Bejeeber

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.

True, you have to be dead to be able to report a permanent end to your cycles, but I know at least one long time CHer for whom the condition appears to have burnt out (no attacks for over 10 years, and no preventative steps taken during that time).

Glad they consulted with Cluster Busters regarding real world doses, lending all the more confidence in the study.

Hmmm.....is it an un-buster? That would be a good question. I have the feeling we'd be left trying to figure that out ourselves for a good while before any psychedelic / ketanserin / CH study would be undertaken.

https://psilocybinalpha.com/news/mindmeds-lsd-neutralizer-study-begins 'MindMed has commenced a study for its “LSD neutralizer technology,” which it hopes will be effective in shortening and even stopping the effects of an LSD trip during LSD assisted therapy sessions. In collaboration with the Liechti Lab at University Hospital Basel, a Phase 1 clinical trial will evaluate the effect of ketanserin for this purpose. MindMed hopes the study will be completed by the end of 2021.'

My Google News feed keeps presenting me with confirmation bias stories on the subject : PsyPost: Rapid antidepressant effects of the psychedelic ayahuasca linked to changes in inflammatory biomarkers.

Volunteering for a study like this is, knowing you may receive a placebo and be subject to some out of control attacks, is nothing short of a heroic act as far as I'm concerned, FunTimes - THANK YOU.

Article: Transforming psychedelics into mainstream medicines "......research has revealed that some psychedelics that activate the serotonin 2A receptor are potently anti-inflammatory at doses unlikely to result in psychoactivity."

I guess time (with more research, more experimentation) will tell. Meantime, there's this from https://www.verywellhealth.com/micro-dose-lsd-5077103: "....People with chronic pain diseases such as fibromyalgia, lupus, and rheumatoid arthritis may, according to researchers, benefit from extremely low doses of lysergic acid diethylamide (LSD or "acid").."

I'll suggest those of us in busting mode could start thinking about and noting whether we've experienced other anti-inflammatory benefits. This could just be coincidence, and an account from one lone dude is as anecdotal as it gets, but personally I'm slap-happy to report that following the past couple busts, I've had inflammation symptoms such as lower back pain go poof.

Drewbie, I'm going to guess here that you are actually NOT "one biological flick of a switch away from full blown cCH", but of course I realize strong anxiety can make it convincingly feel like you are. Besides encouraging you to continue to rigorously adhere to the D3 regimen, I'll just repeat what I've reported in other threads in this forum, even though busting may not be advisable, and could present sourcing challenges for you: I found busting not only helped quash some entire CH cycles for me, but it long term quashed my CH related PTSD-like symptoms (basically anxiety/fear/dread). Ironically during some of my busting sessions, I experienced very heightened anxiety, so I now advocate a diazepam type tranquilizer while busting for anyone prone to anxiety (but not such medication for daily non-busting induced anxiety). And for a good while now there have been the reports like this about how A single dose of the psychedelic compound found in so-called magic mushrooms has eased anxiety and depression for a group of cancer patients for more than four years. Not that we are cancer patients. You mentioned how exceptionally physically active and fit you were prior to this difficult bout - since exercise is also really supposed to be good for relieving anxiety, I hope you can find a way to get back to it soon and start enjoying its benefits again. FWIW there's also this bit I found interesting about a new testosterone spray to treat anxiety disorders. All this said, if I was facing an unrelenting bout with imitrex effectiveness waning, I'd have to assume I'd find myself right back in the heavy dread zone. Sorry to hear your nerve block was delayed this time around, with things going full blown while waiting, but glad to hear that at least the nerve block has had some real effectiveness.