Bejeeber

My only experience with running and CH involved bursting into an all out sprint (or rapid running in place) in an occasionally successful attempt to abort an impending attack. It really only worked a couple times for me when I was in the less intense initial part of a cycle though, it's level of effectiveness for me was similar to breathing freezing cold air.

Kat I'd suggest it doesn't almost seem like you need a headache specialist type neuro as opposed to the garden variety type, more like you definitely do, based on your experience and that of zillions of other CHers.

Vader, I hope in your research you've at least become encouraged that there are treatments for CH, such as are outlined in CHfather's overview link, and also touched on by FunTimes above. Some of us really do find significant relief, and while there can be a bit of luck involved regarding who is going to respond to what, my money is on you finding your way there too.

+1 for what an excellent and moving video that is.

I guess you could say sleep is an extremely common trigger, maybe number one. From my personal experience and what I've seen others mention, I'd say alcohol is way up there too. I still tend to believe that some can age out of CH, especially after having seen an extensive long running survey (Scandinavian I think) years ago, where this was tracked and "confirmed", but how many of those who have aged out and haven't had a cycle for at least a decade are likely to seek out an online message board to discuss it? So far I think it's been zero. Actually I guess you never really know you've 100% aged out for sure until you're dead, right!!?? In the highly anecdotal realm I did meet a retired law enforcement officer CH'er, 60+ years of age, who was planning to bust with psilocybin if another cycle were to ever hit, but it had been 10 years since his last cycle and he felt there was a strong chance he had aged out.

Ugh. Sorry to hear this about your CH'er Anita. I'm aware of rare instances where a pred burst has knocked a cycle out, but all too often following some days of relief from a burst, the CH comes back with a vengeance, something I've personally experienced and seen many others also report. Hoping you both can escape the war zone ASAP and find some peace.

Jimmy, I believe Twisted-M makes a valid point, in that those of us who've spent years on end observing, discussing and experimenting with CH treatments have seen certain ones have proven to be most effective and work for an impressive percentage of headbangers, and the magic, AKA "psilocybin busting", T-M speaks of is known to be a powerful preventive, the most effective preventive for plenty of us. I'll personally vouch for it's effectiveness, as could thousands of others at this point I believe. With you right on the verge of a cycle coming to an end (I'm hoping!), I'm not sure whether you could get set up with it before the CH is gone, but I think it's something to keep high on the radar in general, while also keeping in mind the contra-indications regarding family history of schizophrenia, etc. Now RC (Rivea Corymbosa) seeds, a psychoactively milder busting substance, are legal to quickly purchase online and to possess, but not ingest, and some have had success with them.

Good one Spiny.

My impression is that major stress, such as divorce, financial disaster, loss of home, job, etc. can trigger a cycle in an already prone CH'er, basically the worst times imaginable to be hit with a cycle can be the most likely. Plenty of headbangers have reported the same about weather changes for sure. As far as individual attacks within a cycle are concerned though, "stay stressed" has actually been a popular refrain, since relaxation in the form of sleep, naps, weekends, etc. is known to be a strong trigger. This would be a much less traumatic level of stress of course. I tend to think "stay engaged" can be a better, still effective way to try to operate.

Hi Jimmy, I know a chiropractor who is a long time CH'er, and who has been very involved with this site. He doesn't find chiro to be of help with CH, and the same conclusion has been come to by plenty of other headbangers. Bleach fumes can be a trigger for me and others, if the swimming pool was chlorinated, I wonder if that could have played a part? The neck issues are common. You probably won't be surprised to hear someone like me say it's difficult to define a typical length of an attack. Maybe that's because my personal experience has seen them gradually go from 20-ish minutes to more like 3 hours over the decades. It sounds to me like you could still adopt a more effective O2 dispensing strategy than your current approach, and it could make a big difference. If you're going to continue to go with triptans, imitrex injections may be your best ins. co paid bang for the buck - only 2 syringes of it may be covered a month, which sux bad, but the doses can be split so you can get 3 aborts from one syringe, so at least you get 6 aborts total. And the shots are known to be the quickest, most effective method of delivery.

Hi JimG, Sounds like 17 years in, your CH had a pretty established pattern of behavior. The weird thing is, it turns out it's common to be hit with a pattern shift you never would have expected, even after umpteen years of predictability. One of the most common shifts is the lengthening cycles BTW, so It's probably not worth worrying about chronic for another few months at least. Lotsa headbangers are convinced the usage of triptans can cause cycles to lengthen. I've been episodic for going on 37 years, so I had 12 years or so of CH joy before triptans hit the market in the US, and what I found was my cycles kept lengthening and lengthening before I ever tried a triptan. I had been on some heavy cocktails of other prescriptions though. Here's hoping you'll be 12-ish weeks and done this time, with a sudden cessation, or at least you'll see it tapering off soon, which I figure is a likely scenario. I'll officially place a bet on that right now.

Hi Jimmy, A lot of us around here would agree your specialist made the right call about topomax being too heavy. Many have come to refer to it as Dope-a-max, Dopey-max, etc., and find it messes with the cognitive processes way too much, plus it isn't that effective. For CH'ers who are typically awakened with an attack an hour or so after falling asleep, I've seen reports of an oral triptan before bed working as a preventative, so I guess I shouldn't be too surprised to see the frovatriptan being prescribed in that manner. Maybe you've started researching busting at this point? It has the potential to knock out entire CH cycles, which can be nice. You have to be "de-toxed" from triptans for 5-ish days before trying it though. I had an acupuncturist do a great job of rapidly ridding me of some tendonitis in a wrist before, so I'm a believer, but I'm sorry to tell ya it has scored low when it comes to directly treating CH.

