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@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

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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.

The above app is 100% hosted and stored on your own phone/tablet. No data is transmitted to anywhere else. I specifically built without Google play services for privacy reasons. Now to be honest I would not install a random app on my device without knowing where it came from. So my recommendation is to load it on a old phone you got kicking around and try it there first. It won't need a sim card or even to be up to date, and can be installed over wifi.

Its got some minor glitches I am still working out but here is what I built for myself. I use it to track cycles, attacks within the Cycle and the attack it self. If there is interest I will provide updates. The glitches I found where adding past attacks, the calendar was off by one day, so I choose one day ahead for yesterday's log date. I also want to add the ability to edit past attacks and notes. But otherwise working great. Provides good analytics for Cycles, and Attacks. Logs Pain, and O2 Usage and tie to local weather for increased data collection. Files can be exported into JSAN or CSV for medical or historical record keeping. The Notes can be for anything you wan to record, busting attempts, diet, D3 Regime tracking ect. Hope you all like it. https://github.com/MyDigitalFreedom/ClusterTracker/releases

@Craigo Brother I mean what I say and probably literally with how I type lol. It hurt. And I enjoy reading your interactions and guidance in these forums. You obviously didnt mean to cut me like that because it's clear to me you really care for everyone here. I won't ever hold one reply or one response against anyone here. I appreciate what you say and I appreciate what you have said in the past on here. Your past forum chats are really good and caring. One of my favorites here so far lol. Probably why it stung but anytime you want to talk I'm also a phone call away or zoom call. CH is too important and shared between all of us here.

@dhuddly and to all reading. After a sleep I feel I overstepped with my comments above so I wanted to offer an apology and make clear that's my stuff, not his and I should have chosen my words better. Sorry Dhuddly, hope you may be able to accept my apology.

We should also specifically look at adding video features. Because as I have learned recently, all of us talk and type differently. We are from all walks of life. If there's been misinterpreting due to text lengths and formats then video is an option to help us differentiate things like crazy or delicate. Because when anyone lands here, it means that they are finally vulnerable enough to be here. For example, in video you guys would see me talk fast. It's my nature. But in text forums like this, I write very long replies. Not because I am long and slow or delicate. Lol for me it's literally an ADHD thing that's never slowed me down. If storage is an issue for video features then there are plenty of avenues we can use or explore. It also would allow for a healthier community experience because anytime you have a face and voice to connect to the text it paints the whole picture. Just some food for thought.

I can work with truck driver vocabulary and your grammar isn't that bad. Books and written to be read and videos to be watched, I'd love to check them out, please feel free to drop links here or send me a DM so I can go check them out. I just read The Headache, Tom Zeller Jr, episodic cluster sufferer and it was an absolutely amazing read. Welcome again to the community @dhuddly, if that's what you were after then certainly you are in the right place, there are some phenomenally good people in the cluster headache community, of that I can say for sure - and the reason I reckon I will be back in Chicago come October for this years conference!

Craig no offense taken. And sorry if this comes across as defensive, I am aware of what you describe, I am also aware that I don't talk how I type and I don't type how I talk. I can understand why you are saying this to me but I would suggest maybe checking out some videos I made during covid. They have nothing to do with cluster headaches and only connect in a way that let's me know that the ch didnt take all of me and I survived. Beyond that the research I've compiled was a direct result of me fighting me way back so through the most traumatic and painful time in my life. I am described as a blunt person long before this. Through years of some of the same things you listed and can appreciate why you'd feel led to make sure I'm not out of my mind. I have no expectations from this forum. I am here because I needed to find community. People don't get through this level of trauma alone and sounds like you understand that. You can see those videos on TikTok. They've been there for years. I talk alot in them. The way you read my text in these forums will I guess allow you to understand that long responses, run-on sentences is kind of my thing. Even since MySpace I was aware that some people misunderstand how I type sentences in text. Just like this reply is too long. Its just something I've accepted decades ago. In person, I am the type that is comfortable delivering hard messages to people and that translates to caring. And that is definitely something we share Craig. Oddly enough, the first thing I did as far as treat myself to normalcy after ch was to write two books that I began back in the videos im talking about. Years of me being me brother. I have the grammar of a 10 year old and vocabulary of a truck driver. But that doesn't mean I'm out of my mind brother.