katie22
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I Love CH.com!
Posts: 4
Macon, georgia
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Hello everyone! This is my first post and I'm seeking any and all advice you have to offer. However, the topic of this post is to see if anyone has advice on stopping a cluster before it begins when experiencing shadow pain.
First off, a little about myself: I'm a 22 year old female and I have suffered from cluster headaches since I was about 17 or 18. When I first began having attacks, they were not initially alcohol induced (but soon after, I connected the two), they would wake me up around 4 AM, and I was scared to death. Of course, I thought something was deadly wrong with me. However, I went through all the CT Scans and tests, and was diagnosed with cluster headaches. I've taken a variety of preventatives over the years. The last 2 years I've taken 40 mg propranalol twice daily. I will admit, sometimes I question the effectiveness of this medication, but I'm too scared to quit taking it. Up until recently, I have not had insurance, so help for me was practically nonexistent. Now, I'm prescribed 12 sumatriptan shots a month which cost me a whopping $55 for 4 at time after insurance (I'll get back to this in a minute).
I'm a college student and work crazy hours so my sleep schedule is whack. The restaurant I work at doesn't close until 2 AM on weekends and 1 AM on weekdays so I often find myself getting less sleep than I should. However, I LOVE to sleep and on the days I don't have any commitments I can easily sleep 12+ hours. I'm pretty sure my irregular sleep schedule does not help my clusters at all, but, for now, there's not much I can do to change it. I've been pretty fortunate as far as how often I get clusters. During a bad week, the most I've had has been about 3 CH.
During a cycle, I am guaranteed to have a cluster the day after drinking. They are pretty textbook as far as symptoms, but some things vary. They are always on my left side, my eyes water, my nose runs, I yawn like crazy - all that good stuff, but I don't have the redness or drooping eyelid. I often experience nausea/vomiting with them also. The major difference between my clusters and textbook clusters is my CH can last for hours. I've rarely had one last under an hour and a half. They are normally 3-5 hours. In the last year or so, I started having the "shadow pain", people thought I was crazy when I tried to explain it to them - when I'd tell them I knew there was one just waiting to attack. "Quit telling yourself that, you're gonna 'think' it into existence." I'd even had people telling me, "it's just a headache". I began doubting my own sanity for a while there and wondering if maybe the doctors had missed something, that they weren't actually clusters because nothing on the "official" cluster headache websites said anything about this - they all said that a cluster came out of no where with no warning (which is how they began, and still occur sometimes). For me, shadows are a pain/pressure deep into the left side of my temple - it's simply forewarning me of an attack soon. Then I came across a forum where someone referenced shadow pain and I found some sort of relief knowing some one out there understood.
I hate to admit it, but clusters are fascinating beasts. The fact that I, and other sufferers can distinguish between a shadow, a cluster, and other types of headache is beyond me. As I said earlier, I used to wake with them around 4 AM, but now, most of the time, I'll wake with shadow pain that will eventually evolve into a cluster (this is how it goes the day after drinking too). However, for the past 3 days I've woke up with shadow pain and have already used 2 shots. Which brings me back to the topic of this post: does anyone have any advice to stopping a cluster attack when experiencing shadow pain? As I mentioned earlier, the injections are pretty expensive and I really hate to use them unless it's a full blown attack, but they are the only relief I have found thus far. O2 is pretty much not an option here. I live in Georgia, USA.
Thank you for reading and thanks in advance for advice! -Katie
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