dhuddly

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.

@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.

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.

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.

If we could compile a detailed list of what the app would need to do I could have us a fullstack app in no time. I can do several frameworks but enjoy NextJs the best since it is web based. No need for playstore and apple when you use NextJS. This website here is great though and could easily be converted. If you mean a native app, I would offer some positive pushback why keeping it web based can reach more people though. If you mean social media type of app with various functions and more dynamic than static, I have a couple MVP's collecting dust we could use. Whatever you decide though please know I'd definitely volunteer my skills and knowledge for the mission.

I can help you. Just tell me is it a NextJS and react app? I'm a fullstack developer.

Yeah it's a long similar story as what im finding out through reading various accounts and explanations that other cluster survivors describe. The undiagnosed ADHD is the big key for me because the cluster headaches started for me in May 2025, 2 days after starting vraylor which was not something I easily agreed on but since id spent over 25 years treating anxiety with SSRI, SNRI, Benzos and counseling, I decided last year to talk to my providers about treating the ADHD that has always been crazy noticeable about me(not in a bad way I swear lol) that maybe that might actually cure the anxiety and it did. But not before a provider wanted to rule out one more mood disorder before moving on to treating the ADHD. I felt at the time that medical history should matter more because honestly it felt like mine was worth nothing. But I'm a good patient. So I started vraylor and day 2 the clusters hit. Day 3 I easily decided that vraylor was never going to enter my body again. Days 3, 4 and 5 were bad. The clusters started around midnight each night. Than started progressing to earlier, than more, than earlier, than more and eventually 8 weeks later July 24th was my last one. I started ADHD meds the following month and realized or felt that Dopamine was something worth looking into but not for treatment for CH but more like there is a link between dopamine, serotonin and CH. That led me to find many published research papers on dopamine, serotonin, mast cell(this one hurt to learn the wheels of profit because of the results of triptan were widely accepted that mast cell research has been dormant ever since as far as I can tell) that was around late 80s early 90s when triptons came out. This ties directly into my first couple forum reads on here where some of us guys use cialis and apparently I am the oddball of the general consensus of it being agreed on as a trigger for CH(thankfully) because ive taken it for years. Sometimes everyday, sometimes weekly but that led me to search why the heck something that is like 50 to 1 on triggering vs has never triggered me could be. Dopamine deficiency or untreated ADHD effects the way vitamin D(d3 reg) will work in us. D3 works because it boosts dopamine production in the hypothalamus, the clock,and not just because it's anti-inflammatory. The people it doesn't work for probably have dopamine low enough that D3 alone can't get them above the tipping point. I've not found any research that connects these but the individual researches we see all touch on it in some fashion or another. I have been hesitant to comment and share these findings because as CH survivors we know. We know that the pain of the beast is more than any one person should have to suffer through and I see a loving community here. I'm not trying to burst any bubbles of comfort for anyone. I'd love to hear about or find more on CH->NO->DOPAMINE(both in terms of ADHD and the traceable chemical pipeline)->D3->hypothalamus. Please keep in mind I am not saying take speed. I'm just saying why isn't neuroscience, immunology, psychiatry and pharmacology not communicating their findings from decades of research because between the 4 of those fields I see plenty of I dividual bits and pieces of everything we say clusters are and feel like. For me mentally, I had to investigate this because once I got through the clusters, and started ADHD meds for the first time in my entire life, the anxiety stopped. Like really stopped and that in itself is huge for me. But having to go through the clusters first, like directly before it. Just to rule a mood disorder out that 25 years worth of that same thought already ruled out and vraylor being the trigger to the worst pain and experience I've ever endured? The convergence of all of this is why I probably spent the first week of the clusters not understanding how such a simple decision with a med triggered it. Took me several weeks to mentally get past that fully. I haven't done the D3 regimen, or mushrooms or the other stuff I'm reading about on here not because I'm anti any of it but because im new to this still. They haven't returned yet for me. I'm assuming the shadow I keep reading about on here is lingering around though. Sorry for the longwinded read folks.

The D3 regimen works for a lot of us, and the usual explanation is 'anti-inflammatory.' That's part of it, but there's actually a deeper reason. Vitamin D3 at high doses upregulates an enzyme called tyrosine hydroxylase, which is the rate-limiting step in making dopamine. And it does this specifically in the hypothalamus, which is the clock that runs our cycles. So when you're loading D3, you're not just fighting inflammation, you're helping your brain make more of the chemical that keeps the beast on its leash. That's also probably why it doesn't work for everyone. If your baseline dopamine is already really low for other reasons (like undiagnosed ADHD, which is way more common in CH than anyone's studied), the D3 boost might not be enough on its own to keep you above the tipping point. Doesn't mean it's not doing something it just means some of us need more than one thing pushing dopamine in the right direction. For me I have already found huge connections between ADHD and CH and I am greatful that this community is here because the suffering is too much for any one person to try to navigate alone.