Hi! I'm Marisa. I have just been recently diagnosed with cluster headaches. Even though I'm almost 18 and have been suffering since I was 14. I had an awful time with getting to the bottom of this and what was wrong with me. Neurologist I was going to basically first time I saw her said 'Oh, it's just migraines! here!" and gave a prescription. That didn't work. and another and another. And no matter how much I explained to her she'd just make me try more stuff. It got to the point where nothing she gave would even remotely touch the pain. I was going to the ER five times a damn week. (I still go to the ER when I can't take it.) Thank God for my mother who is so helpful and has been there for me and trying to get me all the help I can get. We had to tell my primary that she wasn't helping me at all. So, my primary wrote own all my symptoms and talked to an 'adult neurologist.' (since I'm not 18, any decent neurologist where I live won't even make an appointment for me until I'm 18.) So, now I've been set up with oxygen until I go an see a specialist, five hours away from here, who actually knows what to do. - thank god. But I'm also soo soo glad I found this site! It's hard to find people to understand what I'm going through because people are ignorant and think 'it's just a headache'. When they couldn't even begin to imagine the pain I'm in. I've missed a lot of school because of them.(And  holy, teachers are not understanding and super rude about it. even though my doctor has explained it to them 50 times) I get a lot of night attacks. I basically don't sleep at all when I have a cycle of them. I'm barely going to graduate. I've already missed almost three months this year. I get so stressed and depressed during cycles. It's hard. All I want to sleep and to feel like a normal 17 year old. And I'd do anything to make them stop. To not feel this pain anymore. It's the WORST pain I've had in my entire life,which you guys know that, it is awesome that i'm saying how I feel right now and someone who's reading this knows exactly what i'm talking about. (it's not awesome that we have this pain, but you know what i'm going through.) I mean, I had cancer and went through chemo therapy when I was 12 and I can honestly say that these are 1000 times worse than any of that. I've had such a long journey trying to figure out what's happening. And I'm not glad I have them, but I'm glad I know what it is. And I'm SO glad to have found this site and to learn more and to see things that help other sufferers.


Whoever made this site you're literally an angel.

I actually read up on it! I love the idea of something being natural, since i've tried god knows how many medications in the past four years! I would absolutely be willing to learn more about it and try it!

ER trips are defiantly frustrating especially when ER doctors don't understand the disease. I don't have to worry about expenses for meds or doctors visits because i'm state health insurance until I'm 21. I do have o2 but i'm not sure what the flow is or what exactly type of mask i have? so i should figure that out. And to name a few of the meds i've tried topomax for a preventive which i was on for two years and i didn't think it helped me and neither did the doctors. but they never tried to give me another preventive? i've tried imitrex in pill form and nasal, pill form made me sick every time i tried to take it. and i didn't find that the nasal really helped me much besides making me super dizzy. i've tried tramadol for pain. and others that i have no clue how to spell. I'm still trying to figure all this out.

I just read through the oxygen info and I do have the correct mask however my regulator is set at 8? And I'm not sure if it goes any higher or not I'll have to see.

And when I go to see the headache specialist that's one of the things I have to get is a new preventive. Nobody wants to put me on anything because they want the specialist to figure out what's best for me, i guess. 

And tramadol didn't work for me so I stopped after maybe two times of trying it, no point in taking something that doesn't work. And rebound headaches i hate.

And my mom and I have read up on the D3 regimen and Batch has PM'd me about it. I'm going to start it this week and hopefully it helps me out!

A good half hour at least. If I manage to start it when i feel it first coming on sometimes quicker. But once it's already started sometimes I do some then if it's not helping wait and try again and usually the second does the trick.


but the doctor i'm seeing basically knows nothing about treating CHs. that's probably its not high enough? i'm being sent to a headache specialist five hours away from where I live because i live in such a small area no one has dealt with them and no one really is sure what to do about them.

Topamax is often prescribed and for some, it works. Didn't work for me and apparently has not worked for you. There really is a broad range of options for preventatives but you need a specialist who knows the ins and outs of CHs to help guide you. I take verapamil and lithium, plus the D3 regimen and other stuff. O2 at high flow (for me, 25lpm) and energy drinks (Red Bull, Monster) are my go to's. I also use Imitrex injections which you might look into. Ask any questions and let us know how we can help. Blessings. lance

Yeah I chug a redbull with my 02 and in addition to speeding the abort for me it also seems to push the come back attack several more hours down the line!

Joe