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Ummm yeah, I reckon I'm up for the 80 mile drive to hang out with a bunch of clusterheads!!

MountainAire Medical Supply in Grand Junction, Colorado, came through for me. Unfortunately the mask provided was a joke, so I've ordered the mask system that is available on this site. First night I needed to use oxygen and even with the funky mask, it worked wonderfully to abort the headache! Yay! After seeing the tanks, regulator and mask, I have no idea why the other places were giving me the runaround. One place literally said the regulators were hard to come by so they were saving them for hospice patients. Doesn't make sense. It might be because I wanted to self-pay because we're out of network for my insurance. We've found with other medical procedures that entities get a lot more $$ from insurance then if a patient self-pays.

...old saying...Dr B i believe: if you are not sure a med is working...it's not! but, when you say "cans" it sounds like that faddish and worthless "Boost". you need at least 15 lpm, a proper non rebreather mask, and a breathing technique that works for you. at best an O2 abort takes 5-8 mins...a boost can gives less than 1. you ALREADY got the breathing technique which is a highly effective one for many and the type advocated by the expert on O2. get thee some tanks (not a concentrator) for pure oxygen. and to paraphrase @CHfather, if the O2 doesnt work its one more diagnostic clue to rule out CH. it sounds to me that either you have a very odd type of CH or one of the others he mentions.. best jon

CLUSTERBUSTERS 20th ANNUAL U.S. PATIENT CONFERENCE September 11-14, 2025 We are very excited to celebrate our 20th Anniversary Conference with you. Join us for this long weekend of support, education, and community in Grapevine, TX near Dallas/Ft. Worth. Check out the event page for information about scholarships, tickets, programming, and booking a room at Embassy Suites by Hilton Grapevine DFW Airport North. The agenda and more details about the conference will be shared soon. This is a great opportunity for those living with cluster as well as caregivers to socialize and connect about shared experiences in safe spaces. Saturday’s dinner and award ceremony theme will be the Roaring 20’s for those who choose to participate. This conference is also appropriate for Healthcare Professionals who want to learn more about cluster headache and obtain CMEs for their education. We hope to see you there! For more information and to register: https://cbdallas2025.planningpod.com/

I'll be there. My wife has volunteered to work/help, but she hasn't heard from anyone yet about that. Anyone know who we'd contact to see if we need to arrive a day or so in advance?

I was just planning the trip, hotel reservations made and watching flights. We will take the opportunity to explore more of Texas beforehand.

Last year was my 1st year attending. I had never met anyone with CH before that conference. It was great being around everyone. I learned a lot and hope to attend again this year !

...just remember, one must ask politely

@Drew28, you're not actually the first person here to report that some form of sex helps abort attacks. As I wrote in a post a few years ago, "Some people have reported that sex stops their attacks. Other people have been amazed that it’s even possible to consider sex during an attack." As jon' says, oxygen will get you the same results more reliably, if not maybe as enjoyably. With your relatively infrequent and relatively short-lasting cycles, though, I can see that maybe you would just go with what gets you off through them, but on the other hand (so to speak) you did do that vegan thing, so I'd suggest that you look over this document and consider what might be helpful. The D3 seems like a no-brainer for long-term effectiveness, and oxygen maybe for aborts. Basic non-busting information - ClusterBuster Files - ClusterBusters

Yes, I do have a Rx. The first oxygen provider from Blanding, Utah, brought an air concentrator to the house with a canula and said they couldn't provide up to 10 liters flow/minute. They kept treating me like a patient with lung issues. What a disappointing experience. I spoke to others on the phone who said they were unable to go up to the 10 liters per minute I needed, and when they did have the supplies they reserved them for hospice patients (LinCare and Alpine Air in Price, Utah). But, I just got off the phone with MountainAire Medical Supply in Grand Junction, Colorado, and I think they're going to set me up. When I called, the lady on the phone knew immediately what I needed; how refreshing! They have the regulator to rent but also suggested buying my own to save money. Now I'm waiting for my neurologist to send them the Rx. Fingers crossed!

All you need is a provider for the tanks, you can buy the regulator you need off Amazon for under 30 bucks...... If you are looking for an O2 supplier to rent you a high flow reg, you will look a long time. Most of them don't even know they exist.

While “planning on” attending doesn’t always thoroughly guarantee it will actually happen, Jeebs (staying true to form and referring to himself in the third person) plans on attending! Psssst....I have to whisper this, but last I heard, Dallas Denny is rumored to be making plans to attend also...!

