Hi All,

This will be a tad rambly -- but I'm going to write it as it comes.

I'm 32 and have been suffering from these headaches since I was about 15.  When they started, I got a diagnosis of cluster headaches, but there was no real research that was available to me and this was pre-internet.  Over the years, I've sort of self-diagnosed to my medical professionals with migraines, because it was a condition with documentation and pamphlets and something that sounded similar although I lacked the auras and some of the other things that commonly are associated with migraines.

I've been to the ER once before for them when I just couldn't take it any more and was ready to jump off my balcony to make the pain stop.  They told me they were busy and to come back another day -- I think they thought I was some kind of a junkie.

I take Imitrex as an abortive therapy which works about 90% of the time for me.  When it doesn't, I just have to muscle it out.

I have a new doctor who has tried things like Accupuncture and I'm also trying Massage therapy and whatever else I can think of..

I now have a referral to a Neurologist that I'm seeing tomorrow. 

But all of this is not really why I'm writing --

My family suffers tremendously from this.  My partner sees me struggling and doesn't know what he can do.  He just sits quietly and waits.

I felt so alone as though I was the only one who suffered from these symptoms and reading through this board over the last two days and the websites has given me a tremendous amount of surcease.  I feel as though this is manageable, as though other people understand what it means and what it feels like...

If nothing else, it makes me feel part of a community of people who understand what it means.

So thanks.  I don't have a lot to add, and I'm clearly much less informed than the vast majority of people here.  But, I'm learning.

Thanks... again, thanks.

Hi Ozuri!  Welcome.  Join the "undiagnosed forever" club, me too.  Went about 20+ years until I started figuring this out.  Lots to read as you may have noticed and there are some things to try if you haven't already. 

First of all think about getting your partner to cruise this site.  There is an extra place for supporters too. 

If you are up for advice?? I would read a ton and then tell your nuero what you want tomorrow.  Unless they are a headache specialist with knowledge of clusters, you may or may not get much help from your visit.

Oxygen seems to be a key abortive for everyone, but you got to go big, 15lpm or more is effective for most.  There is other stuff too on all of these threads, but figure it out before your appointment if you can.  The doctors seem to be hit or miss and the last thing you want is to be taking something your doctor prescribed, but hasn't worked for anyone here.

And when you are sick of all of that, go to clusterbusters.com and read about all of the other treatments that have been effective.  :D

Stick with us, and good luck!! ;)

--Shaggy

I actually found this site through some links through his site.  He is a specialist in migraine and migraine variants, cluster headache and trigeminal autonomic cephalgias, chronic daily headache and other primary headache disorders, according to his website -- so I am hopeful.

I'll keep you posted -- maybe he'll have some new ideas as well.  I haven't tried the O2 thing, so I'll see what he says.

Cool, keep us posted.  Sounds promising. 8-)

--Shaggy

Hi Ozuri

welcome to the site .

Just some thing to put out there , energy drinks like red bull can help . Any type as long as it has minimum of 0.03% caffeine and 0.4% taurine in it . Chugging one of these down at the first sign of an attack can stop low level attacks and reduce high level ones . whats more you can pop down the shop and get one as you need it , so it's more straight away too, it's worth a shot

good luck with the neuro.

Nigel

Welcome to the board. There are some managing treatments many have been succesful with. Using Verapamil, Lithium or Topomax as a prevent to slow down the number of attacks. Then using oxygen to manage the actual attacks. Let us know how the neuro appointment goes, we may have to help you educate him as to some of the newer treatment options available. Good luck!

Joe