Bejeeber

Hi SunJ, Just a couple quick initial thoughts: Permanent spot? NO! Well at least not a constant spot, since so many CH'ers have had impressive success preventing entire cycles, our prevention tools will only continue to get better and better, and it's not like you're a chronic CH'er anyway. Sounds to me like you started at exactly the right place for an abortive, O2 (hopefully high flow 100% O2 with advanced breathing techniques). Typically, next up for the most effective, and thankfully non-toxic, preventives would be the D3 regimen and consideration of busting. One of our pals here, Dan, was featured in a National Geographic segment on busting: http://channel.nationalgeographic.com/drugs-inc/videos/magic-mushroom-medicine/

Hi Ditko, Agreed with the input from CHf. And since you're looking into anything that can help you fight back the monster, I would suggest prioritizing looking into what so many of us have found to be the most effective preventive, bar none: Busting (warning: pharma can block the therapeutic effects of busting). I'm saying this especially since it is 100% legal there in Amsterdam where psilocybin truffles are sold in shops. You could try searching this forum to see reports from others in The Netherlands.

For my first couple of CH cycles the attacks were spaced out, as in I might go a few days between attacks, if that is what we're talking about. The only instances where I recall seeing imitrex pills reported as effective for CH have been when someone knows exactly when to expect an attack and will take the pill an hour or so before, or if someone has an important event during which they can't afford to suffer a CH attack, so they take the pill before, just to ensure they'll remain PF. If imitrex pills only cost 1/3 as much as the injections (which I agree are just crazy expensive), well you could potentially still get as may aborts per $ with the injections, following the Extending Your Imitrex method. Glad you're pursuing the O2 since it is the nice non-toxic, side effect free way to abort attacks.

Thanks for that encouraging story Dan! CHf, I know you asked Dan, not me, about the 5 hr Energies and sleep, but for the record I've been deploying a couple per night lately for wake up hits and soon afterwards I've been doing that same strange and unexpected thing other CH'ers have reported being able to do - going back to sleep. Dan if cold showers can work for ya, well for future reference, one of the many other ideas would be this simultaneous combo of 3 abort techniques that has worked for me recently: 1) 5 hr energy shot 2) ice cube(s) pressed against back roof of mouth on CH side 3) blast car air conditioner on coldest setting, highest fan, put nose right up to the vent and forcefully breathe the super cold air in through the nose, out through the mouth, at a pace on the verge of hyperventilation. Each one of these alone has worked for a CH'er at some point, so I figure why not go for a combo platter? Taking off in a sprint around the block for an all out blast of vigorous exercise can substitute for the cold air when health and circumstances permit, and there can be a bit of a refreshing novelty to it the first couple times or so.

Thank you for the up to date insights CHf, I wasn't remembering about the demand valve prescription thing. I do get plenty with the Flotec, but I also burn through tanks like a futhermucker, so I think of the demand valve as a way to help conserve O2 supply, cutting down on the frequency of O2 deliveries required.....ya think that is a realistic assumption, or is this just me engaging in my wishful wishing again?

Hi Spiny, what I have is a Flotec regulator that goes up to...I think 65 LPM(!) and an on old non-rebreather "ClusterMasx" which is retrofitted with a 33 gallon redneck reservoir bag. Haven't been able to use the Flotec yet since the O2 people won't be delivering the right tanks (M) until later today. So far they've only been able to show up with E tanks, which of course my regulator no workee with. I tell ya, if this cycle keeps trucking (which I'm still hoping it won't) I seriously may put money where my mouth has been for so many years and spring for one of those snazzy Demand Masks!

I hear ya Razor, I've pretty much always pretended to go along with some lame arse low flow rebreather prescription just in order to get my paws on some o2. I did encounter an issue with Apria last time though - some busy body gal there called me up when I was in high cycle and she went right into interrogation mode on why I was using lotsa O2, at which point I instantly found myself LYING about my doctor approving it, at which point she started talking about needing an updated prescription. It was dicey. This time the doc said OK to a 15 LPM, non-rebreather prescription, and the result was the O2 supplier holding the O2 hostage an extra day, while they tried to figure out whether a 15 LPM regulator exists. Nobody really wants to go an extra day without O2, right? Well they did eventually show up with the 15 regulator, and a......canula.... .

Ooh that's some good, expert info, and nicely specific, thanks CHf.

Here on a Sunday I'm requesting an O2 prescription via my online "patient portal" with my GP doctor's medical group, in hopes of them seeing the request first thing Monday morning, and my being able to fill it on Monday. I had asked the doctor for a prescription weeks ago when I suspected a cycle could be starting up, and now that I know one is indeed getting in gear, I've learned no prescription was called in. Maybe because as a GP he'll have no experience with CH and not know what to write. So I think I'll offer an example of exactly what he could write, and although maybe I should be an activist about educating him on high flow 100% O2 just in case he ever encounters another CH patient, I'm a little more about the most pragmatic way to ensure he'll write a prescription at all right now. It has been my habit in the past to work the system by getting whatever sort of prescription, then yanking the whimpy low flow regulator off the M tanks delivered from Apria and throwing out their joke of a rebreather mask practically before the door even hits them on the way out, while fastening my hot rod high flow regulator on there in order to get down to some real business. So who here knows exactly what a GP would be likely to automatically and unquestioningly agree to write for a CH O2 prescription (that I could then do my own thing with)? Welding O2 will be my backup plan, and I'll be seeing if per chance there is a local headache specialist that doesn't engage in the standard and grossly negligent practice of making CH patients wait for months for an appointment. Also I'm busting, on the D3 regimen with benadryl, know about all the pharma, blah blah.

