Hi, I’m Heleen from The Netherlands, with a dodgy hypothalamus (read this term somewhere on the board, and I love it!) since I was 18, back in 1987. Got diagnosed with CH on the 7th of January 2007, after having almost given up on the entire medical profession. As to my age now, I’ll let you do the math.
This site proved to be my life saver, as the headache diary I started when I first found this site in 2002 gave me the ammunition (after 5 years of entries – once bitten twelve times shy
) to give medicine one more try. After having a 15 second look at it, the diary made my current GP start writing a referral to a neurologist . Suffice to say I was dumstruck at that, which made my GP smile sadly, and apologise for “the ignorance of doctors on CH until fairly recently” (how I adore him). The amount of similar stories I've read here are sad proof he hit the hail on the head, but I'm also optimistic that sites like these are helping to raise awareness.
Anyway, now seeing a neurologist who specialises in CH (adore him too, as he’s exteremely supportive, and genuinely concerned about how I cope, - and his looks are a little bonus too) , and it just feels so good to finally know I’m not just nagging – officially
He’s prescribed Verapamil and Imigran (Dutch version of Imtrex), and I started using that on my December cycle in 2007. The first time I used an Imigran shot, I thought I’d gone to heaven and then some. Pure unadultered bliss…
Now, after six years of having only the one December cycle – cycles always suck, but six Christmasses and NewYears in a row partying with the beast
… - I’m now on a cycle in August. Wondering if this is the medication, but then again I used to have 2 cycles per year in the good old days of this wonderful afflication, so who knows. Just to be on the safe side, experimenting with a minimum of Imigran (trying the Q-tip tip, and shooting up only when I really have to, rather than when I would just like to – which is kind of difficult now that I know there is relief after I dealt with the beast med free for 19 years).
Whatever way, the one thing I’ve learned is never to think you understand this thing, and having read the messages I guess a lot of you out there share this sentiment.
And I should add that I’m one of the very lucky ones. In hopes of not jinxing my luck, I’ve been on relatively mild cycles, with highs only of KIP 7 to 8, for at least the last 10 years. I can’t remember the last time I had a 9 and am not even sure I ever had a 10. Although I vaguely remember my first year in university waking up to find myself banging my head against the wall. Memory is a fantastic thing though, I can’t really recall how painful that was....
It pains me to read the stories of you guys out there getting hit sooo much more and soo much harder, and I cannot begin to tell you how much I respect those of you with kids. To deal with CH when you have no – or relatively unimportant – responsabilities is one thing, but to deal with this and to have to keep going for the kids…. So a big hat off to you, mums and dads. And a triple one of those for chronics.
Lastly, I want to apologise for being a selfish cow, only frequenting the board when I’m in a cycle. Reading the messages, knowing I’m not the only one, almost physically feeling the warmth radiating from the replies, the support you guys show each other and the newbies, have made such a massive difference in dealing with my “dodgy hypothalamus”.
So, from now on, I will try to be a better person and rather than totally deny the existance of CH the moment my cycle ends, stay around here to offer my support, or at least a listening ear/post (?), as so many of you have done, even if it was unwittingly, for me.
The pain is no less, but coping has been so much easier. Thanks to you all.
In hopes that one day dodgy hypothalamusses will merely be a footnote in the medical history books (and I can frame mine to the bedroom wall),
PF lives for all,
Heleen
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