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Hi Everyone,

I'm not sure where to begin as I'm sure you've all heard it before. So, lets just get through the boring stuff...

I'm a 42 yr old professional female. 6 years ago, on Oct 30th, I was awoken at 2am with what I was sure was an ice pick being driven through my skull - after ensuring I was alone and was not being "attacked", I struggled to the restroom to find my eyelid dropping, sweat pouring from above my left eye only - and the pain, oh the pain - I have no words to describe what I felt, but here, I am sure all of you understand "that" pain. I curled up in a ball, pounded my head against the wall until my Docs office opened at which time I called him immediately. So, in short, Oct 29, 2005 was the end of life as I knew it.

After almost a year of investigation, countless amounts of narcotics, from Demerol of Fentanyl (which I am still on), they chose to diagnose me with CH.

Now the bizarre part begins. My private insurance brought in their own team of physicians and such, doing anything to be able to stop paying me is my guess, a weird revelation occured TODAY.

One of the Docs from this team (General Internist) called me about 30 minutes ago, said he and a couple of his colleagues were going through my file, and apparently every test involving cardiology functioning showed the strange, what was considered at the time, benign, heart abnormality showed up, so he wanted me to have an echocardigram. He said he would call and have it ordered as an emergency, and it would be done in the next few days...The phone wasn't hung up for more than 10 minutes before I got a call from the hospital saying to be there at 1:45 this afternoon.

I'm scared, confused, in pain (as always), and have no clue what my heart has to do with my headaches.

Anyway, nice to meet you all. I look forward to learning from you all.

Jo'elle

Welcome aboard.

What a story... So far as I know, there is no direct link between heart trouble and CH. At least I've never heard of it. Others here are likely to have more information.

One thing I know at my age, 65, is to make damned sure what's going on before you let doctors poke around. If possible, take your time. Perhaps they'll find nothing. At least I hope so. Let them know your doubts.

Charlie, who has A-fib and hasn't had a CH hit in two decades.

Hello and welcome to the board Joelle!

Try not to get too worked up over the heart issue before you know just what is going on (easier said than done, I know).  I do know Mitral valve prolapse has been discussed on here over the years, but I am not a doctor and do not know what it is you could have (or not).

Anyway, I'm very sorry you're in pain and I hope you can get into see a headache neurologist that is familiar with cluster headaches and that can get you off the narcotics and onto some Oxygen for aborting and a preventative.

:)melissa

Welcome J.

IMO - you've been seeing the WRONG docs... Like Mel said - you need to see a GOOD neuro who knows something about CH and how to treat it. Narcotics are NOT the way to treat the pain (any doc who KNOWS anything about them knows this - or should).

One thing we've found here is YOU have to be you're OWN advocate where CH is concerned. LEARN, RESEARCH (there's enough research on this site to MAKE you informed) and KNOW about CH before you go to the doc and ASK questions. If he doesn't know anything, either educated him/her or find another doc who'll listen to you.

Some of us have been thru MANY neuro's before we found one that "worked" for us (some are still looking), but personally, I've FIRED more than I can remember.

You didn't say where you're located. If you give us that info, maybe someone can steer you to a doc who knows something.

And I won't get started on insurance companies practicing medicine - My BP is high enough this morning already.

Keep us informed... we're here for you and when we say we "understand" you can bet your bippy that we DO. :-*