Hello, new here and first post. I started getting cluster headaches when I was a sophomore in high school. I would get them every day in 4th period during my first ever cycle. Fast forward 17 years later, I usually go into my cluster cycle every 2-3 years and that cycle last about a month. it’s sounds super weird when I say this, but when I feel my CH creeping from the back of the neck to the side of the head. I’ll hop in the shower with the lights off before it hits the eye. When it starts to hit the eye, I’ll masturbate in the shower. And after I am done, it shoots the pain away from the eye and to a VERY tolerable pain back to the side of my head. And then I’ll sit in the shower for another 10 mins and my cluster headache will be done. If I get woken up by one and the pain is already at the eye, I go straight into the shower and do that. sounds crazy, sounds perverted… I know. This isn’t someone trying to be funny, I have had to be rushed to the hospital during an attack because I was in so much pain. I went vegan for a year after that attack because I read that it may help prevent cycles. But this home remedy works for me. My ex in the past who suffers from bad migraines. On our 3rd date we were talking about our headaches and I told her my trick and she was like “hilarious because I do the same thing for my migraines.” don’t knock it until you try it.

Oh for pete's sakes! This one takes the winner winner polish sausage dinner? Glad your still around @jon019! Thanks for the much needed chuckle!

Fair play to you, I defo don't have sex on my mind when under attack but my just ask the wife to do me a favour next time I get an attack, God if this takes off,us cluster heads will be known for being druggies and sex pest, can you imagine walking down the street getting an attack and just asking a stranger to jack you off,

I got one of these. I’m in the UK so it doesn’t cost me anything on the NHS. I am hoping it does the trick but haven’t seen many people saying it helps. Cycle is due soon so will update (unless it just doesn’t come this time which would be better!)

...OXYGEN.....

@MiloS, thank you for this input! I think virtually everyone here would recommend that you start on the D3 regimen right away. It might or might not help during this cycle, but it will help you with future ones if you stay on it. D3 regimen - ClusterBuster Files - ClusterBusters And split those triptans: Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters And maybe try a 5-Hour Energy or some other energy beverage as you start with the O2. This speeds up aborts for many people. Consider the mask made for CH that many people say shortens their O2 abort time by 10% or more. ClusterO2 Kit - Clusterheadaches.com - Online Store And at least keep busting as an option (click on New Users - Please Read Here First in the blue banner at the top of each page).

All interesting !! I've just started my 7th episodic CH cycle. I get every 2 years like clockwork. 6 weeks to 20 weeks. I have tried many things. I completely quit drinking, and managed to skip a cycle. Well .. here I am with another failed hope. At least I'm 4 years sober, and off all the narcotics I was doing on my downward CH depression spiral. Here is what works for me: O2 is always my best cure!!! Once I feel it coming on. (Eyeball pain, then temple, then jaw, then left side of neck) Starts mild, but I normally have about 20 minutes before I'm in full blown can't bare it pain attack. I rub Vicks vapor rub on the temple, jaw, and neck. Then 15 ppm oxygen. Boom!! Within 5 or 10 minutes. It stops. Most times before I am in the unbearable part. I don't know why, but the Vicks works great!! Even by itself sometimes. Very hot, warm wet towel over the affected side works also over the Vicks. Sometimes O2 isn't available, so I have learned these neat other busts. Especially from these forums. Sumatriptan shot works great, but really shouldn't use more than 3 times a week, and have extended my cycles if I do use it alot. Varapamil 3 times a day for a few weeks has still won for my shortest cycle period. I hope this helps someone. I really didn't understand why the Vapor rub works, but after reading this discussion bout the histamine stuff, maybe there is something to it. Who knows. I have never been down so many rabbit holes about anything in my life like I have with the CH. The how, what, and why's. I appreciate you all, and sympathize with you all. It's a brutal disease. We all gotta live with it, and there are ways to cope. Ya just gotta find what works for you I think. It can be managed, ya just gotta believe it!! Life is good!!!

Sorry to hear this but you should do a little more investigating. What things do you notice about your headaches? Same time every day? Same location? Anything trigger them like smells, foods or drink? Alcohol is a big trigger for most, can you drink a beer and not have your headache set in? What are you currently doing that successfully relives the pain your having? What type of doctor told you this and have you had a second opinion? If you do have Clusters the D3 and Oxygen are a great start to battling this and I would get on both as soon as you can! Poke around the site and ask as many questions as you have. Use the search bar at the top of the screen and if yo can think of it someone here has probably tried it and talked about it. We are a good group of head bangers here and willing to help out, as a group or in some cases one on one, anyone who is trying to help themselves

