I have known about this site for some time but just now managed to register and log myself in.

Mainly because I am now on cable DSL internet connection at my friend's place (first time for months to get outside my apartment because of infernal cluster episode). I don't know is this just me but if someone starts up mobile internet connection on laptop anywhere near me, I can be 90% certain to have an attack within an hour or two.

I am from Finland, we have different network here for mobile phones (2G) and for mobile internet (3G) and 3G seems to be a trigger for me. And everyone can imagine how difficult it is to "escape" that network in modern day society. Something to do with waves, electricity and electric brain activity, attacks I guess.

Anyway, I have had CH since I was 17 and I'm 35 now. Gone through pretty much everything like lot of people here. Seen a lot of doctors. Only one or two I would call a Doctor. Ended up once upon a time in hospital where they removed most of my blood vessels from the left side of my body (my CH is on the left) as a kind of a 'lucky shot' - "maybe this will cure that pain you have". Well it didn't and things got helluva lot worse. Anyone noticed how hard it is for a doctor to simply say:

"I don't know. I don't have a clue. Gotta ask someone who does."

I could go on forever but try to keep this short so; my cycles have been coming every year for 18 years starting about May and ending at August. I have had the worst attacks CH sufferer could have and have had max 12 attacks per day. But for so long I have been able to resist this somehow with (these medications are probably slightly differently named in the U.S.) Verpamil as preventative and Imigran and 02 as abortative. I have also had a LOT of cortisone (Prednison).

The side-effects from all the drugs have been destructive and now I also have completely new problems with my health brought on to me by these "medications" and operations.

Last year 2010 the cycle did not start as it would have on May, but it started on my birthday (nice one, eh) in July and has not stopped since. 4-8 attacks every single day, that equals one whole tank of O2 + sumatriptans. So far I have not met a doctor who's advice would do some good, I've pretty much self-medicated myself and Thank Gog I've been finally approved to be taken in at the local hospital. Though I am already "ready for the worst" - for what I know they just use the biggest guns over there, strongest painkillers known to man to "kill the attacks".

I am still to say at least STUNNED by the time this cycle started, how long it has lasted and how freakin' hard it has been. Here in Finland most people with CH have been vaccinated for swine flu and some are saying they are having worst cycle of their lives after that shot, the longest and completely out of place. That's me. I am absolutely, completely out of hope right now.

Sorry this was a bit long 

I will be following the board with great interest. And greetings everybody and sorry you probably have this Devil as well if you're reading this. Pain free days for everyone 

As long as there's life there's hope I guess !

EDITED: excuse if my english is a bit off, not my mother tongue 

Guiseppi wrote on Jan 18^th, 2011 at 3:22pm:


My prescription says 240mg (3x80mg) and I have raised it to 720mg by myself. I have asked for a blood pressure measurement two times this month, not received. Been thinking of buying myself one of those things to measure it myself. One would not believe what I've seen as far as the doctors go, there has been some who refuse to admit CH is a "legimit sickness" and some to whom I almost have had to force myself to strip so they could see my back for an instance because otherwise they would not.

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Yep, over 170 days of continuos prednisone - I could make quite a list to sum up everything it has brought with it.


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I have, thank you. Though it's impossible at the moment to imagine life without pain, the pure knowledge gives me hope that there is something like this out there.

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I hope so too. Thank you for the warm welcome