Bejeeber

Yes before I hung a left I could've mentioned that a headache specialist is usually the only one who'll know anything. The only knowledge most run of the mill neurologists have about CH is a couple catch phrases they learned, and they're both wrong.

Yeah as the decades have flung by it's gotten to the point where the hits can and will happen at any time of day or night for me (when I'm in cycle that is - I am one LUCKY lucky episodic). For the first 20 years or so of my 30+ years with CH I would never ever get a hit during my waking hours after nightfall (before bed) and was able to meditate every evening with no concern. I would try to claim those were the good 'ol days, but in recent years I've learned from fellow clusterheads on these 2 sister forums such effective ways to fight the beast that so far I've been able to consistently hit him back with nice crunching knockout punches , so these are more like the good days now, even if being on 24 alert is necessary. Meditating while treating - hey that does sound like it could be a heckuva voonderbar experience. 8-) With music or without?

Hey Sam, well glad to see you've been getting the great advice here - you are definitely going to find MUCH MUCH more effective ways to deal with this beast. I see you had a typical encounter with a terribly ignorant doctor who prescribed imitrex pills because he gets migraines (you're right of course, the pills are way too slow - if you're going to use imitrex, injectible is the most effective form). Here's the sad thing about most doctors IMO - they are arrogant, ignorant harm doers of the worst sort when it comes to CH. And I'll re-emphasize the point that any alcohol is a HUGE mistake. Anecdotally - like naps and sleep, I actually find meditation to be a trigger for CH when I'm in cycle. That is one ironic rip off.Â

Agreed. Sigh. We humans have concocted many twisted and back asswards taboos, stigmas and laws. Historically I guess we can see it's kind of our nature to do so. Case in point: In much of modern society, prednisone use, although extremely dangerous, is fully accepted and encouraged, but a plentiful little mushroom that grows wild and is more effective than just about anything else known at stopping the most excruciating head pain known to medical science is ILLEGAL to use medicinally??!!

"Oh Dan..." LOL! ;D

That's very interesting, especially since I know that anxiety can be a mushroom side effect during the short time one is under the influence. Oddly I find that they seem to have a calming / anti-anxiety after effect though - anyone else noted that? I actually have a bottle of skullcap herb here and plan to take some with the mushrooms next time I dose, as I read in the shroom guidelines it is a recommended anxiety easer, and unless I find out there's any reason not to, I'll be considering taking valerian and other relaxing herbs at the same time too. I figure that when we have herbs that are relaxers at our disposal, might as well take them instead of drugs, for some of the same reasons we've found mushrooms to be preferable to drugs.

Yeah, I just figure that when something like that goes ripping trough your head, there's gotta be damage to recover from. It's actually been a justification for taking preventative or abortive meds for me in the past, since some of the meds felt like they did less lingering damage than an actual attack would've.

Oh lordy another video opportunity missed! Can you imagine what kind of a killer video could be made - especially set to the right music - with clips such as Tingeling charging down the street in full sprint mode (maybe a slow motion close up would work nicely) juxtaposed with Kaboom's turkey neck and cheek fat pulling vacuum cleaner escapades!? Come to think of it slow motion could be good for Kaboom's stuff too. ;D

Well if you adopt the approach of just slugging down the seeds right before bed maybe you can do them any old night? That's how I've done it (after seeing it suggested) and like others, I find I gain a good solid night's sleep each time.

Glad to hear that's still the case (RC working for your daughter) Jerry!Â

I doubt you'll feel jack with 25-30 RC seeds. I don't recall hearing of anyone tripping at all on that kind of dose. But then there's this whole thing lately about whether the RC seeds from a given vendor are potent, so potency issues with RC seeds I've tried may be coloring my perception of what RC seeds will do.

If our clusterhead brethren and (sistren) responding to this could also indicate whether the seeds they bought seemed to do anything for 'em or not, that could be helpful too, since I think there's an ongoing question about the actual potency of RC seeds from one vendor to the next.

Your story is very touching Tingeling. And harrowing. Sounds like that man may have saved your life.

Hi Jilly from Philly Glad to see that you're getting the good answers and advice from the grizzled CH vets here. 8-) I would add that while you're seeking out a new doc, do everything you can to make sure he/she is a headache specialist. Your willfully ignorant bonehead dork of a neurologist is unfortunately very typical of non headache specialist neurologists. Sounds like you got a good recommendation for the Jefferson center. One of the great things right there about this online forum. Since as Hipshot noted, you'd need to detox from verap to effectively "bust" (mushrooms), the O2 would be a critical component in that strategy of course. Lotsa CH folk who have a difficult time getting an idiot doctor to prescribe O2 just do an end run and get the same O2 at a welding supply place without prescription. In any case you'd likely need to also order a good non rebreather mask and hi flow regulator online. [Edit: dang I now see that you guys posted more info about this before I was able to finish typing my diatribe ] Sleeping.....some CH'ers report that melatonin actually prevents their night time hits, not to mention it's use as a sleeping aid. Starting dose for hit prevention is 9 mg before bed, with some people going all the way up to 18 mg - or even 25 mg (!) before getting relief. On the extremely anecdotal side, when it's just sleep that's the issue, I personally find that 5-HTP along with 3 mg melatonin knocks me out good. (5-HTP is a form of tryptophan, that stuff in turkey that causes you to involuntarily nap 8-))

Did you catch them at onset with injector?