Couple more.... https://www.amazon.com/Ever-Ready-First-Aid-Regulator/dp/B08J174TP5/ref=sr_1_2?dchild=1&keywords=0-25%2BLPM%2BCGA870&qid=1607641221&s=hpc&sr=1-2&th=1 https://www.amazon.com/ResOne-Regulator-CGA-540-MR540-25B-Adjustable/dp/B0CQDBC2HR/ref=sr_1_4?crid=2QYEUHX23GXC1&dib=eyJ2IjoiMSJ9.oKBh0KlatGfqNTbgJbxBnQh9QTrxp80VJAEr-xCQNpMmfWmLaoXZFg370X98qOV96c-kmFJxZ0zjqRj7kvmnr2TZxaEKh8IaWN55CNOwtBqEfJT1MqVJBVHKG8dowLjhmwg0llt6zkFkDOQetC8CLIEnQU7inaT4tMuL_vQkRSF3MRigni7ygyh8bV6zdC2bKJ8atwCe3QFEmCLc9KO1Bl_PmLycnBqgZ1nZ42Kh0IkoYSgvXxw1HqXw-mDZFxp_olA9f51-8f9tlenyediN4e1KsKsL_dgsSTAXxQRR3ka-zug2gnjyZ0RrpUTWqoccRWNp6_5xCZUvvA3bnFt1fzN_FQ9XaQBsFjA1863R45k.qjHFLtlv4JkM0LLF-LKWLE-FSWku6Sfk6hdiJsdZ79c&dib_tag=se&keywords=25%2BLPM%2BEMS%2BOxygen%2BRegulator%2BCGA-540&qid=1739312002&s=hpc&sprefix=25%2Blpm%2Bems%2Boxygen%2Bregulator%2Bcga-540%2Chpc%2C89&sr=1-4&th=1

Here are links for regulators I have gotten, You can find them for a better price on amazon or used on ebay sometimes also Larger M60 and M tanks use the CGA540 Oxygen Standard Body Click Regulator CGA 540 From WT Farley Smaller E tanks use https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator

You were having 10-15 headaches/attacks each day? How long did they last? This is a very confusing to me, because it is extremely rare for someone with CH to get so many attacks. It is much more typical of a different condition that has symptoms similar to CH, such as episodic paroxysmal hemicrania (Chronic paroxysmal hemicrania - Wikipedia) or SUNCT (SUNCT syndrome - Wikipedia). I'm not sure what you mean by "individual cans." Do you literally mean the small cans that contain oxygen -- such as Boost Oxygen? Or do you mean a large tank or a cylinder that has oxygen in it? (If you have SUNCT or paroxysmal hemicrania, oxygen usually doesn't help.)

If I catch it as soon as it starts and rub it on all the areas that I feel being affected sometimes I turn my neck to the side to give the C2 and C3 joints the relief, and lately I use like I said the antihistamines oh yes, all of that together can definitely abort the headache, but before I used the antihistamines I was just using tiger balm and it would significantly bring my pain downand give me a lot of relief.

Hi so as far as the Pepcid it was more of test at first but I noticed the first 24 hours my symptoms reduced more than half so then I went to Benadryl. I sought out over the counter medicine that had the highest antihistamine so that’s why I went with the Pepcid first. I find the Benadryl has worked for me also and yes, it is a preventative measure. I noticed when I started taking it my brought my headaches down to 10 day a day. As as the tiger bomb goes, when I start feeling the onset that being pressure throbbing pulsating on my left temple, I apply it ALL areas I feel anything lol… when I do that it does what it’s supposed to do, which is to confuse the nerves. If I’m awake and apply the tiger bomb that usually allows me to stop it and to control intensity and usually if I can do this, I can stop the headache altogether now usually So holding my head to the right stops the pressure I feel in my neck and gives me a lot of relief, so when I feel it I turn my tech until I feel relief and when I do this I can feel the relief immediately so with the cluster headaches being associated with your C-2 and 3 joints it made sense, it feels like it stops the pressure altogether so sometimes I have to hold my head completely down in between my legs and other times I just take my head and hold it to the right side that combined with pulling my left shoulder down it gives me a lot of relief so the combination of tiger bomb as soon as I feel the onset, with holding my neck to side and using antihistamines as far as pain is brought my headaches down from 10 to 1-3 a day. As far as me being able to control the number of attacks that I have during the day is brought it down to 15 + to 5 a day. Now ans far ans the oxygen, I don’t think that the oxygen really helps me. I have the individual cans. But when I try different breathing exercises like deep controlled breathing and also dragon breathing it helps me out a lot. The D-3 I just started taking 12 days ago weeks ago because I’m in the middle of an attack now. I started taking the antihistamines first and that’s when I noticed the significant change. Yes I have tried everything. Last year is when I first noticed holding my neck to the side gave me relief and my boyfriend broke his back so he swears by Tiger Balm and one day the pain was so bad I finally gave in and used it and it INSTANTLY gave me ALOT OF RELIEF. I even gave it to my friend that has tension headaches some and rubbed it on her head when she felt her headache coming and it stopped it completely! So yes I swear by this stuff now, I’ve went through 3 jars already this attack cycle. I really hope this helps

