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https://www.washingtonpost.com/health/cluster-headaches/2021/04/02/66ac73f0-8cdc-11eb-9423-04079921c915_story.html Great, in-depth piece yesterday that brings visibility to Clusters, our battle, and the struggle for acceptance of psychedelics as a treatment. Thanks to Bob Wold, Dr. Emmanuelle Schindler, Dr. Larry Schor and others for their continued support and pushing the message for the benefit of us all

@MaxHead I love Asheville! Thank you for letting me know - that's only about a 4 1/2 hour drive from me. I was actually hoping, as part of knowing who is near me, to petition South Carolina's legislators to make psilocybin and LSD legal for medical use, as Oregon has done with psilocybin. Anyone who lives in South Carolina could join me to make our cause more effective. That is, if I can get rid of my current cycle!

Hi all, Let me preface this with I've suffered from CH's since I was about 12 years old. As a female, I was brushed off and misdiagnosed for years. I'm 28 now, and for the longest time couldn't find a single other person who a) suffered from CHs firsthand, or b) even knew what they were, so finding this forum has been a godsend. I've found more useful information on this site than from all of the neurologists I've seen, and knowing I'm not alone is incredibly helpful. My question for the group is this: in the past, my cycles have fortunately been relatively short. As I've gotten older, I've found the duration and the pain has gotten increasingly worse, but fortunately, nerve blocks have historically cut my cycles altogether. One nerve block and I'm largely back in remission. My last remission lasted two years, but 7 weeks ago they came back. They're lasting longer than ever before (1.5-2hrs), the pain is significantly worse, and this time, the nerve block did nothing. I'm wondering a few things...1. What's the longest your episodic cluster cycles have lasted?, 2. How do you know if/when episodic has evolved into chronic?, 3. Is there anything I can do to stop this cycle apart from steroids? I was on them recently for ~ a month and am still recovering from the side effects. Thanks all!

You might already have seen this as you've been reading. It gives you a sense of the treatment landscape, including basics of busting at the very end: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ As others have mentioned, oxygen would typically be your best option, but with relatively short and infrequent cycles maybe that's more of a future consideration unless you can get it quickly. Triptans, either injectable (Imitrex) or perhaps as nasal sprays, might be right for you this time. The D3 regimen is a good preventive, but probably won't help you right away. Busting works for a lot of people. Strategies like energy shots/drinks can help you now. Same was true for my daughter, who used no pharma of any kind for the first ten years she had CH.

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.

I'm in Asheville, NC

I'll try my best to keep it short. I am 34 and have suffered from CH since my early 20's. After years of dealing with this damn condition I have learned all the tips and tricks. I use O2, D3, energy drinks, ginger and sinus plummer which is essentially hot pepper spray up the nose but I have been able to abort some hits if I use it early enough. After going on the D3 regimen in I think 2018 I had 2 years straight with no headaches at all..... Well I was spoiled and my headaches have come back with a vengeance when the weather got cold. Nothing seems to work anymore except "relpax" which is not smart to take all the time but I have no other option... not even O2 is working which is crazy because it was a miracle to me a few years ago. I am curtently on a steroid dose pack which used to give me a few pain free days but that isn't working either. I started the new D3 regimen a week ago with hopes that it will give me the same remission I had before.... I am at my wits end here... am I missing anything? What has worked for you guys to go into long periods of remission? PS. I would absolutely try busting but as I am not in college anymore I cannot come across mushrooms or LSD and I have tried messaging some people I think could get them but have not had success Thank you for listening, no one truly understands what we go through everyday

Personally, I wait two weeks after I attain pain free status to do 'the beer test'. If there are any shadows, I don't partake. But, when my cycle is over, I can imbibe all that I want to!

@trjonas, - I take a pretty large dose of zofran each time a half hour before taking mm. -I have never had a rebound headache after mm. My regular headache returned immediately after my first couple of sessions, but I have never had what could be described as a rebound or slapback. I do know a few people who get migrainous headaches after dosing.

I will have to remember that.. in the past I didn't even consider busting, but this cycle that (I think is just winding down) was a real test on sanity. The panic attacks I used to get pretty much kept me from even looking into it, but if I have a life preserver (and I do have Xanax for when I do run into anxiety), it would make it way less stressful.. so between now and my next cycle I think I may start "educating" myself in case I decide to take the plunge! Thanks Bejeeber!

I was unemployed for 8 months after I lost my job. The whole time everything just seemed hopeless. Nobody would even call me for an interview. Finally landed a job. Not a great job but in my desired field. The feeling of finally getting out of that situation was amazing.

Hi there you should consider making your own DMT. It’s honestly very easy to do. I learned everything on Reddit, and bought everything online and Amazon. mimosa hostilis root bark is what you need for extraction. It is legal and sold as a clothing dye. I vape a small amount with the APX volt set @ 2.8v and I can completely abort a nasty headache in 5-10 mins with no rebounds.

Hey Krios, Falling out of CH remission while on the vitamin D3 regimen can happen to any of us. It happened to me in 2015 due to a pollen allergy and again in 2018 due to a mold spore allergy. We've learned a lot since then. The winning course of action to get back CH pain free is to start loading vitamin D3 at 50,000 IU/day, ditch the Benadryl (Diphenhydramine HCL) and start taking 3 grams/day Quercetin. Quercetin is an excellent antihistamine and unlike Diphenhydramine, there's no drowsiness or time limit on dosing. Bumping the Turmeric (Curcumin) dose to 3 grams/day also helps. Don't forget the vitamin C. 1g - 2g three times a day really helps. Stay at this vitamin D3 loading dose for 10 days or until you've experienced a significant reduction in the frequency of your CH for at least 24 hours, whichever occurs first. At that point drop back to a new maintenance dose at least 5,000 IU higher than previous and see your PCP for labs of your serum 25(OH)D3, calcium and PTH. If your serum calcium has remained in its normal reference range and there's no joy as CH beast is still jumping ugly, go back on the loading schedule for another 10 days then shoot me a PM. Take care and please keep us posted, V/R, Batch

Good suggestions from kat'. When you mention the "new D3 regimen," does that include Benadryl? If not, I'd include it. (I think the recommended dose is 25mg four times a day.) For some people, when an O2 tank gets low, it seems to lose effectiveness. "Low" can be 1/4 left, or maybe even more. Higher flow rate seems to help with that (new tank is of course better). Is your pred dose pack a Medrol Dose Pack (the most common kind)? Often the pred levels can be too low in that to really be helpful. Relpax is a pill, right? If it is, I'm surprised that it helps you (but glad it does). Energy shots (such as 5-Hour Energy) have a lot more caffeine than standard energy drinks (such as Red Bull). You can get advice about RC seeds here, if you're interested. Legal to buy and possess in most US states and many countries.

I’d say this fits in “if it sounds good it will work” rationale. It might be in the “what do you have to lose?” Category. Then again “I’m so smart and experienced so do this” may apply. How about “there is no downside so why not?” Most of these things in different modalities or combinations have been tried. The only work that has credibility is the treatment and data Batch has presented. From a strictly science point of view its easy to poke holes in the data but it’s well presented and he has decent follow up. I would take someone seriously if they did half the work Batch has done. In the end we really don’t have any one size fits all answers. My guess is we will find a combination of genetic predisposition and environmental factors are in play. It’s hard to imagine a selective advantage that allowed cluster headaches to survive the genetic pool but someday in retrospect it will all make sense. If it is genetic then I guess we really are all related.