hello everyone.  i'm new to this site.  i must say this site is a huge help.  a little over a month ago i was diagnosed by my neuro with cluster headaches.  i've suffered for a couple of years now.  i guess i'm just looking for more information.  someone to share their stories and let me know that i'm not alone and that i'm not horribly crazy because most nights (like tonight unfortunately) that's exactly how i feel.  my neuro put me on topamax as a preventative and he prescribed me oxygen tanks.  i'd say the O2 tanks work 50-75% of the time....if i catch it fast enough....sometimes though the pain just hits too fast and too intense and nothing seems to help.  so far i'm not noticing much difference from the topamax.  i know i'm not on a very high dosage but my neuro seemed to think it would help but i'm still suffering waaayy to often for my liking....lol....i'm open to any and all storied and information anyone is willing to share 

Hi! thanks for the response.  at this time i don't have any injections.  i've read a lot on here about people who use the imitrex injections.  i know when i first started seeing my neuro he thought i had migraines and he gave me imitrex pills and i couldn't handle them, they made my pain worse and i had the same result with maxalt.  i was on a pill called fiorcet for the longest time but when the neuro diagnosed me with CH and he gave me the topamax and the O2 he took me off the fiorcet.  i go back in May and will discuss with him then what else i can try to alleviate the severity and frequency.

Evening and welcome to the site. You sound like you have a pretty good doc. Most of us have to fight and scream to get oxygen! Do read the oxygen info link on the left. With small adjustments people can substantially increase the number of hits they abort with 02. The critical part is your lungs must get ONLY PURE 02. No outside air, no exhaled air. This is best accomplished using a non rebreather mask and a high flow regulator.

Like Skyhawk said, the pills take way too long to get into your system to be effective for us. The injectors or nasal sprays tend to be a better option.

Do continue to read everything on this site. Knowledge is your best weapon. Glad you found us, hope we can help you!

Joe

thank you everyone who responded.  it's so much information to gather.  i'm learning so much as i continue to visit the site. 
i think since the O2 does help i just need to figure out the rhyme and reason to making it work for me to make it work for more of my headaches.  my neuro (as well as all of you here) have said about doing it when the headache first hits and i think that's the biggest problem with mine.  i can do that when i'm at home and it's wonderful at night when they hit, but i tend to get hit when i'm at work in the afternoon and i have a portable tank at work with me but i can't always make it to the tank. 
so anyways, i'm still learning and trying to make sense of it all....and trying to figure out what works for me.  it's nice to finally have people who understand the pain though...