Hi Anita, CHf just dished out some great, critical Info IMO.

Interesting perspective Jon, thanks. Agreed with Spiny on how common it is for episodics to fear they're going chronic, often when we're really not. Also, cycles can elongate for some of us episodics as the years with CH go by. Maybe it can ease the mind a little to know that this isn't so unusual, and doesn't necessarily indicate we're on the verge of going chronic.

Hi Jimmy - I see Dallas Denny and Spiny just double teamed you, which is fantastic luck, as they are veteran CH'ers with tremendous knowledge of the most effective CH therapies. Me, I've been episodic for 37-ish years, with some long remissions at some points, and like DD and Spiny, years of poring over reports from our fellow headbangers, along with lots of CH discussion. I'm in agreement with all the input you've received so far.

Hi Jacob, hate to hear the CH is still relentless for you, but glad to see you continue to get excellent advice here. Many other headbangers have also reported looking back to when they had been recreationally tripping and realizing they'd been CH free during that time period. In your case, it seems it could be a positive indicator that busting could work for you. You'll want to be aware that triptans like Zomig are known busting "blockers" and should be avoided for 3 to 5 (depending on who you're talking to) days before busting.

Hi Junco, I imagine it wouldn't be a bad idea to research a bit on the topic of schizo-affective and psychedelics, as last I checked (which was years back), even those who recognize the potentially therapeutic properties of psychedelics, recommend against them for anyone with a family history of schizophrenia (if that is related to schizo-affective..?). Also, CHfather isn't known for giving people a hard time, just the opposite in fact. He's well known for being non-judgmental, and for volunteering his time to help countless headbangers find their way to some relief, so when interpreting his words, I think that can be a good angle to come at them from.

Yep, know what ya mean, and if you take the encouragement offered so far to keep searching and asking about stuff here, I figure that's one of your best bets for attaining manageability and getting the life back. Lots of CH'ers have. As CH goes, you appear to me to have a particularly severe case, which is saying a lot. I feel for you man, and incidentally would like to know if it's blues music you are a fan of, and if so, which artists?

CHfather nailed it, every single word of that condensed insight rings true. Count me as someone for whom shrooms eventually stopped working at one point, although I still consider them a really powerful preventive, and like you I obtained some major, priceless relief from them, knocking out entire cycles. My personal experience also finds me in the category CHf mentions where having switched off to another another busting agent, namely paper, currently does work.

Sorry you had to learn the hard way, as so many of us have, that alcohol is trigger, and potentially a nuclear level one at that!

Hi Josh, What the ultra knowledgeable lay experts just said. I'd like to emphasize the fact that CH can often be treated effectively. You've happened upon the right place for info about that, and for a lot us there's no reason to have to be experiencing unrelenting, full force attack after attack. "Busting", an alternative treatment discussed in the closed boards Spiny mentioned, can be an an impressively effective preventive......

Hi Shoog, Sorry I don't have much time for elaboration right now, I'll try to get to the point with my thoughts: Triptan spray: If you're tasting it you're probably "sniffing" while using it, a mistake most of us make unless instructed otherwise. I recommend researching the instructions for it. Last time I checked, it's just supposed to go up into your shnoz, with no sniffing, not used like an actual inhaler. Injections are widely known to work quicker, plus there's the major advantage of being able to use partial (but still very effective) doses, and stretch your supply / reduce your side effect risk dramatically 100% O2, as you'll be instructed on the use of here, aborts attacks well without side effect risk or blocking other treatments. Verapamil can work for some. More effective is "busting". It will sound crazy at first (well it did to me), but see the Harvard and (currently underway) Yale studies, etc., plus tremendous amounts of CH'ers who've found long lasting prevention relief with it, sometimes from a single dose, and you'll start seeing what a breakthrough it can be. There's a "D3 regimen" that some find relief from, and it shouldn't interfere with anything else you're throwing at the CH. You were discriminated against due to your gender, denied proper care, and left in unspeakable pain. That's horrible. Not that it was done intentionally, it was due to an old, stubbornly lingering misconception, but that kinda %&^$ has really gotta stop! -Jeebs (not female, but still outraged. My dear mama taught me about gender discrimination )

One of the absolute worst cases of chronic CH I've known of, via a forum member here, "Bonkers", involved head injury induced CH where where the pain level would sky rocket so high, passing out from it was was actually routine. So my take on passing out from CH pain is it is very rare, but not unheard of, and there's no hard rule that it can't happen to some individuals.

What they said. And as far as diagnosis is concerned I'll just re-emphasize the part about getting to a genuine headache specialist. Lots of CH'ers, especially females, have been done wrong by non headache specialist types, and been denied a CH diagnosis with disastrous results. If you do have CH, well on one hand that sucks, but on the other hand you've found a place where you can get some super helpful input, and potentially beat this thing back dramatically, which lotsa CH'ers have done.

Vitamin L - I personally went the .75 tab route, 3 times to knock it out. Not sure if there is even any consistency of potency with tabs from various batches though? I know at one point some busters were doing a thing when familiarizing themselves with new tabs where they'd try a half, and if they weren't feeling it enough an hour later, up it another half. And there's a long history of course with macro doses, where it's considered most effective to wait days (some say 5) between doses. Understood how with work and kid, etc. it can be genuinely challenging to find a time for a macro dose. I'm not kidding you, I've been toying with the idea of putting in a semi all nighter vitamin L bust tonight with my last remaining paper, as the 'ol beast suddenly is making some loud noises about wanting to come barging back onto the scene unfashionably early.