Going on my 10th year as a Clusterhead this 2025. Always been a lurker in the shadows (no pun intended) Figured I'd actually join a forum and involve myself more. Just wanted to say hi, and thank everyone over the years for sharing their experiences and advice. I have learned more from the community than my own doctors and medical professionals. I know how alone and isolating this condition can feel and decided I should network more, So hey /wave

..LC...as the saying goes...we hate the reason you are here but glad you found us...welcome. best jon

shaydaymayday, I don't know anything about pepcid, but thanks for posting. I'm sure many people know a lot more than me that might be able to duplicate your test. Cheers, J

I don't know if this can help Mike but I hope so. I was desperately trying to find a preventative that would work for me. I tried Emgality for 7 months and it just was not effective at all for me. I don't have anything bad to say but sadly it didn't help me. I had thought verapamil didn't work when I had stopped it at 360 earlier in my journey. I later read a medical paper that the therapeutic dose for chronic started at 480-600. I than started verapamil again and found 480 did help a small amount and was over overjoyed. I am on 720 (240 every 8 hours) currently and have nights now that I sleep. I still have attacks mostly at night but not every night. Perhaps a higher dose of verapamil may help you. Your doctor may find this is appropriate to try ? Good luck Mike

I very much appreciate this report, and as you say, it probably couldn't hurt for people to give it a try. It's wonderful that you have experienced this relief! I will say that you are far from the first person who has reported here on trying CBD, and some have indeed reported good results -- though not a "cure," which is not a word we use here lightly, and surely not until at least a couple of years have gone by. If you (or anyone else reading here) want to see past reports related to CBD, just put CBD in the search bar located at the top of each page (here's an example: https://clusterbusters.org/forums/topic/5581-cbd-i-know-i-know-but-bear-with-me/#comment-56361). Of course, it is possible that through your research you might have hit on just the right oil and/or just the right dosage and/or who-knows-what other "just right" thing that gets it all aligned. If you don't mind, I have a few questions/requests: Two questions here: (1) Did you continue dosing with shrooms? (2) Would you point me to one of those videos you mention, making that specific recommendation ("small micro dosages of 0.4 grams every 3 to 4 days")? As the first site specifically created to encourage/help people to use psychedelic substances to treat CH, we try to keep track of what people are saying out there about how to do it, and I have not seen videos making this recommendation (which is different from what we have learned here about the best way of treating CH with psychedelics). As people here know, I like to dig into the research, so I have the same request: Would you be kind enough to point me to one of the studies you found showing this deficiency in people with CH? I have tried googling, and I have found research about hormones lacked by people with CH (one study, for example, says "CH often show accompanying neuro-endocrinological changes such as a blunted circadian rhythmicity of hypothalamically regulated hormones including testosterone, cortisol, growth hormone, thyroid-stimulating hormone, prolactin, melatonin, follicle-stimulating hormone, and luteinizing hormone..."), but I haven't located anything about endocannabinoids and CH.

You’re so right that the results have to come from the forums, as the results of the med trails are always statistical and most of the times not first hand by trail participants. I’ve been in the Aimovig trail in 2019 and Emgality trail in 2020. On both occasions trying to break my cycles as the meds (verapamil, naratriptan, sandomigran, prednisone, D3) I took were not sufficient anymore while the beast was jumping very ugly 8-14 times a day with kip 8-10 very often. I had 5 rounds of Aimovig and it did not break my cycle. It was only when I upped my verapamil from 600 to 720 that I noticed in hindsight brought the relief of ending my cycle. Aimovig had no side effects besides a minor obstipation. The Emgality I took last year also did not break my cycle, in fact this cycle started last year June and is still ongoing now for 11 months. I do not contribute that to Emgality, I believe the beast wants to ‘play’ with me a little longer than normal. I have to say that in my current cycle before I used the Emgality I had the GON injection which also has zero effect, but also no side effects. From the participants in both trail groups I understood that 4 of of 10 had positive results, their cycles did not start. Saying this, my observation is that those CGRP medicines are not meant to break cycles, it is to prevent them. Once in cycle there is little one can do apart from having your rescue meds on stand by and try to ride it out the best you can.