Bejeeber

Yikes you guys, udderly nightmarish on both accounts. @xBoss, when you got kicked out of remission, would this have been at a point in the cycle where alcohol consumption was still safe enough, but (confirming worst fears ) the epi packed that much more of a trigger punch?

Thank you for that highly pertinent report from the trenches Mr. jon! If I could knock out an epinephrine induced one off hit with a triptan while not triggering a cycle, I'd consider that a big win. It sounds like in your scenario that when you came to, the attack may have been well underway though, with no chance to catch it near onset.....

Like, if you're in a remission place where your ordinarily major trigger alcohol doesn't set you off, would epinephrine potentially be that much more still of a trigger than alcohol?

As I search 'epinephrine' here and on f-book I see practically all of the most respected CH advisors warning of what a major trigger it can be, and I'd really be a fool not to take those warnings very seriously! With some impending sinus surgery (just an outpatient deal, something I think of as being no big deal), the only real concern I have is the epinephrine factor. I'm inspired to ask if many other episodic CH'ers in remission have had the lidocaine/epinephrine stuff injected without being set off CH-wise? Apparently epinephrine is favored for its ability to discourage too much bleeding with procedures around the head area with all it's vascular pressure and fondness for shooting streams of blood out as if propelled from a device such as a Super Soaker™ squirt gun.

Sorry you are having such a rough go with the CH Eli, but glad that some of the best, most qualified advisors possible have been weighing in here so far. From this it sounds like if you were to keep up with the alternative therapy (busting?) every couple months, you could go into some genuinely long term remission, as many before you have? Although personally of the male gender, I have long suspected that the refusal of so many doctors to diagnose females with CH has been based on a self perpetuating medical myth that it is so much more prevalent in males. If you are continuing to use imitrex, one strategy you could consider would be to have a lower dose syringe pre-loaded and ready to go so there wouldn't be any real thinking or calculating required when you need it to administer it. This would probably require being well rehearsed with exactly what you would do when the time came, and this rehearsal could be done at a time when you are not actually having an attack. I have been there and done that. Markings of (2mg) doses on the syringes, and a plan for super easy, painless subcutaneous injection in the abdomen were part of the preparation process.

As a fairly textbook episodic CH'er I can say that once an attack has gotten a real foothold I've never been able to knock one back with O2 It's more of a catch it at onset or forget about it deal, so I feel like I understand where you're coming from @trjonas with not being able to tell if O2 would be of any use, since your onset was months ago!

Hi ifb, glad to see you got the super expert advice from CHf! sucking ice cubes (especially when placed on the CH side of the roof of the mouth) has worked for me as a helper for aborting attacks when I'm not in in a high raging phase of a cycle, but it's been an adjunct when also breathing freezing cold air at the very first sign of an attack. In warm weather this can be done by going out to the car (if you have one), blasting the A/C, sticking your shnozzola up the the vent, and doing some serious nose breathing. Then around the time a gloriously delightful in comparison ice cream type headache kicks in, the attack may just be aborted. And hey the ice cubes might even work in conjunction with the O2. I'm not familiar with Cambia, but if that's all ya got, one trick others have used with some success with oral versions of triptans - which take a while to kick in - is to take it right before sleep, if you get the typical wake up hit about one hour after falling asleep. A funny phenomenon some of us have experienced is we can throw back an energy shot (like the 5 hour brand) or drink (like Red Bull) to help abort a hit, then go right back to sleep. I'd say your doc was actually correct about the Zomig at the beginning, not during. You'll encounter numerous headbangers here who have knocked out entire cycles via the busting that CHf mentioned, and many who report good results with the D3 regimen.

Happy and successful busting to you xBoss. May the bust abide indeed - good one jon.

Intriguing stuff, tmac, I'll be following your updates with interest.

Ooh, thanks for the tip off, I read it and liked it - a bit surprised my Google News feed hadn't offered it up already, as it tends to know (after I've allowed it to spy on me) that I'm interested in this sorta thang.

