Posts by Karen Chavez54

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 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.

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!

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.

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!