Cluster headache help needed

Honestly, I don't think there's any point in me copy-pasting a list of symptoms for this absolute monster known as cluster headaches. If you're actually living through it, you already know exactly what kind of hell we're talking about. I’ve been battling clusters for 15 years now, and man, during my worst cycles, I’d drop like 20 pounds just from the sheer agony—it seriously pushed me to the breaking point. Not to mention all those endless doctor visits, getting totally misdiagnosed, swallowing mountains of heavy meds, and bouncing between different neurologists who were just scratching their heads. Things are looking up lately, but back in the 90s? It was like nobody in the medical field even knew what hit them. I basically had to become my own detective, Googling everything until I finally figured out what was happening, walked into a neurologist's office, and was like, "Yeah, this is it." During my second-to-last cycle, I finally gave oxygen therapy a shot, and oh my god, it absolutely kills the pain. Plus, I think I actually found a way to stop the next cycles from hitting. If you guys don't mind, I'll drop a link to a cluster headache forum. I see so many people still going through the wringer, popping Imigran and other stuff that leaves you feeling like garbage because of the side effects, when oxygen is honestly a miracle worker. It feels completely natural, safe, and zero side effects. So yeah, please feel free to ask me anything! After 15 years in this nightmare, I feel like I’ve basically earned a PhD in cluster headaches.😁:

Matthew Bishop44 said:I don't think there's any point in copy-pasting the symptoms of this absolute monster called cluster headaches, because anyone actually living through it knows exactly what kind of hell we're talking about. I've been battling clusters for 15 years. During every single cycle, I’d drop as much as 20 pounds—it was brutal. I was seriously on the edge. And don't even get me started on the endless doctor visits, the wrong diagnoses, swallowing mountains of heavy medication, and getting poked and prodded by all sorts of neurologists. Things are a bit better now, but back in the 90s, almost no specialist had a clue what was going on. I literally had to Google my way to a diagnosis, find a neurologist, and tell them, "This is it." During my next-to-last cycle, I finally tried oxygen therapy, and honestly? It kills the pain right now and helped me figure out how to stop future cycles from hitting. If you don't mind, I'll drop a link to a cluster headache forum. I see so many people still going through that agony, popping Imigran and other drugs with horrific side effects, when oxygen works like a miracle. It's completely natural, safe, and has zero side effects. Please, ask me anything you want. Over these 15 years of hell, I’ve practically earned a PhD in cluster headaches.😁:

Hey there!
Reading your post felt like looking in a mirror...
I first felt this specific type of headache exactly 10 years ago, but I wasn't officially diagnosed until 12 months ago. Just like you, I ended up discovering what was actually happening to me through the internet, specifically by watching videos on YouTube 😢

Right now, I'm taking Propranolol as a preventative measure... I've never tried oxygen therapy because, well, nobody knew what was wrong with me at first. All my tests came back perfectly normal, so they just blamed everything on stress... and that went on for years.
I'm curious—do you know how to help yourself during an actual attack, or even just something to take the edge off? I'm terrified of them coming back. Usually, my cycles hit in the spring and summer. So yeah, any advice would be huge!
Thanks in advance!

I honestly feel like Propranolol is just a preventative that ends up making your cycle run faster, so I’m not totally sure why you're even starting it now. If you're looking for prevention, I guess the best bet is just slamming high doses of Omega-3 and Vitamin D3—like, maybe four times the daily recommended amount? It helps with both the cycles and the oxygen stuff. In the States, as far as I know, Airgas is pretty much the main place to get oxygen. You should definitely check out a cluster headache forum; they have everything laid out there. For me, my cycles usually hit in the fall; over the last three years, they just start off as mild attacks and then sort of fizzle out on their own. I don't know if that's because of age (some people say it stops after 50), the oxygen, or the vitamins, but personally, I wouldn't bother with those meds anymore. Regarding the oxygen, if you're certain you have clusters, it works 100% of the time. As soon as an attack starts, you just rush to the tank and within a few minutes, the pain subsides before it drives you absolutely insane. You might notice the attacks happening more frequently during the first few days—I actually went from two a day up to ten at one point—but don't let that freak you out, it's totally normal. Equipment-wise, you'll need at least two 200-bar oxygen tanks, a small portable one, a regulator, and a mask. A few years back, you could rent gear from places like Airgas for a tiny bit of change (besides paying for the oxygen itself, which is maybe $70 a tank), but from what I hear, our healthcare system has basically banned that kind of thing now. I guess they'd rather we pay big pharma for drugs that are 1000x more expensive than just using oxygen.
Whoops, I totally rambled there! Feel free to shoot me a PM if you want; there's a ton of other stuff you should probably know, and seriously, go check out that forum I mentioned.

