zoford
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Tennessee
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Hello to CH
Hi, I want to write something witty or charming but the truth is I am struggling. I was recently diagnosed with episodic CH, which came on very suddenly last September.
This is how the neuro-opthamologist presented the information two weeks ago (I like this doctor a lot, btw): "Oh! You have cluster headaches!" When I started confessing embarrassing facts about the year, my writhing in pain, weeping, my eye going weird and small, my vision going out, hot face, hot body, congestion, weird agitation and restlessness that seemed partly because of the pain and partly its own thing, and on and on, he said, "Your autonomic nervous system goes haywire. Nothing that happens during a CH counts as a symptom that you need to worry about. We just need to get you set up with some oxygen."
I left feeling very triumphant. After a year, I was finally diagnosed. I returned to school. And after a long confusing battle with student health, I got some oxygen. Which turned out to be more confusing than what I'd imagined. But I'm getting better at it.
I have one year of funding left in my program because I lost last year, and my profs are waiting for me to be cured and finish my dissertation. But just like last September, the attacks came on back full swing (almost the very same day) after almost no attacks this summer.
Back at student health, the doctor said, "We've never had anyone with this problem." When I said, "I'm also new to this," he looked suspicious. Anyway, I've been reading this board and the clusterbusters board and a billion peer-reviewed articles stolen through my library. My problem is, I can barely leave the house. All I do is try to stop the attacks. And when I can't, I lose all hope. And I'm afraid by the time I get it sorted out, I'll have missed my whole grad program or my whole life. And maybe this is as sorted out as it gets. I met with my advisor on Friday and I had nothing to report; all I have done is try to figure out how this oxygen thing works and go to doctors. And this is like the 5th time we've had that meeting.
I am also far beyond the reach of my friends; they feel helpless; at this point they don't even know what's going on. I don't know how to reassure them and also explain what's happening, because I do not feel reassured and I feel terrified myself. I'm hiding in my apartment sucking on oxygen.
I'm not really sure what the point of all this was. I'm scared. I'm afraid this is taking my life from me. I'm someone who fought pretty hard for the privilege of reaching adulthood, so this feels like an odd joke to be arriving now.
I have read lots and lots on here. I'm hoping for something to get a little easier. Or if I'm never going to finish my dissertation and I'll just spent my life feeling hazy and dumb and exhausted and then freaking out from pain, etc, I guess I have to make that okay. What do people do? I mean, for the hope part? I'm afraid of the way I feel for 60 % of each day. Then in between, I feel like, what just happened to me? And then it's happening again. I hope some of this sounds familiar. Best, E
History part: I lost my vision last September in my right eye and after 9 months was diagnosed with orbital inflammatory syndrome. Which is now under control(ish). But the pain changed dramatically after the first week or so -- instead of hurting to move my eyes, it hurt to have an eye on the right side. It never even occurred to me to think of it as a headache. Student health sent me for gazillion diagnostic tests, so I do not have many scary diseases. And last time I went to the neuro-opthamologist (he's three hours away) he added the diagnosis of episodic cluster headache.
Since then, been on O2, hard to get it though. After two weeks of freaking out, I convinced my primary care to give me 2 6mg imitrex injectors (before he was giving me 5 mg nasal spray-- I don't even know what that's for. I used it because it calmed it down a bit and I could teach my class, but each time I did, I spent the rest of the day in circles and circles of agony, with the oxygen not helping. I'm sure the 5 mg spray was doing something to me, making it worse, but I've given up on convincing.
I used one inject and thought I was about to die. Very painful all over my head and neck, my chest, pain shooting down my right arm. I spent a while on my couch with my face against the pillow just hanging out, to kind of see if I was dying or not. It wasn't too bad because the cluster pain was gone. I've since heard that I did not adequately prepare for the side effects.
I hesitate to put my history because orbital inflammatory syndrome and cluster headaches in the same eye are a ridiculous combination. The neuro-ophthamologist wasn't phased by this, but I now have two conditions no one, including myself, has ever heard of. He said the clusters were likely triggered by the inflammation, but they must have been coming for me anyway. Compared to a cluster attack, inflamed extra-orbital muscles feel like, a sprained ankle. Compared to a shattered bone sticking through your leg.
I need help but don't even know what to ask. I just try to survive. I'm afraid of losing everything.
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