To Carl D, you're not alone (long!! )

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Posted by Henk ( on November 02, 1999 at 07:02:50:

Hi ..... Carl ( and others)

I'm sorry and happy to say you're not the only one... :)
Yep, that's the "double face" of CH and this website. It's so good it's there, but it's such a pitty that we need this info/meeting point because we all suffer. This site has been a great support for me so if somebody wonders: "Am I the only one?" I feel obliged to answer.... and I'm happy to.
Didn't post much here, but lurked a lot though :-) I'm from the Netherlands, 37,chronic for 4 years now. The first 3 years, I tried to fight as hard as I could to keep my job. But somehow that drained me totally so i had a complete burnout wich took me 6 months to recover last year. Took verapamil and for 9 months. Reduced the frequency, duration and severeness of the attacks to a "do-able" level. But about 4 months ago the stuff stopped working and the beast is back. Not just back, I even saw more horrible faces of it than i used to know.... OUCH!
I usually wake up every 2 hours in an 'alarm state'. It's like there is cotton in my head and after 1 minute: BANG. I'll run to the tank and hope to be in time before I get out of control. ( in which case it's difficult to inhale oxygen )
Last night 4 times..... But it was a beautifull morning so i grabbed all hope to go outside, have a hike and enjoy the pretty autumn I took a shower... BANG. Big bang...... Crying, cursing inside, grabbing the portable tank and hooking myself up again. After half an hour or so, again grabbed all hope and we went outside.... Thankfull: no more attacks till now.

This goes on and on and on and on and on and on. And indeed: I tend to get depressed, extremely tired, angry etc. And strangely enough: I can cope with that.... Living is like switching: good days, bad days. I have to suffer the bad ones, but still have the choise to enjoy the good ones :-) It's a simple thinking trick, but it works for me.

But i have to give up my job. last 4 years have been a continuous process of recovering and trying to get back to work and when I manage to do so: breaking down after couple of weeks or so.... Cant stand that anymore. I'm very well motivated, but I'm being slapped in the face by that same motivation when the disappointment follows. Quite a big loss, but I've dicided to stop that war. It's useless and I've lost it *many* times. This is a huge loss at one hand. But at the other hand it gives me an opportunity to do a lot of things for wich I couldn't find the time. I've (finally) learned not to feel guilty about that.... I'm in major pain each night, sometimes it's a strougle for life... Mandatory victim in a horror movie.... So if I make fun, I deserve it. The only thing I can do to "balance" the effects is having as much of a good time(s) as possible!!!
The most stupid thing to do is pittying oneself on a sunny day. It's also sometimes *very* hard to avoid!!
So when I need to cry, I cry. And grab myself together after that... and try to re-inspire myself by listening to nice music, petting the cats, playing the piano, looking at the blue sky and the birds in the garden.... All those little things I tended to forget about before CH.

So I guess you're not the only one.... And I'm affraid there are many more like us out there..... There are lots of postings about side effects of medication.... But what about side effects on your life?
Many people say: "stress must be involved". Well, tell me how to avoid it if you suffer from CH! Far more easier said then done. My neurologist is a good guy, but last time he looked at me saying: "Usually it's not that diffucult to treat". And I replied: "And how does that help me??" He was honest: "sorry, it doesn't, you're right".....

My spouse also takes the hits. He has to watch me suffer, he really wants to help at those times, but the only thing he can do is do nothing, except when he can get the tank for me, or bandage my leg when I run over the table .
I see the headlines already: "Guy hurt his leg while running away for pain". Well, it happened :-)
I hope nobody minds the smileys etc. That's how I tend to cope with it. If you turn the devil into a joke, you can do alot!

But I'm a lucky guy with my friend. ( Yup, we're gay, wich makes me extremely rare )
His reaction when I went out of control during an attack: "You'll wake me every time you have an attack!"
well: no way! One sleepy person per household is one too many in this case...... But he's really caring and doing a wonderfull job. *very* thankfull for that! But it needed alot of talking to get that far.

And for my friends? Somehow I've seemed to have lost a couple But the better ones stay!! And I even find new ones :)

I'm sick and tired of people telling me to "take an aspirine" or "avoid stress" or "it must be between your ears". The latter one is really clever: That's where it hurts people!!!
I usually reply like: "Geez, how come that everybody who doesn't have CH knows what to do, while people who have it are so desperate?" some people react with: "How do you mean?" "well, if I add all the tips and tricks of you guys together, there's nothing left for me to do/eat etc. and I'll be dead in 2 weeks" :-)

I've wished my two legs to be broken for many times.... I envy the folks with plaster around there legs:
"How did it happen? I'm so sorry for you! Does it hurt?? Do you need help?"

( Please get me right: I wish painfree legs for everybody!! )

But give me 2 broken legs, 1 after the other if neccesary..... If that cures my CH!!
There are coworkers who, after hearing the "CH story", reply: "Sure, I have headaches sometimes!" I get a gloomy look then and ask them: "And, are *you* afraid to loose your job because of them?"
( strange look follows.... ) "nope why?" "Well, then think before you speak please....."
And I'll walk away, afraid of becoming too angry, which is a waiste of energy :)

Though I'm not a religious person, I thank god alot of times for having the strength, the humor, the positive thoughts and the energy to live with CH, because somehow I manage.
But it sure aint easy!!

Guess I've vented enough, though there's much more that can be said about CH.
Reading back I realize that this is a quite chaotic posting, but if I vent, I vent :-)))

To all of you: hang in there, I'm trying to do the same thing......

Henk (Netherlands)

who ( because of the fire hazard ) doesn't wear wooden shoes :)

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