Bejeeber

So the head of Neurology is unaware of the existence of chronic CH and refuses to acknowledge it as a condition.... Sadly unsurprising.Â

Hey Ting, Sounds like nobody even had to use the bucket at cross fit. SWEEE-eee-EET! ;D Is this one of the impossible to upload pics you were talking about? ;D You do look like you're having a fun day! [smiley=thumbsup.gif] That tall dude in the middle needs to roll down his pants leg though.Â

And hey I just noticed that at least with this online version of the interview, we get to post replies, and get our $.02 about O2 and stuff in there. 8-)

Hey Jerry - In my view the statement is almost accurate, as it sounds like he's talking about a high dose burst of prednisone, which will more often than not completely stop the attacks. Of course it doesn't really stop the cycle though, since as he goes on to say, as soon as you taper down from the unsustainable high dose of prednisone, the hits likely come right back (and boy they often come back with a vengeance! ). So yeah, I too am disappointed in the omission of O2, etc., and the dismissal of natural treatments, since a natural treatment (mushrooms) is working better for me than anything else ever did! Also, one thing I try to keep in mind when reading interviews - but don't always succeed - is that IMO at least, *medical doctor* isn't the only profession that is rife with laxidasical, negligent slackers. Another prominent one is *journalist*. Misquotes in interviews have historically been the rule rather than the exception.Â

Hey Brad, Here's something I and some others have found about O2 and imitrex: I know I can safely hop on the O2 tank first without going for an imitrex injection, because if for whatever reason the O2 won't perform the abort alone, it keeps the attack at bay enough that when I throw in the towel I can jump to the imitrex and still abort with an injection as a last resort. That said, nothing under 45 (!) LPM O2 will abort an attack for me when in high cycle.

Ha! ;D So it turns out that one would have a good chance of sending their CH into remission by visiting a UK PMD, and practically zero chance by visiting a US PMD (primary medical doctor).Â

Hey Gord, Good to have ya here clusterbro! 8-) Sounds like you could use a serious backup CH fighter or 3 in your arsenal, and I'm agreeing with CHfather that high flow O2 would be something really good to be acquiring right around now. IMO you oughta try rockin' a demand valve system. 8-)

Yes. My CH has always been on the right side and I feel a real connection with that little varmint. ;D

OK now the brainstormin's kickin' in and Kaboom just took it to the next level, as is her custom. 8-)  ;D

And here I always thought PMD stood for Pickled Mambo Donuts! I guess Primary Medical Doctor it must be then - good snag Jerry. 8-) And I can't think of anything better than Jerry's vote for doctor X for both referring and primary doctor. I sure hope they can actually make good on the UCSF Headache Center Practice Manager's offer (that we have in writing!) to "do our best to accommodate an appointment expeditiously once records are received". Hoping that in this case "expeditiously" means expedite.Â

I'd say since you like dogs you could get one like this, but I guess these are just for girls, darnit:

Ooh good catch there Brew - I had plum forgot about that. :-?

Imitrex is known to block the effects of RC seeds and the like. You may be able to get away with staying on the verap. A mid size can or shot so that you're getting around 100 mg caffeine. Chug it as fast as possible at onset of CH attack. I don't think cold or warm matters. Some CH'ers believe that the carbonation in the cans helps with quick absorption. I dunno about that - I think downing a shot in one second makes for pretty quick absorption, and helps you get to your freezing air breathing/welding O2 breathing or whatever else ya got faster. [Edit: just saw CHfather's post that went up while I was typing mine. You're the fastest gun this time CHF, but I'll get ya next time - meet me at high noon! . Anyhoo Crystal, I'm agreed with CHF, and will just add that some CH'ers even take the melatonin up to the 18-21 mg range (I don't actually know how safe that is though) to get night relief.]

