Misdiagnosis? (Looong first post, thx 4 ur patience)

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Posted by Selene ( on November 05, 1999 at 11:47:23:

Wow - I just found this message board and was trying to get up to speed by reading 'all' the past posts, but that ain't happening anytime soon (you guys are a prolific lot). I probably should read for a month longer before posting, but I'm hoping you can give me an opinion FWIW.

Monday last was diagnosed with CH and given a prescription for Verapamil (that's actually how I found you, I was looking up Verapamil) to take daily and another for Diclofenac (Voltaren) to take for the "really bad ones." But in reading through the posts and looking at links and reports, I'm wondering about the diagnosis. Don't take this wrong, _please_, but I don't suffer the kind of pain you do. So, with apologies for yet another 'is this CH' post, here's me:

I first went to see the neurologist after I mentioned to my regular dr that my headaches were bad enough that I was periodically missing work (that always gets doctors excited). I've never determined a pattern, and though I get a lot of headaches (more on that in a minute) I've never actually been able to definitively predict when one will be BAD. The reason my neuro said CH is I have the classic one-sided, extreme pain, nothing helps, sinus-pain, running-nose, weepy-puffy-eye attack. BUT these last a minimum 48 hours (occasionally 72) and then they kind of fade out and are usually gone for months. On only two or three occasions can I remember one ha immediately following another, and IIRC these were precipitated by alcohol. The dr prescribed the Diclofenac these, and I'm supposed to take it as soon as I think a BAD one's coming on, but since I can't ever really determine, until I realize, hmmm, the aspirin doesn't seem to be helping, I'm not all that certain about this approach, especially since I'm not supposed to overlap it with aspirin.

I _never_ see auras or feel nauseous and am not sensitive to light or sound. I do feel kind of 'tender', I don't want to be too strenuous. I am very sensitive to smell at these times, particularly perfume kind of things, and if anything triggers, that's it. I usually find my thinking is impaired and I'm a little clumsy, so I go home and isolate myself just as a way to deal with the pain. I have asked to be shot and put out of my misery, but I haven't ever found myself banging my head on the wall. I usually use ice packs, but they only kind of numb things and distract me. Hot showers help during the actual shower, but the pain returns full blast after the water's off my head. I've tried really loading up on aspirin and pseudophedrine (more below) but that usually has no effect once the pain has gotten a grip. After the pain subsides, I look back and it's like there's veil between those days and the present - kind of like, how was I even coping?

Every few months, I go through periods of time where I get headaches every day. (I am more sensitive to alcohol at these times, and can inconsistently trigger a "bad" headache - especially if my water consumption is low). These can come on quick or slow, usually between noon and 4 am, always last several hours, typically no more than once a day, and since I went off the Pill, usually respond quite well to aspirin (not acetaminophen at all and ibuprofen gave me side-effects). If they get worse, the addition of pseudophedrine helps (and was I ever pissed when they stopped selling that in big bottles). I've had these just about my whole life, as have my mom, dad, brothers, uncles, grandparents (they should have weeded my strain out as a weak link generations ago) so I don't find they interfere with my life very much. But these are why she prescribed the Verapamil. I'm to take 120 mg 1x daily to see if it stops the daily attacks, because she doesn't want me taking aspirin long term (?).

So with apologies for the way-too-long post, I'm wondering if I should really be getting on the Verapamil bandwagon. I asked about side effects and she said none, but in looking at past posts, she was a-lyin to me. And also in reading the medical paper here, I don't think I'm exhibiting the cluster headaches, except for the one-sided, weepy-eye pain, but they last much longer than 'typical' chs.

I know I need to talk to the neurologist about this, but she was referred by my regular dr, so I don't know her experience with CH, that's why I'm here. Is it possible to have 'mild' ch? Is it possible to have migraines without nausea or light sensitivity? Can one ch last more than a few hours? Any thing else you recommend I read to better inform me for my talk with the neuro? Or should I just try the Verapamil and see what it does? My concern here is, how will I know if I'm in a ha free period because of the Verapamil, or just because it happens to be one of my ha free times?

THANKS so much for bearing with me. I've learned a lot from your posts and from this incredible web site. I look forward to your thoughts and comments and recommendations and I wish you many pain free days.


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