All Activity

hi everyone. I am in a cycle and a few headaches have started with super intense radiating pain in both temples and behind the eyes. Almost like there is something constricting the front half of my head from temple to temple, making the area behind my eyes feel super pressurized. I typically get the more common one sided experience, and these ones do end up phasing over to one side but wondering if anyone has experienced this? Both eyes are also getting super red and irritated. Sometimes the beginning of an attack can feel shadowy in both temples but that is usually a lot more subtle, whereas this is feeling super intense on both sides for a lot longer. After 4 years of 2 cycles a year I am finally getting oxygen next week, really hoping it brings some relief. Thanks to you all and this site for the information and support. I will definitely be relying on it to learn how to use the oxygen. I have had such a hard time finding a doctor who is equipped to help, which I know a lot of us struggle with. Could not get through this without this site!

....hi Daniel...glad you found us! sorry you have to be here...you communicate just fine... ...i have always had an aversion to sharp sounds, but it is quite transitory and non-CH related. however, during a hit i seek silence. not exactly "misofonia"... i've always considered it an inability to handle any more aural and sometimes visual input when fighting the beast.... ...re chronic. i was ECH for 23 yrs and feared...every day...going chronic. then it happened, turned out to be no better, or worse, than ECH...just a different version of CH that was still responsive to the same tools i had learned. my chronic was not daily HA but a non predictable hit sequence, no predictable cycle, BETTER abort efficacy with O2 (with a well earned breathing technique that saved my soul), D3, energy drink to improve O2 efficacy and sometimes effective on its own, less intensity of hits, different and/or reduced triggers. a whole 'nother version of a f'ckn nightmare, BUT not the horror i had feared. IF it happens, you already know how to treat...don't let the fear rule your life.... best jon

Hi Everybody. Daniel here from Denmark. So one year ago I was also diagnosed with clusterheadeache and I am currently in my second cluster. But I am experienceing some other symptoms that what is normaly described also. So normaly I have really bad misofonia (hate of sound) but right now some sounds hurts in my brain. And it has been like this straight for 9 says. Is anyone also experienceing this? And also AI sais that someone with my profile (3 diagnoses) it is the perfect set for my clusters going chronic? Can anyone give me any info about this? This is absolutely one of my biggest fears right now. Sorry for my bad gramma and thanks a lot for everyone of you.

I've come across some research on dural mast cells and have noticed that ketotifen is one of the only antihistamines that has mast cell stabilizer in it. Has anyone searched that rabbit hole yet? It is OTC in most countries but in America it is only in eye drop form and not oral.

One important thing I forgot to mention: I’m very experienced with psilocybin and psychedelics in general. I’ve worked with them many times in the past, including significantly higher doses than the ~2g I took recently. So this was not an impulsive or recreational decision for me, but a very conscious and careful attempt to manage my cluster episode based on previous positive experiences. I just wanted to clarify that because I mentioned microdosing before and realized the 2g dose might sound contradictory without context.

Hey everyone, I’m a 30 year old male from Austria and I’ve been dealing with cluster headaches for the last few years. My first cluster episode happened around 3 years ago, the second one about 11 months ago, and now I believe I’m entering another episode again. Usually it starts with a strange pressure/sensation around my trigeminal nerve area and then develops into full attacks. I already had one attack a few days ago and since then I constantly feel that familiar “shadow” feeling on the affected side. A bit about my background: I struggled with severe addiction in the past (opioids, stimulants, alcohol etc.) after losing close family members very early in life. I’ve now been sober from my old drugs for over 3 years and I’m currently in medical treatment and substitution therapy. I’m also prescribed benzodiazepines at the moment while tapering and stabilizing. Despite all that, cluster headaches are honestly one of the hardest things I’ve ever experienced. A few days ago I decided to work with psilocybin again because I had positive experiences with microdosing during previous episodes. I took around 2g in a very safe and intentional setting and I honestly feel like it interrupted or weakened the episode, but I’m not sure if it completely stopped it. I’m currently planning to continue carefully with spaced doses every 5–6 days if necessary, while also using oxygen therapy as soon as I get access to it again. I would really appreciate hearing from people who have experience with psilocybin for clusters, especially people who managed to interrupt an episode before it fully escalated. Also, English is not my first language, so I apologize for any mistakes. I also hope I didn’t accidentally say anything against the forum rules. Much love to everyone dealing with this condition. Cluster headaches are truly brutal. Greets, Janosch

There's this, with Gammacore. The problem has been (and probably still is) that it is very expensive: Hemicrania Continua and Paroxysmal Hemicrania Treatment. I would PM Batch (his handle here is xxx) and ask him whether he has any experience with vitamin D3 and hemicranias. There are other alternatives. I'd google [new treatments for hemicrania] or something like that.