The "preventative" meds I'm on also cover my tachycardia, especially since my doctor was already thinking about putting me on Depakote...
It's cluster headaches, no question about it. I’m averaging about three attacks a day, each lasting an hour or ninety minutes. The symptoms? Intense pain on the left side, my left eyelid slamming shut and watering, and a totally blocked left nostril. As for the sheer intensity of the pain—don't even get me started. We all know how brutal that is.
And this whole situation regarding oxygen and being unable to get it through my insurance? I'm honestly in shock. They told me straight up that the only way to get it is through the ER. It's an absolute disaster.
Thanks for the advice. I'm definitely going to start getting my equipment and everything else sorted out, because this time of year—summer and this heat—is pure hell for me.

Honestly, rushing to the ER is kind of pointless because the whole trick with oxygen therapy is starting to inhale the second you feel an attack coming on. The more it ramps up, the longer it takes to calm down. Unless you literally live inside an emergency room... which, okay, nobody does. That’s why having a little portable tank (enough for maybe 2 or 3 attacks) is a total lifesaver if you get hit while you're at work or out and about. And seriously, you need two big tanks because you do NOT want to be stuck even a single minute without supplies when the first one starts running low, trust me. I'm not sure where you're located, but here in Washington, D.C., a few neurologists have actually taken an interest in clusters, though it's still pretty hit or miss. The best example is their recommendation to breathe oxygen at a flow of 7-15 L/min!!!!! Look, a person at rest breathes maybe 12-15 times a minute, and you know damn well that during an attack, it feels like you're sprinting a 100-meter dash. An absolute bare minimum is a 15 L/min regulator, but newer research actually suggests 25—you basically have to hyperventilate the oxygen. But here's the catch: the regulator they sell at Airgas only goes up to 15 L/min and costs around $667 if I remember right. You can definitely find better stuff on eBay for a way cheaper price. So yeah, it's a big upfront investment, but it is worth every single penny. It'll totally fix your life for those 2 or 3 months while your cycle lasts, and you'll see how much muuuuuuch easier everything becomes.
Btw, I actually have a large tank sitting here, so feel free to reach out whenever you (and if) an attack hits, and I'll lend it to you.

Oh, and one more thing! My neurologist actually suggested I start an initiative and file a formal request with the Department of Health to get oxygen therapy recognized for cluster headaches. Honestly, people on the online forums can’t believe that it isn't covered here in the States. I mean, if you think about it, the monthly cost for oxygen per patient would only be like, what, maybe $15 or $20 for the government? And then you've got the meds, which run at least $150 or so. It was weighing on my mind for a while, but honestly, it's just so hard to reach out to all the other patients—my doctor has about a hundred of them under her care, but you know how it is with privacy laws and HIPAA and all that blah blah blah... so I kind of lost steam. Maybe something has changed in the last three years, though I really doubt it.

The more I dig into this, especially regarding oxygen therapy, the more terrified I get. The costs are absolutely astronomical—I honestly doubt I’ll ever be able to afford it.
It’s unbelievable how little attention is given to a condition this brutal, this chaotic, and this serious.
People really need to band together and start raising awareness about this. There are so many people out there living with this exact condition who still have no clue what’s actually happening to them... all thanks to our so-called "specialists." If I hadn't decided to seek a second opinion instead of sticking with that overrated doctor at Mount Sinai, I’d probably still be walking around with a migraine diagnosis right now.
If anyone ever starts an initiative or a movement to change things—count me in. I’ll be the first one there!

Honestly, there’s zero reason to be scared of oxygen! It’s totally harmless, and the gas itself isn't even pricey—I used to grab a big tank for maybe $10, and I was going through one every month or so. (That’s basically less than the price of a fancy latte, right?) I guess the real sting is just that initial setup cost, but you can definitely find way cheaper deals if you look online. Look, I feel like I know exactly what kind of cycle you're dealing with right now... you're probably relying on imported stuff just to handle the actual attacks, and honestly, *that* is what you should actually be worried about. Maybe it's worth looking into renting a tank and a regulator first, just to give it a shot

Man, I dealt with a trigeminal neuralgia diagnosis for like 10 whole years... :(

I haven't taken a single thing during my episodes all these years—absolutely nothing.
My cycle ran from late June through early September last year, and I didn't even get an official diagnosis until December.
That’s why she prescribed me Propranolol as a preventative measure, just to make sure things don't spiral back to where they were.
She explained that since it's a beta-blocker that constricts blood vessels, it essentially "blocks" the attack... because apparently, the whole reason these attacks happen is the sudden dilation of the vessels.
I actually spent my afternoon at the pharmacy today, pestering them about oxygen. I was trying to figure out how to get my hands on some, if they knew where to buy it, how to order it, anything really... But the woman behind the counter just stared at her computer screen looking up their suppliers and told me flat out—nothing. She had zero information.

From what I can tell, if you need medical oxygen around here, you pretty much have to go through Airgas. They’ve got a facility out in suburban New Jersey, but it’s not like you can just roll up to the window and ask for a quick refill, you know? I guess you actually need a formal referral from your neurologist first before they'll even deal with you.