Imigran (imitrex), is certainly a much more controversial abortive than O2, and therefore it is good to use O2 as a first line abortive. Personally I have reserved imigran for my backup in case the O2 doesn't work, or isn't accessible, and although many swear at imigran, I have sworn by it for this type of use, as it was a component that has allowed me to abort every single attack in a 2.5 month episode last year (I'm hoping that now that I'm busting with mushrooms, I won't have need for abortives anymore). I feel no side effects whatsoever from imigran, although I think that folks who believe it can extend episodes may have a case. I've used imigran since it came on the market BTW (about 17 years ago I think). Injectible is by far the most effective form (extremely effective in fact) and this tip for extending doses (and avoiding OD) can be critical for those who are prescribed 6 mg injectors: http://www.clusterheadaches.com/imitrex.html

Well hopefully now that you've brought up the severity of her attacks after alcohol, she'll start monitoring this herself, and if she sees an alcohol/severity correlation I would think/hope that like most of us she'll drop the booze like a hot potato until she's sure it no longer has an effect.

I'm with TakinItEz on that, and on an air related note, there's a cheap abort that can work for some of us some of the time: The deep breathing of freezing air through the nose at onset of attack. It actually works as well as O2 for me in the first week of an episode before the intensity of my hits has ramped up and while I'm often awaiting my O2 cylinders. It can be particularly easy to try this this time of year in many areas of course (just step outside!), but if you're in a warmer area, the trick is to hop into the car, engine running, blast the air conditioner on max cold, put shnozola up to main vent and go at it. Should take 10 minutes or so, and if successful, the welcome in comparison sensation of an ice cream headache may take over momentarily - with CH aborted.

Agreed that O2 is absolutely the safest abortive. It can be very effective too. Banish any concerns about lung damage - they are misplaced (just avoid using a "bubbler" with O2 flow above 15 LPM). And Imitrex is controversial to be sure. Personally I've used it since it came out, and used it occasionally during my last episode when the O2 wasn't available or effective enough. This was a 2.5 month episode where I was able to prevent or abort every single attack - a pretty rare accomplishment, but I've been at it 30+ years, did a ton of research, and also got lucky. My hope now is to not have to even mess with abortives anymore, now that I'm busting with mushrooms as a preventative. I'd suggest putting all your primary focus on getting high flow/non rebreather O2 as outlined here: http://www.clusterheadaches.com/O2/index.html and then moving on to preventative decisions after that. Typically we have to order a high flow O2 regulator and an "optimask" online in order to acquire an O2 system that will be most effective at aborting attacks quickly, so that's something to hop on ASAP. [Edit:] I've been thinking about this, and although most of us have followed the directive at the link supplied to put together hi flow regulator and optimask components, there's another, simpler, reportedly more surefire way to go that is briefly mentioned in the link: a "demand valve" system. it is assumed that people don't want to spend the extra money on one, but the highest CH O2 guru, "Batch" uses one, and they apparently can lend themselves more to portability too. Giussepi who is a very regular contributor over at the ch.com message board was a patrol police officer for many years, and would carry an E tank with demand valve in his cruiser. If an attack hit he'd just pull over, breathe the O2 for 5 minutes, then he'd be right back on patrol. Wanted to mention that in case you can afford one, because I'm getting the impression that it is an option that is too often overlooked. Your son is going through some hellish times to be sure, with a level of pain that most people will fortunately never know, but with a wonderful mom like you assisting he'll be just fine - really, and especially encouraging is the fact that we're figuring out much better ways to deal with these nowadays. His life'll be good.Â

I second that. Wholeheartedy. And don't be surprised to see some results. Here's hoping.Â

LOL! ;D Gallows humor like this can be stress relieving and therapeutic IMO - I felt a little stress jump right offa me just from reading through this topic.Â

I haven't researched this so I'm just shooting from the hip here 8-), but when you look at what Mushrooms and LSD have in common, isn't it mainly the hallucinogenic properties, and would that be an argument for hallucinogenic properties most likely being the main thing in mushrooms that helps CH?

;D ;D

Good point Alleyoop - heck my wife aborts her migraines with energy drinks now because I suggested she try it (not that an energy drink would actually abort a CH attack for me).

When I first started using O2 in the 1980's (!!) I was somehow able to abort many attacks with a nasal canula. That stopped working at all though after awhile, so I agree that you'd be wise to start ordering your non rebreather mask now. I found at my last peak cycle when the wake up attacks were coming on really hot'n heavy that I would be routinely be reawakened with a rebound 1 hour after using O2. I probably should've stayed on it longer, as Kaboom suggested above.