I forgot to follow up on my earlier thread, but thanks in part to @Dallas Dennyand @CHfather, I've been working my neurologist to explore the possibility that I actually have hemicrania continua rather than cluster headaches, and that seems quite likely. He put me on 50 mg of indomethacin twice a day, and after a week of some relief (not complete, but definitely more than the oxygen or triptans) and minimal side effects, I'm now up to 50 mg three times a day. I'm very grateful to say that I haven't found the indomethacin as intolerable as I'd feared, even though it feels like this is still a much lower dose than I'll need to fully get on top of the pain. I know this is a forum for cluster headaches, but I can't seem to find any better place to ask, so if anybody knows of any hemicrania resources, I'd be immensely grateful. I'm not even sure what to really expect, honestly--whether it's even reasonable to hope that this pain might ever go away, or that I could ever lead a functional life again. Until the last couple of days, I'd been able to not dwell on the possibility of this being a problem for the rest of my life; but now that I'm in another emotional rough patch, that creeping sense of "this will never end" is increasingly weighing me down. Maybe higher doses of indomethacin will eventually get this under more control, and maybe it's just a matter of continuing to be patient, especially since I'm only two months in (and it seems the standard for hemicrania is that it lasts at least three). But even though the pain has slowly gotten a little better from week to week, the mental toll is brutal.

Many (but not all) people find that staying on the O2 (often at a lower flow rate) for 5-10 minutes after an attach has been aborted will help reduce the number of subsequent attacks. If you have the M tank that is about 3 feet tall, it has a capacity of 3455 liters. That would mean that theoretically it would last about four hours at 15 liters per minute. Usually there's a point when even if there's still O2 in the tank, it just isn't getting the job done, so figure about 3 hours/M tank at 15 lpm. You should be getting aborts in less than ten minutes. Some research shows that abort times are longer when people are just getting started with O2. Many people like to use just the mouthpiece with the ClusterO2 Kit. A typical breathing strategy is to start with a deep exhale, then a full inhale, brief hold, big full exhale, and so on. Others find other methods that work best for them. The flow rate you use should be such that the bag on your mask is always full when you are ready for your next inhale.

...me too

Thanks @CHfather and @Mordecai ! Can't tell you how much I appreciate your help and being here. Didn't realize you had replied. Meanwhile, I managed to get multiple big M tanks yesterday from Lincare, and the good mask specifically for clusters online. Used it to abort one last night, after some fiddling around with which mouthpiece to use and how to breathe. A total game changer. Seems like it would be easy to go through even one of these big tanks every couple days if you get multiple attacks nightly. I guess if I am in this for the long haul, I should figure out what a demand valve system is. Much to learn...

Hey I resemble that remark.

It might be possible that a big medical O2 supply company would be more likely to have big tanks, not just e tanks. I'm pretty sure that Airgas and Lincare serve @Clairmon's part of Virginia with medical O2, and Airgas will also have welding O2.

Dr Young down at Jefferson has been good for me. He is also a supporter of this site and attends the conferences. Him and his team will work with you well if you tell them your a member here. https://www.jeffersonhealth.org/find-a-doctor/y/young-william-b

Send me a DM if you need to chat

Life gets the best of me and I forget to reply back to you wonderful folks! : ) @Clairmon - what @CHfather said, my prescription said, “Home Oxygen - 15L/min - non-rebreather, as needed for CH” Take that to your local home medical supply store and see what they say. Let them know you will pay out of pocket without insurance. Once they had my card on file it was done - local manager didn’t care why corporate was saying. As long as they knew they were getting paid. I even perform the drop offs and pick ups. Now, I just walk in, with the tank/s, I have two E size tanks, and let them know I need new ones and they bring them out and I sign a paper and im off. @FunTimes and @CHfather thanks again! Also, thanks for the tips on cutting the strap off and closing the air vents on the mask!

