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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New Clusterhead with questions (pstd to General)
        
(Message started by: Phil the Desert Rat on Jan 13^th, 2006, 9:07pm)

Title: New Clusterhead with questions (pstd to General)
Post by Phil the Desert Rat on Jan 13^th, 2006, 9:07pm

Hey, all.

First, thanks for this site.

On January 1, 2006, at 1:30 in the afternoon, I joined your ranks. Never before having a history of headaches, I was terrified by what I can only describe as imminent death. I went from normal me to abject misery in about 5 minutes, terrified and bewildered by pain so utterly raw and intense that I was certain I had popped an aneurism in my head. Then, nearly two hours into it, it dissipated even quicker than it began. That first day, I had another in the early evening, and yet another woke me from my sleep. Since Jan 1, I get the early afternoon one dependably, the nightly one somewhat regularly (early morning, 3 a.m.), while the third one tends to lurk and strike out of the blue randomly. Mine begin over my right eye, and within 3 minutes, my entire head and neck are in excruciating hell. I feel as if I have rebar jammed up through both eyeballs and into the roof of both eye sockets, and as if I am being stabbed repeatedly through the top of my skull with ice-cold daggers. My forehead turns red, and to the touch I feel as if I am running a high fever, though I am not. While I don't experience a stuffy nose, my eyes both tear, and my right eye is half closed by the end of it all. The best relief I have found thus far is to firmly, rythmically bang my head into either a wall or the floor until it finally breaks.

I have missed nearly two weeks of work now, and have been gripped with shame, fear, and bewilderment when confronted with the thought of somehow explaining this to my employer. To that end, thank you for posting the "Letter to Employers..." on this site.

I have been diagnosed three times now by three different doctors, all of them telling me that I am experiencing cluster headaches. The first was in the ER, after a CT scan...he sent me home with Vicadin (which I now know from experience and from reading here that narcotics do NOTHING for these). The second came yesterday morning from my GP--she prescribed Verapamil (120 mg/day) and Ergotamine (one as soon as I feel a CH coming on, and one every 1/2 hour thereafter until CH abates). The third came from an ENT in the afternoon...he just wished me luck.

Today, I spoke to my HR director about FMLA paperwork. He asked me what was going on. I explained. And you know what? He responded, "Oh, Jesus, I am sorry to hear that. My sister suffers from those. I can't say that I know what you're feeling, but I DO know how debilitating they are..." In a nutshell, I am not to worry about my position, which is a huge relief.

So now I just continue to ride this first episode out, hoping that I will fall into the 2-week cluster, 3+ year remission category. Anything less than this would be just about unbearable. I am really scared about what this condition might portend for the rest of my life.

My questions:

1. Is it normal, after several days of these, to have a constant "low-grade" headache between CHs?

2. Is it normal for the whole front of my head (skin, hair, and eye muscles/nerves) to feel like a million exposed nerves even between CHs?

3. From your experiences, is 120 mg Verapamil/day to small a dose (a pharmacologist friend of my partner suggested nearly triple to quad this dosage, if I understood him correctly)? Additionally, is it better to chew up the Ergoatamine tabs and ram the pulp under my tongue (I don't quite get the sense of taking a pill with a coating on it that will take 45 minutes to dissolve in my guts and work its way through my system, when the need is utterly immediate)?

4. Is short-term memory blur and/or loss normal?

5. Is there anyone else on here whose CH odyssey began coincidentally with a sinus infection?

6. Finally, I am seeing a neurologist next Thursday, who specializes in migraines and CHs. Are there any questions I as a newbie should be prepared to ask?

Thanks in advance to any of you who have read this far, and even more thanks to any responses.

--Phil

Title: Re: New Clusterhead with questions (pstd to Genera
Post by burnt-toast on Jan 13^th, 2006, 9:09pm

See response to your other thread.

Tom