All Activity

O2 is the life saver,

It's great that you got that relief, Mike. Do not let it lull you into letting up on getting oxygen! For a lot of people, the effectiveness of energy beverages tends to decline with multiple uses. (Incidentally, the smaller "energy shots," such as 5-Hour Energy, are easier to get down fast and have as much of the CH-fighting ingredients as the larger drinks (more of those ingredients, actually). Also, at least one person here has had success with V-8 energy drinks, which might be a touch healthier.) Many people would be surprised that your triptan pill helps at all (it is reasoned that they take too long to get into the bloodstream). If your attacks are predictable, some people will take the pill before the attack hits. There are a lot of other things I think you might benefit from knowing. The D3 regimen, for exampIe, and busting. I think you might benefit from reading this: Basic non-busting information - ClusterBuster Files - ClusterBusters

Hi everyone, I'm a long time lurker here. I'm 55 and have been suffering from Cluster Headaches for almost 20 years. I typically enter a new cycle every two years or so and they tend to last for 6 to 10 weeks. I am currently in my third week of a new cycle. I usually use Sumatriptan (100 MGs) to deal with category 10 attacks and just got my new prescription yesterday but am a little hesitant to use it because during my last cycle I think I may have overused it and made my cycle even worse and longer. I have never used oxygen but I am trying to get that now. In the meantime, like the rest of you, I would be willing to try anything to end an attack. In recent years, I have seen that some people have had success with Red Bull but I never tried it. I have never even had one before as energy drinks just aren't my thing, but last night I bought a few of the small/standard size cans at a gas station thinking I had nothing to lose. When I got up today, I had a shadow pain in my left sinus but it wasn't that bad. I figured it would pass within 10 minutes. I was wrong. In the span of about five minutes it escalated to a full-on attack. Pain level 10. I grabbed the Sumatriptan I just got and was going to take one but something in the back of my mind said - Try the Red Bull first. I opened a can and drank it all down in three gulps. About ten minutes later - ZERO PAIN. I am absolutely amazed. It was as effective as Sumatriptan and worked more than twice as fast. I wish I had tried this years ago. I realize that not everyone has the same success with each method, but I wanted to post this to let others know in case they want to try Red Bull as an alternative. I am positively stunned at how effective it was for me. Wishing you all a pain-free future. All the best. - Mike

Let me add that I use Emgality, though with little to no relief....sorry forgot to add that one in. There's so many....

Hi All - I'm new here, but have had Clusters for almost 27 years. In that span I've been able to handle or abort them using every published treatment available to include: Imitrex, oxygen, other triptans etc.... for breaking cycles (sometimes successfully and sometimes not) prednisone, magic mushrooms.....and for preventing - verapamil and forgot the name but it's an epilepsy drug. A few days ago, I was prescribed Brekiya, an injection of ergotamine or DHE. Does anyone have experience with this and if so, how fast does it work? I'm having the worst cycle ever at the age of 60 and I'm at my wits end. Any plausible ideas on relief from anyone would be extremely welcomed. Thanks all!

Hi,Andrew. I'm from Japan and I’ve also been suffering from chronic cluster headaches for over 10 years. I’ve tried all the medications that were mentioned, and I’ve even undergone nerve blocks and trigeminal nerve surgery. Although I’ve been managing the pain with opioids, they’ve started to lose their effectiveness, and that’s when I came across this. It seems that Humacology’s CBD oil is also available in Japan, and I wanted to check if the following product is the right one. Formula No.3 Broad Spectrum Oil 34% CBD content: 7,500 mg CBN content: 1,800 mg CBC content: 600 mg CBG content: 100 mg Net volume: 30 ml I would really like to give it a try. I’d really appreciate a reply. Miho

Hi everyone. Dr. Haghdoosts presentation from Sunday evening is below. If you had any questions or insights you'd like to share that may assist in their study design, you'd be welcome to place them as a reply below and I could email them once collated. Thankyou.

@Darryl Lang did you find out why your Vitamin D level is high?

Hi guys. A heads up this Sunday I am privileged to host Dr. Faraidoon Haghdoost via live webinar who will share insights from his recent work in cluster headache research. During the session Dr. Haghdoost will discuss his recently published 2026 study exploring patient perspectives of cluster headache in Australia and provide an overview of the upcoming PEACE trial investigating psilocybin based therapy as a potential treatment for cluster headache. This is an opportunity to hear directly from a researcher studying a treatment approach long recognised by our community. Sunday 22 March New Zealand 6:00 PM NZDT Australia 1:00 PM Perth 3:00 PM Brisbane 3:30 PM Adelaide 4:00 PM Sydney / Melbourne / Canberra / Hobart Register and watch live: https://streamyard.com/watch/eRh3FsriH3x7 Pre-read the study being discussed: Patient perspectives on research gaps in cluster headache https://pubmed.ncbi.nlm.nih.gov/41562498/ More about the PEACE Trial (The Psilocybin Efficacy and Acceptability on Cluster headache Episodes) If you have a question you would like Dr. Haghdoost to answer regarding the above, or feedback, he is very receptive to input from the community. Please send your question or feedback to craigedstewart@gmail.com or submit anonymously here: https://forms.gle/k46Vz5CZigTRn8MJ8 and I will make sure he receives these ahead of time so they can be answered during the presentation. I imagine there are hoops and lengths Dr. Haghdoost and his team need to jump through to get studies like this across the line so I am doing this to help raise awareness and hopefully he will be able to recruit enough participants and garner enough insights from our community to give the study the best shot. Everyone is welcome - if you are interested but do not live in Australia or New Zealand and can accommodate the timing, you are welcome to register and join. Also I will try and make sure it is recorded and shared after. Thanks everyone.

