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Cluster Headache Help and Support >> Cluster Headache Specific >> Worst in over 20 years of ECH attacks.. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1362539353 Message started by Joel1955 on Mar 5th, 2013 at 10:09pm |
Title: Worst in over 20 years of ECH attacks.. Post by Joel1955 on Mar 5th, 2013 at 10:09pm
About 20 minutes ago, the beast just turned me loose after the most excruciating 70 minutes I've ever spent and I've been suffering with ECH for over 20 years now. Before I got turned on to Imitrex and O2 I thought I'd experienced a KIP 10 or so, but nothing like this one. What happened? I've been in an episode for about ten days, so far, on a prednisolone therapy, that started at 60 mg per day and is now throttled back to 40 mg. I had a bad one yesterday morning that hit me in a training course and I'd forgotten to bring my Imitrex (I'd been headache free for a couple of days), so I suffered through it the old fashioned way. When it came on, I drank some Rock Star energy drink, since it was all I had, and who knows, I thought it might have mitigated it a bit. It went away after an hour and a half or so. Today, I was headache free all day, and even completed pistol training on a range. Came home tonight and went to Red Lobster with the wife, came home, had a couple of cups of decaf with creamer, and the ache started. Drank some Rock Star, which didn't even phase it. Did nasal inhaler Imitrex and the beast kicked into high gear. I'd tried the Imitrex subcutaneous injectors last week for the first time, but they played havoc with my heart rate and blood pressure (though they did stop the Beast) so I went back to the inhaler. I've never had one like this was - the beast was throbbing and surging, I was whimpering, crying, pacing, with extreme light sensitivity. Felt like my head was going to explode. I do not know how I got through it except the the wife was praying hard and I was too, although I was cursing the thing as well. Thinking the food and drink might have been the triggers, I emptied my stomach and the thing subsided. I don't know how I could ever take another like this. Why did this happen? Of course I don't know, but I suspect the trip to Red Lobster should occur again until I'm clear of the episode. I also think the Rock Star really pushed the beast's throttle forward and negated the Imitrex. Any ideas?
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Title: Re: Worst in over 20 years of ECH attacks.. Post by Joel1955 on Mar 5th, 2013 at 10:56pm
I'll consider it. Thanks for the heads up. I neglected to mention I'm on 360 mg verapamil, btw.
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Title: Re: Worst in over 20 years of ECH attacks.. Post by Joel1955 on Mar 5th, 2013 at 11:10pm
Giuseppe - looks like its worth a try. Are you using it?
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Title: Re: Worst in over 20 years of ECH attacks.. Post by wimsey1 on Mar 6th, 2013 at 8:14am
Some have had good luck with the nasal spray (like Zomig) but I had to resort to Migranal, a DHE based spray. Still, for immediate relief nothing beat the imitrex injections. That rapid heart beat/full flush feeling is reduced somewhat by the imitrex tip at left, but for me, it was a small price to pay to aid in aborting the beast. Sometimes the O2 didn't help, but rarely could a hit stand up to both the shot and the 60lpm O2 along with an energy drink. Fortunately those were rare instances. I would encourage you to play around with what you have, and consider asking your doc to up your verapamil. That's still a pretty low dose. blessings. lance
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Title: Re: Worst in over 20 years of ECH attacks.. Post by japanzaman on Mar 6th, 2013 at 9:10am
Pretty much a classic case of the beast changing the rules as he goes. You might need to re-explore other avenues of treatment if the usual weapons aren't working. Good luck.
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Title: Re: Worst in over 20 years of ECH attacks.. Post by Guiseppi on Mar 6th, 2013 at 9:46am
Yes I'm on the D-3 regimen. I've been on it almost 3 years and have been cycle free. First time I skipped cycles in over 30 years. My 25(OH)D level tested at 87 ng/ml, well within what Batch calls the therapeudic range.
25(OH)D is a different form of vitamin D that has already been metabolized. D3 is merely the form of vitamin D that we consume that is most readily metabolized by the body. I stay on the maintenance doseage permanently now. Closest thing to the "C" word......cure ;D....I've seen to date. Said goodbye to my imitrex, energy drinks, lithium, oxygen....it's a beautiful life! Joe edited cuz I suck at details! ;) |
Title: Re: Worst in over 20 years of ECH attacks.. Post by Joel1955 on Mar 6th, 2013 at 11:51am
Thanks all. I'll follow up on these suggestions. I've seen a neurologist week before last, but I'm not sure she is a headache specialist. The verapamil does two things for me: mitigates headaches and helps with hypertrophic cardiomyopathy. My resting heart rate is around 55 right now (when not in an episode) and concern is that higher verapamil dosage will make heart rate dangerously low. I'm walking a tightrope here because of these two conditions - the meds have to balanced carefully. Nonetheless, good counsel. Started the D3 today BTW.
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Title: Re: Worst in over 20 years of ECH attacks.. Post by Guiseppi on Mar 6th, 2013 at 11:57am
Hoping it proves the silver bullet for you that it's been for me.
Joe |
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