindy

Congratulations on your transition, Renee. You must be a very strong woman. And, you've gotta lotta balls (sorry, couldn't help myself) to follow this most difficult path out of what must have been a very difficult life before your transition. I hope together we can find some relief for your HA's. Ron

Hi Kaboom, How did you prepare the HBWR seeds for your daughter? And why 2.5 seeds instead of 2 or 3? We've got some but never used them. I think we'll give 'em a shot. Ron

:'( :'( :'( :'( Last night's dose produced no change in anything whatsoever - 'cept maybe a shrug of the shoulders along with the attendant raised palms this morning. Gonna drop down to 4, 750's tonight and continue with same for a couple of weeks. Can't hurt - as far as I can tell. The consensus of the scientific types is that since GABA doesn't, and can't, pass the blood/brain barrier, it can't do anything. My guess is that the only thing GABA's producing is that good ol' placebo effect.

Got GABA? Got GABA. Found NOW brand locally. Bought 2, 100 cap, 750mg/cap bottles @ $13.00 per. Plan on Michael taking 5 caps (3.75g) @ bedtime on empty stomach. We'll see.

Couldn't find any except as part of several expensive combos. I'll order some online for Michael.

I'm off to town to buy a supply. It doesn't appear that it can hurt, even at dosages up to 18 grams. It's inexpensive. It may help. I think it's worth a try.

BP, The methadone that both my son and I take put our testosterone levels in the toilet. The creams are really messy and shots require an expensive, biweekly Dr.'s visit. A new form recently came on the market that works like roll-on, underarm deodorant. Axiron, made by Lilly, is easy to apply, cheap ($25/month) and seems to work better than the other forms. You might mention it to 1 of your 5(?) endocrinologists. I'll bet a big boost in your T-level will make "everything" better! Ron Â

January 5th, Cindy. 12 days to go.

Interesting. It looks like you might be on to something. Please keep us informed. The longer you remain PF, the more interest you'll generate and the more people who'll be "willing to give it a shot."

Damn, dude! Who'd you piss off? Sorry, don't mean to make light of your really lousy situation. There's no way of knowing why we happen to get the hand we're dealt. It most certainly doesn't have anything to do with the kind of people we are or how we live our lives. $hit just happens. We have no choice but to do the best we can with what we've got. You had a horrible accident and one of the consequences of that accident is that you've got these awful headaches. There's no way to know from what you've told us whether or not what you have is cluster headaches or even if they can be treated in the same way as cluster headaches. What we do know is that there are many kinds of headaches, many of which can mimic cluster headaches. We also know that medical science has paid far too little attention and devoted far too few resources dealing with an invisible malady that is far too often dismissed as inconsequential. I mean, if you can't see it, if there's no blood and no bones sticking out anywhere, how bad can it be? Try going to the E.R. on a Saturday night and tell them you've got a horrible headache and it's killing you. You don't even count. Some times you can even see them snicker under their breath as you're sent to the back of the line. I hope we can help, BP. There're a whole lot of things mentioned here that might help. But, some of them might hurt and there's no way for us to know which is which. I hope you've got some sort of "Guidance Counselor" in your corner to help you decide which - if any - of the remedies we use might be beneficial. You need to find (unless you already have) a "Headache Specialist," a neurologist or pain specialist trained to recognize headache types and propose treatments. Look in the Yellow Pages. You don't mention the types of doctors treating you or if you've been given a proper diagnosis. The more you let us know, the better position we'll be in to offer suggestions.

As far as my kid's concerned, the monster that attacks him has a face and a personality. It's the manifestation of pure evil. And it's smart. It looks for - and finds - ways around or through everything we throw at it. Attempts to run away or hide strengthen it. And it always comes back. He calls it the Demon.

I'd really like to see a few migraineurs included in the BOL studies. Many more people suffer from migraine than CH. Like Michael sez, If BOL were found to be as effective for migraine as it appears to be for CH and if we could get them on board with us, our numbers would swell to where they could no longer ignore us.

Christmas eve; what an auspicious time to bust. How can you possibly miss? This could end up being the best xmas present ever! I'll keep my fingers crossed.

Hi Mojo, Welcome to ClusterBusters. In that you've just recently found this site, you might do well to watch this video of talk given by our fearless leader Bob Wold: It will give you some insight into what we're doing here and why, and how we do it. With any luck at all, you'll be in a much better place a month from now than you are today. Good luck! Ron

Does it sound like a lot of us are advising you to get an oxygen set-up? I hope so, 'cause we are. For virtually everyone here, the 1st time they got themselves hooked up to a proper oxygen delivery system, they wondered why they waited so long. High-volume oxygen hyperventilation is the very first thing that every Clusterhead should try. Everyone agree?

Everybody's weird, Renee. My mom used to say: "Everyone's a little queer, save me and thee. And sometimes I'm not so sure about thee." I think you'll find that you fit in here pretty well. You're not the 1st CH'er I've heard of that uses distractive pain when they get hit. Just the 1st time I've heard of 'needle play.' Whatever works, dude. Ron

And this very unorthodox yet instantly effective abortive is what, exactly?

Amazing stuff, Brew. Thanks for sharing.

Anything specifically? Something you might be able to post a pic of?

Your wife's artwork is beautiful, Brew. Have your CH's ever been either a part of, or an inspiration for, anything she's done? Ron

So cool. Thanks a bunch Bob. You too, Kaboom. We all appreciate and applaud the great work you're doing. You too, Kaboom. There's a lot of info re the conference at the link Bobb provided in the 1st post.