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Topic: Greetings... (Read 509 times) |
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clusterf_ked
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Greetings...
« on: Oct 9th, 2007, 10:35am » |
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Hello to all you fellow clusterheads and lurkers...just wanted to introduce myself before I move on to the other boards. Here's my story, stats and strategies:
My Story
First developed severe nighttime headaches about 8 years ago...symptoms eventually carried over to daytime...convinced I had a brain tumor or something sinister. Met with primary care doc and neuro, was given a brain MRI which came back negative. No mention from docs about CH, so lived for the next 5 years with these pesky annual headaches, but without any relief or treatments during my cycles. Found this site some time ago and self diagnosed CH...went to a new neuro a few years ago and had diagnosis confirmed. Started using Imitrex as a first line abortive...this has helped with the pain from severe hits, but has not addressed all the other "baggage" that comes along with being a CH sufferer. I have a demanding job with plenty of travel...I've been hit while flying, driving and during presentations in front of coworkers. My family and colleagues are for the most part supportive and understanding, but as you probably know, they don't really understand what's going on inside my head.
My Stats
- 38 year-old Caucasian male
- Non smoker, moderate drinker (mostly red wine)
- Episodic CH for at least 8 years
- One annual cycle, 5-8 weeks in duration, intervals of every 14 months; affected on left side of head
- Cycle usually begins with unmistakable shadows for a few days, leading to a major hit to kickoff the new cycle
- Mix of nocturnal and daytime attacks; average 3-5 major hits per week when in cycle, with frequent shadows and pulses
- Also diagnosed with moderate sleep apnea; have tinnitus in left ear and a benign venous angioma on left frontal lobe; cervical disc disease with herniated disc and symptoms primarily impacting left side of neck
My Strategies
- Preventatives: none tried
- Abortives: neuro finally prescribed nasal Imitrex (20mg) two years ago, which I use for most moderate to severe attacks...usually (but not always) find relief within 45 minutes, but I'm often left with persistent shawdows; also just filled script for SC Imitrex, but have not used so far;
- Alternatives: while in cycle I take daily dose of 4 Aleve, 2 kudzu capsules, 1 multivitamin, and 3-6 mg of melatonin (before bedtime); mixed and uncertain results...the melatonin helps me sleep, but the breakthrough headaches are brutal, plus mel makes me feel either really good in the morning or really crappy and irritable; not sure about the kudzu...it seems to soften the major hits, but not the frequency
I'm very grateful for this site and how it's brought together this unfortunate community of sufferers. I consider myself lucky compared to some of the folks with more frequent or intense CH, but in reality any level of CH is a very bad thing. Hope we all can find pain free nights and days, or at least maintain the courage to not let the pain win.
stevo
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DennisM1045
New Board Hall of Famer
One wave at a time!
  
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Re: Greetings...
« Reply #1 on: Oct 9th, 2007, 1:25pm » |
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Hi Stevo,
Welcome! It's about time you came in to sit and talk instead of just staring through the windows. There was talk of a peeping Tom in the neighborhood 
Anyway, good summary! You haven't tried O2? Why not? It doesn't travel well on planes but I don't drive anywhere without it. I've been seen in many parking lots kicking beast ass with my face hidden inside a mask. You get some funny looks but you get quick relief too. Imitrex is great but use it sparingly or (from what I understand) it'll loose its effectivness and possibly stop working for you.
You are right, Quote:| "any level of CH is a very bad thing" |
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Welcome to your new home on the Internet. I'm glad you are here but I'm sorry you had to find us.
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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clusterf_ked
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Re: Greetings...
« Reply #2 on: Oct 9th, 2007, 4:14pm » |
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Thanks for the welcome Dennis....
O2 is next on my list to discuss with the neuro. Just hate the idea of needing to lug a tank around (it won't fit in my pocket like a dose of Imitrex!).
stevo
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Brew
CH.com Alumnus
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Low Four!
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Re: Greetings...
« Reply #3 on: Oct 9th, 2007, 4:24pm » |
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I keep O2 in 3 strategic places: home, car, work. That way I can always get to it relatively quickly. Even when I'm in cycle, I don't feel like I'm lugging anything around unless I'm replacing a depleted tank.
If you can get past these steretypical notions, you may just find that you don't need that Trex, which is MUCH harder on your system.
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Always remember that you're unique, just like everyone else.
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