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, welcome

did your neuro prescribe you any sumatriptan injections? just wondered if you had tried those as well as the O2?

I did have topamax a few years back but couldnt tollerate it. I'm on verapamil now, but my dose isn't high enough, like you I'm still having too many attacks, although they are much less intense most nights than a few weeks ago,

great to meet you, hope you get some relief from the beast very soon


Fran

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.  

Hi Caren, and welcome to CH.com.

Have you read the "oxygen info" at the left of this screen? The tips there may give you a much higher % in aborting with O2 (oxygen). I abort over 90% of my attacks with O2.

O2 through a NON-REBREATER mask (with the bag) and a regulator that goes to at least 15 lpm is the standard. Nasal canulas are worthless. Getting on the O2 at the first sign of a hit is key to aborting with O2.

The best O2 mask is the O2PTI available on this site. I have 2 of them and they made an amazing difference in stopping hits. Well worth the $28 + shipping.

Imitrex pills are too slow and short lasting for CH. We need the injections or the inhaler. Also Zomig inhalers work well for many on the site.

Read all you can to educate yourself on CH, it is a rare condition so most Doctors never see a CH patient. You may have to educate them.

You have found a place that understands your pain.

Don

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

Hi Caren, welcome.

In my personal experience, Maxalt melting tabs don't work, though they seem to for others. As you'll learn reading here, the Beast possesses different people in different ways.
Allthough I use the injectables preferably, I sometimes take the Imigran pills for lesser hits. But as everybody has said, pills take forever to work.

A tip I learned here, is chugging down some energy drinks. As long as your hit doesn't exceed a 7, they can do some damage to the demon.
Make sure though it's Red Bull or a cheaper ripp-off, containing both taurine and caffeine.

Hope you'll be pf soon.

Pascal.

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...

caren_clk wrote on Mar 31^st, 2009 at 8:12pm:

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...

It's gratifying to find someone who will actually work at making oxygen work for them.

   Kinder gentler potter