All Activity

Sleeps an interesting thing! Sorry if it was mentioned but how are you measuring, a smart watch or such? Good on you for tracking, super cool what tech can do. This article was published, I’ve only glimpsed the review but based on above you may find it interesting. Not a specific CH sleep study but CH is reviewed in the context of arousal & CGRP. It also looks at microbiome research and sleep. I had this set aside for this weekend to read, will come back and share further thoughts once I’ve digested it. Orofacial pain/headache interlaced to insomnia, sleep apnea and periodic limb movement during sleep/restless leg syndrome: a critical and comprehensive review with insights into social determinants https://files.jofph.com/files/article/20250612-403/pdf/OFPH20241219001.pdf

Hello everyone, I’m reaching out because I’m going through a very difficult time with my current cluster cycle, and I would really appreciate your insights or similar experiences. I’ve been diagnosed with episodic cluster headaches for several years, and my cycles usually last around 3 to 4 months. This current cycle started on November 23, 2024, and now, in mid-June 2025, it’s still not over – which is the longest I’ve ever experienced. Here’s some background: I’ve been taking Verapamil regularly, most recently 240 mg × 3/day since June 7, 2025. Before that, I was on 180 mg × 3/day, and at times I even lowered the dose during the cycle when symptoms improved. During this cycle, I also started microdosing with psilocybin (approx. every 2–3 days) for several weeks – not busting, just very low doses. I noticed that after starting the microdosing, the cycle didn’t improve, and possibly even worsened or extended. I’m still using oxygen as an abortive (which usually works quickly), and I’ve also tried adjusting my diet, sleep, and supplements (D3 regimen, magnesium, etc.). My question is: Has anyone here experienced a significant extension of their cycle (past 6 months) after starting microdosing? Could it be that the low doses kept the hypothalamus “awake” and prolonged the cycle? I’m not sure if this is just a coincidence, or if the microdosing actually interfered. I’m now afraid that this may have caused a switch toward a more chronic pattern. Any feedback, personal stories, or insights from others who went through something similar would mean a lot to me. Thank you for your time and support, Mike

I gave in and finally got back on imitrex (sumatriptan) and immediately remembered why I quit. My doctor 4x my dosage. When I first started taking it years ago it made me sick and I was going through so much I didn't realize the imitrex was why it was happening. This time I was at work and GOT REALLY SICK AND DIZZY. I almost quit taking it on day 3 and decided to just keep going. Now it seems to be effective, reducing the intensity and severity of latent attacks even off dose and all. It's "working" but I'm a bit worried about participating in my busting program (that is also a personal spiritual deal for me) I know at least one thing I use is absolutely off the table because it can cause life threatening interaction. I haven't had an attack in a few days off the imitrex until a light shadow this morning. Took my tablet and it's all gone. I'm wondering, how do you know it's safe to taper off or quit for the time being. How do I know "it's passed" while on the tryptans? This isn't a clean cut ordeal like busting tends to be...

Thanks @CHfatherand @Bejeeber. I'm on Day 18 since my first headache post-op and it's definitely a normal cluster episode....ugh! Appreciate your insights, you both are always a wealth of knowledge and support. I was unaware that epinephrine was a trigger but good to know for future.

Batch has made this recommendation: I buy the bulk powdered vitamin C in 2 lb jar as shown below and stir two level teaspoon measures (8 grams) in 12 oz of water. I drink a gulp of this solution every two hours throughout the day until it is gone by bedtime. This is the least expensive form of vitamin C at 3 to 4 cents/gram. The liposomal vitamin C costs 8 to 9 cents/gram.

I was just considering this actually! After all CH is so bizarre as it seems to just come whenever it wants and go whenever it wants. Has always made me feel like it has a mind of its own or is being possessed by some living thing inside of us....after 19 years of dealing with this I'm open to any possibilities! Lol

Anyone have a recommendation on vitamin C supplements? Most supplements are max 1,000mg and to get 3-5g per day that's quite a bit more. Open to suggestions!

Not sure about TRT but I have read here that people had bad experiences with Cialis and Viagra type medications.