Hello I am an Illinois resident and a CH sufferer. I want to connect with a community of cluster busters to feel supported on this difficult journey.

Thank you, fingers and toes crossed for you, and please do update.

I’ve just started taking this 2 days ago. I know it’s anecdotal at this point but I’ve been in a cycle for nearly 10 months now. Nothing is helping d3 , mushrooms everything. my doctor here in Canada gave me a 30 day trial and so far it’s really helping. I’ll update soon

..

Yes, this is also a pet theory of mine. My husband has ECH and had a litany of trauma growing up from alcoholism and drug addiction in his parents, physical abuse, homelessness after leaving his home early, death of friends and close family as a young man. I just finished The Mindbody Prescription book, which is primarily about repressed rage and grief, and how it will present as pain in the body as a way of distracting the mind from its subconscious feelings. But what's more, it is absolutely possible for the limbic system to form neural pathways to the hypothalamus and cause autonomic dysregulation.

That’s actually something I’ve been curious about too. Even if herbal cigarettes are tobacco-free, the act of inhaling smoke itself can still be irritating and potentially trigger attacks for some people. Cluster headaches are often sensitive to strong smells, smoke, and changes in oxygen levels, so it wouldn’t surprise me if they could exacerbate symptoms. From what I’ve read and heard in similar discussions, many people with cluster headaches tend to avoid any type of smoke altogether, just to be on the safe side.

Thank you

I must of missed them, I've had 20-25% results with busting, I'm on the D3 regime all the time, I thinks its just good health to be anti-inflammatory, I also intermittent fast to keep inflammation and insulin spikes down. I tried a 96 hour fast at the beginning of this cycle, and so far I think its reduced overall attacks. I'll try anything during a cycle. But once its gone, I rarely even think about it.

One thing that many people have noticed is that when the tank gets below a certain level (half-full for some, one-third full for others), O2 loses effectiveness. With a regulator that goes above your usual level, you can increase the lpm to compensate for this. You didn't answer about D3 and busting (perfectly fine), but I'll just repeat that they make a big difference.

Jetpack Compose + Material13, Language Kotlin. I build in Antigravity.

I'll check that app out in the next few days. What framework is it? Also the iPhone thing I can relate to. That is why I usually stick to a web app so both android and apple are available without needing to build two apps but thats just my preference.

I hadn't loaded all the the data into the app yet, I only had a few actual live runs with it where O2 was logged, and then I was back loading attacks so that I could see a complete cycle. When doing so I realized that the past logged events didn't include O2 usage so it through the stats off. I fixed that, in the latest update. The new Stat averages 19.61 min per attack or 922 Minutes over 47. I had also corrected the calendar issues, added edit ability to past attacks (sometimes I forget to hit end) I'm just so happy its over. We already had the JSON export, but I added and tested an import in case you switch phones later, you can export out of current phone, load app in new and re import. No data loss. I ended up hosting it on Github as then when I push releases or add on's people can just update. There is also good notes on what app is all about along with ability to audit the code if your inclined. For $25.00 I get get it listed on the Play Store, something I might consider to get it to a larger community after I get feedback and see if this is an app people will want to use, then updates will be automatic. I did look into optimizing for Iphone, I figure it would take me an entire weekend (personally I am not a fan of Iphone) but I may consider it if like I said there is enough interest. Good news is that I will not allow advertising or charge a fee as I consider this my contribution to the community. https://github.com/MyDigitalFreedom/ClusterTracker/releases As far as optimizing O2, I can't say that I have been overly successful, What works one day, doesn't the next, as many know this beast just changing. My old manual records were harder to see any patterns. I'm hoping with the graphs I will get more insight.

ios swift app

Herbal cigarettes may be tobacco-free and nicotine-free, but they still produce smoke when burned, and that smoke can irritate the airways and potentially trigger coughing, wheezing, or asthma-like symptoms in sensitive individuals. “Herbal” does not automatically mean safe for the lungs. If you’re curious about the types available in the market, you can explore this list of herbal cigarette brands. However, even these product can still cause repiratory irritation, beacuse the main issue is the smoke itself, not the tobacco.

@Trent, I remember from some years back that you gave a lot of thought to optimizing your O2 usage, and you were dealing with some Canadian restrictions on equipment. An average attack duration of 44 minutes seems too long, and a total O2 usage of 45 minutes over 16 attacks seems quite low, so I'm curious about what's going on, and of course I am also curious about whether you are doing the D3 regimen or busting, both of which typically reduce attack durations. Since this isn't really the subject of these posts and you aren't asking for any advice, you don't have any obligation at all to answer . . . It just makes me curious about whether there's something that could reduce those longer attacks.

Here is some screen shots, also of note not available on i-phone. You can see where I thought it was going away, so I stopped O2, then quickly regretted that.