Hi cgold! I'm afraid your story of being brushed off and misdiagnosed as a female is one I've noticed others reporting all too often. Sometimes makes me wonder if CH really is more prevalent in males, or if doctors are still just stubbornly continuing to refuse to diagnose females based on a myth. Last I checked, 7 weeks is nowhere near what is considered the chronic zone, you'd have to go on continuously for many many months (I think it is n the neighborhood of over 6 months, maybe someone can come on here and remind me), to be edging towards a chronic classification. Personally as an episodic I can say that yes over the decades the cycles and duration of attacks have steadily gotten longer and the pain has intensified. What first started as 2 weeks of attacks maybe once a day, a half hour each, very gradually devolved into 2.5 month long cycles, several attacks a day, and if an unaborted one breaks through it can go on 3-4 hours. BUT I still count myself lucky, as the remissions have also accordingly stretched out longer and longer. Many blame things like imitrex use for worsening their cycles. I don't particularly doubt them, but my CH went ahead and started continually worsening before imitrex was even available in the US. I like all the stuff FunTimes has mentioned, plus you'll find lots of talk about "busting" over on the Share Your Busting Stories forum where busting is discussed by registered members. It's not really discussed here on the General Board, but this is a quick indicator of what it is about, pasted from the Treatment Options and Choices for Cluster Headache Patients public section of this Clusterbusters site: Fast Statistics on Cluster Headache and Indoleamine Hallucinogens A 2006 study conducted at Harvard Medical School found remarkable results in CH patients and LSD or psilocybin mushrooms: Psilocybin reports: 22 of 26 patients said psilocybin aborted their attacks. 25 of 48 patients said cluster cycle was terminated. 18 of 19 patients said psilocybin extended their remission periods. LSD reports: 7 of 8 patients reported LSD terminated cluster cycle. 4 of 5 patients said LSD extended remission periods. A 2017 qualitative thematic analysis of user accounts in forum discussions found: CH patients consider illegal psychoactive substances as a last resort. There is little to no interest in the psychoactive impact of these compounds. Patients choose sub-psychoactive doses to avoid or limit the “trip” effect. Patients reported prophylactic and acute treatment for cluster headache using psychedelic tryptamines: LSD and psilocybin mushrooms.

A lot of episodics such as myself return to normal life, with triggers not an issue, unless we're feeling some indications (like shadows) that the CH is lurking again and ready to pounce. I won't presume to speak for otherwise chronic clusterheads who have busted out of it though.

I'll be interested in how the continuing research shakes out regarding psilocybin and PTSD, since I've been reporting for quite awhile that I credit Vitamin M busting with pretty much entirely quashing my previous PTSD-like dread of CH, and I hope others could receive that additional benefit from their busts https://www.thehealthy.com/mental-health/magic-mushrooms-psychedelics/

I have no recent updates, I just know that a few years ago when the original doctor was still living, I was told in a private conversation with a well known and highly regarded chronic CHer that the shot really worked for him (immediately shutting down a brutal high cycle), and one other chronic he knew, but apparently it wasn't proving to be as consistently effective for episodic CHers. These two chronics were pretty desperate and didn't go in with really high expectations, so imagine their relief and astonishment. I can't claim to understand what is going on with it, and of course any skepticism is reasonable / understood.

What CHf just said! With the determined and open minded approach you're taking I'm feeling confident you are going to find yourself in a much improved place.

Wouldn't that be most excellent if the Boswellia were to be found as effective for you as it was for the majority of those in the study - fingers vigorously crossed for you @trjonas!

NOOO!! Denied! Man, couldn't they mention that out of state gotcha on their stinking website then, or at least in a pop up when someone first goes to make an appointment? I am miffed for you @trjonas, and sorry I gave you this big bum of a bum steer.

OK, I got myself intrigued went back to that telemedicine site - now I'm seriously considering it for myself. Someone tell me if I've gone cuckoo with this angle. (Busting has been working for me lately, but if I am to follow my own preachings, I should have a neuro lined up and already consulted with, for my backup / contingency planning) I'm reading testimonials with stuff like "after 18 years being misdiagnosed and medicated incorrectly, Dr. Risa Ravitz diagnosed my condition as chronic Cluster Headaches and prescribed me medicine that changed my life!...."

Rest assured many of us, definitely myself included, really feel for you in your near impossible situation @trjonas. In the spirit of throwing more ideas out there, even if you may have considered them long ago, wondering if your insurance or whatever would allow for a telemedicine appointment with a headache specialist. I don't have a referral, I only spent all of 20 seconds Googling about it, but it seemed some stuff was turning up, like this telemedicine headache specialist Honestly, I'm not sure how or why I hadn't considered this option for myself yet!

Taking into consideration your concussion there's also this apparent classification of HC: Posttraumatic hemicrania continua I don't fancy myself a diagnostician though, so I'll try to shut my pie hole now.

Sorry if you've been grilled about this before @trjonas, but has "backwards CH" (as I like to think I've just coined the term) known as "HC" been considered in your diagnosis? Hemicrania Continua (HC) ...."This type of severe headache is constant and every day.".....

Yes. Worse year to year, including longer lasting attacks. But as a consolation, longer remissions as the years have gone by (a pattern that had started prior to any of my busting sessions, etc.) And I too have ralphed during an attack, probably at least partly due to a reaction to an ineffective ergotamine inhaler abortive med, but the attack continued on pretty much unfazed as I recall.

Hi Rush. Concerned about panic attacks during a bust? I think everyone here knows exactly what rant I'm about embark upon once again - I'll try to keep it semi-condensed this time: Valium (or Xanax) can prevent those, and it isn't known to mess with the therapeutic aspects of the busting substance. Personally I think of it as insurance against a bad trip, and never leave home bust without it. OK I did try San Pedro Cactus powder for one bust and felt zero anxiety that time, so I skipped the benzo, but for vitamin M or vitamin L I find good old fashioned valium to be the shiznit (many others have reported the same, and it has also long been used in ER rooms for those admitted with bad trips).

I had missed the difference between MindMed and MindMend myself, thanks for the eagle eye Jtiera.