@Clairmon A prescription should read something like "Oxygen therapy for cluster headache: Up to 25minutes of 15 liters/minute with nonrebreather mask." (A doctor would probably use some abbreviations here.) It is usually then faxed to a company that supplies medical oxygen. You would then call that company and make sure they are bringing you the right stuff (big tanks, regulator, NRB mask). You will probably want to switch out the mask and regulator at some point. Writeup here about welding O2: Notes about welding O2 - ClusterBuster Files - ClusterBusters

The regulator will depend on your tanks Tank Compatibility: E-tanks generally use a CGA-870 yoke connection, allowing for easy, tool-free connection. M-size tanks often use a CGA-540 threaded connection, although smaller "M" series (like M6, M9) may use CGA-870 You can find them online at sites like Amazon or ebay. You will want a flow rate that runs up to 25LPM

Took the D tanks but the vape pen bailed me out more often than the tanks. It is a pain to lug the tanks around but it was not that big of an issue getting them past the security at the port.

October 8 - October 11 $150.00 We are very excited to celebrate our 21st U.S. Conference with you. Join us for this long weekend of support, education, and community in Rosemont, IL, near Chicago O’Hare Airport. Check out the event page for information about scholarships, tickets, programming, and accommodations at the Embassy Suites by Hilton Chicago O’Hare-Rosemont This is a great opportunity for those living with cluster headache to connect about shared experiences in safe spaces. 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! Here’s what past attendees have shared about their experiences: “You need to attend. To find that you are NOT in this battle alone has such a positive mental impact. Whether you are an 18 year sufferer or a new sufferer, the community is loaded with amazing people. From doctors to care givers, the information and support that is available is the best in the world. The experience will be irreplaceable.” “I was hesitant at first…just another conference. BUT this is different. If you have CH, it is a must go! Meaningful, educational, helpful. Offers hope and support.” “I wish I understood the value and found this years ago. I only thought CB was a bunch of odd people in the forums, I had no idea how organized it was. The forums are helpful and a great resource, but connecting with people in person and realizing how much this group wants to help others changed my perspective.” Agenda and more details coming soon! Check out more information here: https://clusterbusters.org/event/clusterbusters-21st-annual-us-conference/

Mordecai, I am in the same boat as you and the same area. Live near Purcellville in Western Loudon, first time getting a proper diagnosis but third time going through an episode of what are usually monthlong clusters. Maybe we can talk, seems like you would have good specific advice for me? My doctor is willing to prescribe Oxygen but not experienced, I'm his first CH patient, and he doesn't know how to work with an oxygen supplier. Any advice? I am also more than happy to just buy welding or pilot oxygen if someone can give me the link to the right regulator to put on it and reassure me it's fine. Adding insurance paperwork and hoopjumps to something you are highly motivated to get done quickly never seems smart. Appreciate everyone here, this group seems like an amazing resource. I am really going through it right now, and it sucks to know you all are too but is good to share stories and info.

It's interesting, because over the years I've tested so many different hypotheses and looked for trends to try to figure out a way to minimize attacks, and almost across the board none of them ever work. Reading your post I thought, well maybe I haven't given "getting extra sleep" a chance. Which is a weird one to latch onto, because it's basically the one that I know with probably the most overwhelming evidence is what will give me an attack; and that's taking a nap. Sure enough, I read your post yesterday and then today decided "I'm going to take a nap, because I'm absolutely exhausted." 45 minutes later and I'm on the floor with a 9/10. All that to say, I'm glad you found something that worked. At least for one cycle, because it's better than nothing. This is coming from someone who hasn't had luck with the vitamin D protocol (although I still do it), hydration, diet, exercise, other supplements (benadryl, melatonin, etc), and RC seeds.

any update on effectiveness and your cycle?

Thank you for this

Back after a 5 year remission. Can anyone recommend a CH Doctor in the Philly burbs (Montco)? The list needs updating. Dr. Azkenazia in Doylestown is no longer in USA. I’m glad ClusterBusters is still here! This forum is so helpful…with knowledge is power. Thanks!