The only successful preventive use I can recall at the moment was the continuous 4 LPM via canula (NOT MASK!!!) while sleeping at night, as used by one of our real O2 expert CH'er pals. Bev, an unfortunately very high percentage of CH'ers find O2 ceasing to work for them because it hasn't been prescribed effectively. O2 can suddenly become very effective again with a non-rebreather mask (100% O2), and a high enough liter flow.

I'm glad you're getting lots of good input here. And glad you're not on any extended prescriptions of high dose prednisone, as surgeonasim and some others of us have been on in the past in desperation and paid a dear, permanent price (it's SUPER dangerous at high doses when not prescribed in a short taper).

Here's a National Geographic segment which covers busting and features one of our forum members: http://channel.nationalgeographic.com/drugs-inc/videos/magic-mushroom-medicine/

Hi Debs, Yep it's unfortunately still typical for us CH'ers to be prescribed a weak and ineffective version of O2. Once you graduate to high flow 100% O2 though, it can be very effective. Also very common is the sentiment upon first landing here of being pleased to find others who understand. That sentiment often quickly gives way to one of being REALLY pleased to find out about game changing non-toxic treatments. For instance busting, which I and countless other CH'ers have deployed and have been able to prevent entire cycles with.

Hi DN, What CHf said. It's well known among headache specialists and CH'ers who hang around theses forums that imitrex oral tabs are too slow acting for the vast majority of CH'ers, whereas if you're going to use imitrex, injections tend to be very effective for aborting attacks (watch out for potential rebounds and other side effects though). Unfortunately issuing a tab prescription is still a common mistake made by GPs and so forth who don't have much or any clinical experience or training regarding CH. Understood why you'd feel terror regarding the future, but good news: LOTS of us CH'ers have actually beaten this affliction back very significantly, preventing entire cycles even, with the non pharma approaches CHf has mentioned, and there's a good chance you will be able to also. Besides being non-toxic, the non pharma actually turns out to be more effective for most of us. Meantime, if you continue with imitrex and switch to injections, the extending your imitrex tip that outlines how to conserve supply with partial doses could save your hiney.

Wow, if there's one extreme headbanger who deserved a breakthrough like this it's you Brian, very relieved to hear of it, just wish it would have arrived for you several years ago! Although "breaking the law and tripping balls" does work for a high percentage of CH'ers, I especially hope this SPG action can work to fill the gap for others like yourself who have been cursed with stubborn/resistant/severe CH and other head pains. Some CH'ers here didn't have as impressive results as are described in the video when they tried SPG, but still, you have me adding the SPG info to my priority CH files, thanks.

Now THAT is a super encouraging and morale boosting update - thanks Mit12!

My sentiments are in line with CHF's - there was a time when I would have answered yes to the poll questions, but I have been fortunate enough to have had the CH under control for a good while now, and I'll hope that's something that could still happen with you also.

It would be so nice if the D3 had this quick of an effect, but my guess is the prednisone taper is more likely what gave him the night off (or at least is a significant contributor), so you'll want to be on guard and brace yourselves in case the CH reasserts upon taper down. And slack, dg? NO, you are a hero in my book.

Sorry to hear of the high cycle crisis situation there, but glad to see you've been advised well, and are taking swift action with the high flow O2 and D3 regimen. Hoping the steroid burst kicks in any second now to quell the attacks, and that your hub sees an instant, dramatic improvement of his ability to abort attacks in a non-toxic manner as soon as the high flow 100% O2 system is in place! Meantime, when he uses the triptan injection, has he adopted the potentially game changing partial dose approach yet?

Yes, nice work, jkandola, here's to that pain free train rolling on and on and on.

WHAT THEY SAID. A boon for us to have a neurologist CH'er in attendance!

And thank you CHf for the diplomatic adjustment to my statement of not recalling seeing red eye described as a symptom. More evidence that just because I don't recall seeing something, doesn't mean I haven't seen it, numerous times. DOH.

Hi linnbakk, I can see why you have questioned the CH diagnosis, as there is hardly anything CH-like about your symptoms as far as I can tell. Agreed with jms that the eye is known to droop and water during an attack, but turning red is not a symptom I recall hearing of. A whole lot of us have come to realize (the hard way) that the one and only type of doc whose diagnosis can be trusted is a genuine headache specialist neurologist - I hope you can get to one of those (not a garden variety neurologist, as they're all too often ill informed).

Hi LM, Some of us have found the terror goes away along with the prevention of complete cycles via busting, and I'm hoping that could be the case with you too. Regarding imitrex, my experience was the first partial dose manual injection required mustering up a lot of nerve (but what a motivator an oncoming attack is!), then after that, manual injections just became a humdrum affair, with the realization that it is no big deal. Pinching a bit of belly fat to the side of the navel has proven to make for a good injection site, and often it is practically painless and so easily accessible. I do empathize with anyone who has a genuine phobia such as a needle-phobia though. In my opinion, until you really get to know who is who, advice received on Facebook is to be taken with a larger sized grain of salt, since you're not as likely to receive advice there from the likes of CHfather and some of the other regulars here, who as I imagine you have gathered, have tremendous knowledge gained over many years in the trenches, and are able to tailor it well to the individual.

There would be a big load of nickels on the online forums if there was one for every time someone reported this sort of thing. From what I've seen (and personally experienced), it is not uncommon at all for us episodics to start experiencing extended remissions after decades with CH. The lucky ones of us that is, it sure doesn't occur with everyone. When this occurs we also typically believe we're out of the woods, only to be disappointed when a cycle does eventually return. If someone has a short cycle, like just a few weeks, I can see the reasoning for riding it out with imitrex (although most of us find partial dose injections to be a more effective and fast acting form of imitrex than tablets). Otherwise, I'm sure you'll see how much benefit the headbangers around here get from stuff like high flow 100% O2 for aborts, and busting and the D3 regimen for prevention.