Un-fecking-believably cool!! Glad to hear you're leaving the max amount of trees standing. 8-)

Unfortunately you would have to be detoxed off the drugs for 5 days in order for mushrooms to work effectively. :'( You and I, as episodic CH'ers are in a different place here than the chronics when it comes to deciding whether to detox and bust, and with only 2 weeks expected to be left of your cycle, well I would probably save the mushrooms (or RC seeds, more about that later) for prevention of your next cycle. A couple things to note: That verapamil dose is a low one for CH. CH'ers routinely find that much higher doses are what actually works. Hopefully someone who's been there will happen along and elucidate, or you could start a new topic here or at the other ch.com message board asking about it. If the prednisone isn't helping much, well I'd taper off. That's because at prolonged doses of 60 mg I experienced immune system malfunctions, and this and many other serious probs are to be expected with sustained high dose prednisone use. I just don't know how dangerous 40 mg a day is compared to 60 mg. If you're in the US you can potentially just get welding O2, cheaper, without a prescription! And it's reputed to be the same stuff as medical. lots of CH'ers do this. I bet CHfather will provide some input on this. Always listen carefully to everything he says. I do. 8-) Your idiot doctor sounds kind of hopeless, but don't you be! I imagine you're pretty much in "high cycle" at the moment with attacks coming on strong. That could make it more difficult for the following couple of quick and dirty free CH aborting techniques to work, but they could be worth a try: 1) At onset of attack, breathe freezing air deeply through the nose. if the outdoor weather isn't co-operating, jump in the car and put your nose up to the blasting A/C vent. 2) At onset, exercise extremely vigorously, as in sprinting A couple more side notes - drink an energy drink or shot such as Red Bull that contains caffeine and taurine at onset. This could also help the partial dose imitrex/freezing air/exercise/O2 work longer and more effectively. If you were to taper off the prednisone and hadn't taken the imitrex for 5 days it could still be worth trying RC seeds (which are legal/easy to acquire) or mushrooms even while still on verapamil.

Crystal check out this link that describes how to stretch your imitrex doses - it may enable you to get 2 CH attack aborts from that one last shot (I've used this successfully many times for getting 2 doses from a 6 mg shot): http://www.clusterheadaches.com/imitrex.html

That sounds like it would be the pill form of imitrex, which most of us find to be quite ineffective. Of course there's a wide consensus among those who've tried high flow 100% O2 that it is a preferable first line abortive, but if you are going to use imitrex, have you considered the partial dose injection method which is much more effective than the pills, and cuts expense and side effect risk by providing 2 or 3 aborts per injection? Here's the link: http://www.clusterheadaches.com/imitrex.html

Well I think you're holding up dam well under the circumstances Ricardo and am glad you bring your personality and considerable intellect to the family get togethers here.  8-)

I found myself LOL'ing at some of the shots in this Halloweeny faces of fear gallery (taken at a commercial haunted house - the folks pictured here were paying for the thrill), although I haven't been through all 147 (!) photos yet. http://www.cbsnews.com/2300-504784_162-10009839.html?tag=page

Lookit Ting pumping iron! She's becoming some kind of super hero!Â

Hi Brad, Good to see you here - now your hangin' out with folks whom you have a very prominent thing in common with! I'm sure lots of us here have thought of surgery due to the severity of the condition, but, for good and happy reasons, 99.9% of us have dropped the idea. 2 main reasons (from my perspective at least): 1) There is a very good chance of major relief to be found through the *busting* that Tingeling mentioned, and other non toxic treatments. IMO Essential reading/viewing on the subject of busting is this Newsweek article and this video talk by Bob Wold: http://www.thedailybeast.com/newsweek/2009/10/14/the-psychedelic-solution.html http://vimeo.com/10918637 2) Deep brain surgery is an outmoded way to go. Dr. Peter Goadsby, considered by many to be the world's foremost medical authority on CH, gave a talk I attended recently, and although in the surgical world there are now some miniature implants (in the jaw) for CH that could be considered in a pinch, newer technology is now in a testing/approval phase that will require no implant, just a remote *wand* sort of device. Basically we're just not into the drastic surgery thing with it's low success rates here because the much less risky busting approach works quite well for most of us, and that even includes some chronics among us who've been able to go into long stretches of full remission.  8-)

Or maybe this cake would be more apropo for Dan ;D :

Time for a Texas sized partee! [smiley=birthdays.gif] [smiley=2vrolijk_08.gif] Here's a cake ;D :

Hey Panu, Yes I too find that magnesium goes a long way towards preventing leg cramps. I've read that leg cramps are often caused by a magnesium deficiency, but this is the first I've heard about CH being caused by brain cramps!

Agreed with b.g. - If there's one thing I think I've seen an absolute consensus on here, it's that you need to hit it immediately when it's much easier to knock down, do NOT wait.