Bejeeber

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.

It's so good to hear of your success Nikkk. Now I wouldn't be at all surprised if a larger dose could act as a longer term preventative for you.

Thanks for that hedzup on the dalt legality question Ricardo.

Hi Matthew, Just wondering if it could be worth trying mm as a preventative inside capsules and also in between attacks (so hopefully there wouldn't be the pain causing you to not be able to keep them down). I have no idea how 5-MEO-Dalt, which has been popular among the Facebook CH crowd for awhile now, might compare to 5MEO DMT, but last I checked it is legal and order-able online. Others more knowledgeable will hopefully be able to chime in.

I'm not sure about any of the above questions, but I can say that I don't recall a single incidence of someone generating a recurrence when dosing at the end of a cycle.

Hi Jannim, You really made a good move by joining in here, and my prediction is that through what you and your CH'er boyfriend learn, his CH experience will be revolutionized and become dramatically more manageable, as it has for countless others. A big reason for my prediction is you just connected with and got the attention of the ultra-smart CHfather who is incredibly knowledgeable about the most practical realities of how to quash CH ASAP, after spending years on end, pretty much every single day, poring over reports from CH'ers and interacting. Lots of other good folk are here too, such as the voonderbar Tucker with his offer to do the O2 walk through. Now let's stop calling the imitrex injector an epi-pen ha ha. Our pal Hipshot was featured in a National Geographic segment on CH that is extremely pertinent. Viewing it has provided a shock to the system and put CH'ers the world over on the fast path back to pain-free status (with an especially high rate of success for episodic CH'ers, like your boyfriend).

I would imagine the prednisone would be the most likely thing to credit for your first day pain free, Suzz. Since you've been on it before, it's probably not news to you that the CH can return with a vengeance after the taper, so that's something that should be braced for. I guess I'm mentioning that here more for others who may not have experience with prednisone.

Wow you DO have the best Doctor Suzz - so glad you finally got such a lucky break!

Man that'll be nice if MM is found to improve short term memory. My short term has been crummy for a longggg time now, BUT, as I have posted in the past, the supplement phosphatidyl serine is known to improve the condition for some people and it does so significantly for me. I've been on and off it several times over the past years and every time I go off I find a reversion to a definite, marked decrease in short term capabilities. In fact I tried going off for months over the past holidays and only went back on recently - I think it may be starting to kick back in now, but I'll try to blame having been off of it for some of the more pronounced lapses in my posts here over the past couple months. I don't believe it will work for everyone, as always it's a case of YMMV, but after finishing one bottle at 1 pill, 3x day, I think it should be possible for most people to tell if it's supplying a boost for them in the memory dept.

Glad to hear about that step in the right direction that I bet could be a lifesaver for many Finnish headbangers. I'm also really admiring your CH/O2 advocacy work there !! "Saint Tony Only" has a nice ring to it.

Adamlee you just got advised by one of the very best in cluster history. It looks like your CH experience could be seriously revolutionized indeed. High flow 100% O2 (not the weak and ineffective low flow rebreather O2 that was the only known game in town 20 years ago) should make a nice non-toxic replacement for the trex, but until you actually get your cluster paws on that O2, this imitrex tip explains how to stretch your doses, doubling or even tripling your supply (!), and lessening side effect risk. The terror is completely understood.

Hi Suzz, sorry you're a CH'er, but glad to see the good advice you're getting from everyone here. The HIGH FLOW 100% O2 does tend to be the main thing that will enable you to detox from imitrex while still being able to abort attacks, and then voilà ! you'll be ready to bust with mushrooms or other busting agent in a jiffy. The neurologist will likely prescribe the O2 not pure or strong enough, but fortunately there is a long tradition now of headbangers stepping up and advising others how to administer the O2 effectively.

Whoa a shaggy blast from the past! NICE that you are putting on this shindig - wish I was going to be in your neck of the country on Jan 30!