Hello everyone.  My name is William.  I'm 33 and I have had chronic cluster headache for 13 years.  I've visited this board on and off for a few years but never really got involved.  I seem to be on the extreme end of the CH spectrum.

I grew up with chronic migraine from age 4 to age 20 and yet my first cluster headache still sent me in a panic to the emergency room.  I've seen 22 doctors and been on 75 medications.  I had 2 surgeries to my nose which, of course, didn't help.  I've tried all kinds of alternative therapies and have all kinds of crazy stories.  I trained up weight lifting until I could bench nearly 300 lbs and then I tried cardiac training until I could run a 5k in well under 20 mins but being super healthy didn't help.  The only things I haven't tried (as far as I can tell) are oxygen and psychedelics (or anything else that is illegal).  I've ordered an oxygen mask (and t-shirt!) and an O2 bottle and I'm really looking forward to trying it.

The reason I've been shy about speaking up is because...my condition has become my entire life.  When I read posts here I see people have lives and jobs and loved ones who worry about them and their condition is manageable.  I don't respond to any drugs and I have an extensive list of triggers.  If I don't leave the house I only have to deal with a random attack every 5-7 days, each of which lasts for 3 days.  If I do leave the house its almost a guaranteed hit and if there's something I absolutely have to do I just have to mentally prepare myself for the attack I'm about to bring down upon myself.  And I have to get whatever it is done during the attack.

I know a lot of you call CH "the beast" and that evokes the image of a creature that attacks you.  I've never really put a name to it, but I think of mine as a dungeon keeper.  If I stay put and follow the rules I'm mostly spared, but if I defy it by going out in the world I get escorted to the iron maiden, which happens to only have 1 spike just for my left eye socket.

The pain I can handle.  It's the isolation that is really getting to me.

What I'd like to know is: are there other chronics like me who are practically home bound?  How do you cope with it?

Thanks for reading.

William,

Are you saying that your headaches last 3 days each, and that your headaches do not respond to any medications at all?

Marc

and 22 doctors and 75 medications?????   wow.

      How do we chronics live?   We live between the hits.  We are very creative when it comes to jobs and dealing with others.  We come here or at OUCH and we educate ourselves and learn everything there is to know about this condition so we can educate others.

      
You say you havent tried 02 or alternatives.  I suggest you look into both of them in depth.  The oxygen button to the left of here in yellow will give you a wonderful insight.  Many, MANY here swear to it's abortive properties. 

Marc wrote on Sep 29^th, 2009 at 7:04pm:

William, Are you saying that your headaches last 3 days each, and that your headaches do not respond to any medications at all?

Yes, once triggered the pain lasts for 3 days.  It has morphed several times over the years but that's how it is right now.  I only get to sleep through exhaustion and it always screws up my sleeping pattern.

No, they do not respond to medication.  I used to take large quantities of pain killers to cope with the pain but it took a toll on my body and mind so I don't use them anymore except for very rare occasions.  No matter how bad the pain is, its not worth losing your identity to avoid it.

Linda_Howell wrote on Sep 29^th, 2009 at 8:10pm:

You say you havent tried 02 or alternatives.  I suggest you look into both of them in depth.  The oxygen button to the left of here in yellow will give you a wonderful insight.  Many, MANY here swear to it's abortive properties.

Actually I said this:


Quote:

I've tried all kinds of alternative therapies and have all kinds of crazy stories.

Among them: acupuncture, xylocaine injections in my forehead, Chinese herbal hallucinogenics made from endangered animal organs, and a little known substance called ORMUS.  Kudzu actually puts me in a permanent state of cluster attack.  I really like melatonin but its only good for taking the edge off and trying to fix my sleep pattern.

And I also said this:


Quote:

I've ordered an oxygen mask (and t-shirt!) and an O2 bottle and I'm really looking forward to trying it.

I'm sorry I wasn't able to express myself in a more understandable fashion.

Whoa.

William am so sorry to hear of the extremeness of your CH. I'm stunned and overwhelmed thinking about how you must feel. 

I hope/pray that the O2 will bring you relief. Please let us know how it works out.

Take care,

Christy

Hi, William. I am a chronic also, with ch and a few other headaches. My goal for my neurologist was to keep me working as long as possible. It is a struggle, but I'm doing it.  When I'm off work is when I want to stay home.

You should have some relief with the O2.  Also, if you are like me you may have a different standard for relief that people who actually have something that has worked well. I consider less intense pain as a success.  I just need to be functional.

One thing that has helped me quite a bit is botox, 20 small injections. it takes several days to start working and lasts about 2 months, then you still have to wait until you can have it done again.  Not perfect, but an improvement.

Good luck.

Charlotte

He seems to have become an Ex Member.