Hey! I know this is an older thread but thought I would add my experience. I've had COVID three times now. First time I got COVID was in June 2022 and it was a pretty bad strain, I was super sick for 2 weeks. During this time I was not in a CH episode, I was actually in the middle of a 2-year "remission" as I sometimes call it. So, no effect. Second time I got COVID was December 2023. The COVID wasn't fun, but not as horrible as the first time. My most recent episode was a LONG one, lasted all the way through April - September 2023. So when I got COVID I was not in an episode of CH and they weren't effected by the COVID. Then another CH episode started back up again in February 2024 and lasted until March 2024. But that's pretty long after being fully recovered from the COVID so I still don't see they were effected by it. Third time I got COVID was 5/10/2025 and it felt mostly just like a bad head cold that lasted about a week. On 5/31/2025 a CH episode started after about 14 months of no attacks. This time I was curious if it had an effect. Definitely worth noting I did also get a dental implant inserted on 5/30/2025. So I guess it's hard to say! Curious to hear other people's experiences with COVID and CH.

Was at the beach fishing on 2 occasions in the last 2 weeks. Whilst there, and even though it was a "Full Strawberry Moon" , I never had any shadows, or even attacks during the 7 hours I was there each time. Strange enough, when I got home, I suffered 7 attacks in a space of 1 and a half hours which I kept aborting. Basically 15 mins apart on both occasions.

Hello everyone! I was wondering if TRT will trigger clusters? My husband is looking into trying it and he wants to know if anyone has any experience with it? thanks!

Yeah it is right? The one I'm using is an Huawei smart watch G2 paired with my old Huawei health app on the Mate 20 Pro Series. Seems to be doing the job. It's amazing that the very 1st REM onset triggers my attack which is usually 1 hour after falling asleep. Yet the following REM spikes doesn't. I'm just trying to get some more research done regarding the sleep aspect as well as why my subconscious stress at midnight is skyrocketing. Try it out brother. Let me know on your findings. Good luck

It is almost spooky. I had the same attack sequence in the nights. I am also getting a sleep tracker. Very interesting

Hi all, I know you probably all know this already, however, aside from these attacks getting me during the onset of REM, I am just curious about the spike in stress levels especially at 12 am. Seems weird. These were the last 2 nights stats. Also whilst melatonin is mentioned to control you from going into REM, there's mixed signals about it from what I have read. It can also send you into the "devils playground". Just fascinating looking at this. My awake times are when I am having the attack. Will continue to monitor.

Certainly all lines up exactly with having chronic clusters, my results simple describe how I am living with them and the results are also 99% caused by them

I still think we are more prone to hedonistic behavior than average as a way to balance pain we experience with pleasure. No....I'm not admitting to a damn thing..... It's merely a theory.

I think it's kept up and running mostly for archived information now. Sad to look back over the posts and see names lost to the years.....

...i waver between thinking these are caused by CH vs being part of the whole package of a "wonky hypothalamus"....

...cool beans Craigo! ...as CHfathers's citation(s) demonstrates, don't be leery of older studies(not that i doubt you!). i distinctly recall discussions and papers demonstrating higher incidence among clusterheads of OCD, smoking, alcohol abuse, and mental health issues, etc...and i'm talking 20+ yrs ago. ..will certainly take this test but just by subhead alone, i know i'll score off the board

....alive but active as a see-ment garden (or pond)

That's some weird, suspect timing following the implant, but even though epinephrine at the dentist is a notorious trigger for some, the fact that the repercussions would typically be expected more instantly makes it sound like coincidence can't be entirely ruled out(?). Also, as you may be well aware, even following decades of consistent behavior, we can still expect CH to pull a change up on us, and start a cycle in a never-before-experienced fashion, such as a slow ramp up with advil etc. abort-able attacks at first. Hate to think it, but I would be bracing for some possible continued ramping up.

Given all the circumstances, it seems very unlikely that this is the issue, but I think it's almost universally true that the anesthetic that dentists typically use, Xylocaine + epinephrine, triggers CH attacks. (It's the epinephrine that does it.) But, among other things, the attacks usually come on more quickly than what you're describing, and of course you've had many previous dental procedures so it seems very likely you would have had the X+e during one of them. I think your next procedure with this oral surgeon won't be for quite a while, but I suppose you could request a different anesthetic just in case.

It is ROLAND SYSTEM 500 and at the time a Moog voyager oldschool plus vx and cp breakoutboxes It can make sounds that scare beasts away but not ‘“the beast”

Try this link https://www.clusterheadaches.com/wwwboard2/index.html Looks to be up