Of course I didn't just waltz in there demanding 🙂
I was strictly looking for information, just trying to see what they had to say...
Honestly, it seems like it’d be easier—and probably cheaper—to find mushrooms in the woods than it would be to get my hands on some oxygen 😁

I actually have a whole separate forum dedicated specifically to treating fungal infections—assuming we're talking about the same kind of stuff 🍄—so if there’s anything else you’re curious about, just shoot me a DM! I don't want us getting banned or anything

Hey everyone, does anyone happen to have a used oxygen tank they’re looking to part with? We’re trying to help out someone dealing with cluster headaches, and honestly, things are so tight right now they can barely afford groceries, let alone medical supplies like oxygen. If you have one lying around or if you could point me toward some resources where we might find something affordable, please just shoot me a DM. Thanks a ton 🙂

I’ve posted about migraines before, but my interest extends to all types of headaches. I wanted to share an invitation to participate in a meaningful research study regarding headache disorders here. 🙂

Hi everyone,

I’ve been diving deep into the mechanics of headaches for a while now, which is why I follow this thread. My curiosity has actually led me to focus my senior thesis on this subject.

I’m currently at a stage where your input would be incredibly valuable. I am conducting research focused on the lived experiences and emotions of those dealing with chronic headaches. If this sounds like your experience, please consider taking about 10 minutes to complete this survey: https://goo.gl/forms/wf7EtLLj6iZwqoaj1

Beyond helping me reach my academic goals, you might even gain some personal insight from the process.

Feel free to reach out if you have any questions. Thank you so much in advance!

Hi there!!
I have a question about cluster headaches... I see that most people deal with attacks that last a couple of days...
For me, the pain kicks in right before bed, lasts all night, and drags on through almost the entire next day... I often end up vomiting because the pain is so intense...
It starts right under my right eyebrow and then moves to nasal congestion, eyelid twitching, and sometimes even tooth pain...
I'm wondering if this is just the start of something much worse or if it's just a milder version...
I'm 27 years old and these headaches started showing up about a year ago... sometimes they hit every two weeks, and other times it's more than a month between them..

Laura Martinez60 said:Hey there!!
So, I've got a question about cluster headaches... it seems like everyone else's attacks only last a couple of days...
For me, the pain kicks in right before bed, lasts all night long, and pretty much drags through the entire next day... most of the time, the pain actually makes me throw up...
It starts right under my right eyebrow and then spreads to my nose getting all stuffed up, my eyelid twitching, and sometimes even a weird ache in my teeth...
I'm wondering if this is maybe just the beginning of something way worse, or if it's just some milder version of it...
I'm 27, and these headaches started showing up about a year ago... sometimes there's a two-week gap between them, and other times it's more than a month...

That doesn't sound like a cluster headache to me.

Hey,

I’ve been battling this monster for over a decade now. I won’t bore you guys by rehashing all the symptoms and the misery I deal with; we all know the drill, unfortunately.
That said, I have a quick favor to ask. Since I just moved to Washington, D.C. from abroad, I’m trying to figure out where the best clinic or hospital is in the D.C. area for cluster headache treatment? I haven't been able to find anything concrete online.

Thanks in advance,
A.

Man, tonight—well, actually earlier this morning around 4:30 AM—I got hit with this brutal headache right behind my left eye. I felt a little twinge last night but didn't take anything—total mistake!—because I figured it’d just go away by morning. Finally took some Advil after... honestly, I could barely even make it to the bathroom because I felt so weak. Once I crawled back into bed, the nausea kicked in hard—felt like I was gonna barf but never actually did. No matter how much I tossed and turned, nothing helped. Not sure when I finally passed out, but by the time I woke up, everything felt fine again.
A few months back, this exact thing happened a bunch of times, and sometimes I actually ended up throwing up when the headaches hit like that.

Matthew Bishop44 said:I don't think there's any need to copy-paste the symptoms of this monster called cluster headaches. Anyone living through it knows exactly what's up. I've been fighting clusters for 15 years. During every cycle, I’d lose up to 20 pounds—it was brutal. I was right on the edge. Not to mention all the doctor visits, wrong diagnoses, swallowing piles of heavy meds, and bouncing between different neurologists. Things are a bit better now, but back in the 90s, almost no specialist had a clue. I actually found my own diagnosis by Googling it, then went to a neurologist and told them, "This is it." During my second-to-last cycle, I finally tried oxygen therapy. It kills the pain instantly and I've even found a way to prevent future cycles. If you don't mind, I'll drop a link to a cluster headache forum. I see so many people still going through that agony, popping Imigran and other drugs with terrible side effects, when oxygen works like magic. It's totally natural, safe, and has zero side effects. Feel free to ask anything; after 15 years in hell, I've basically earned a PhD in cluster headaches.😁:

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