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Topic: First Time Poster Long time Reader (Read 278 times) |
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Seable
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I love YaBB 1G - SP1!
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First Time Poster Long time Reader
« on: May 14th, 2006, 2:05am » |
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Hi,
I have been having CH for the past 10 years 2 to 4 cycles per year 3-5 weeks per cycle. they come usually around the change of the seasons. I didn't know what they were for a couple of years, and they scared the hell out of me, my mother died if brain cancer in 89', so I was always worried about that, anyway, I was eventually diagnosed correctly, and have been treated for CH regularly. I take verapamil as a prevent, O2, and Imatrex Nasal spray, or Maxalt. to abort. The past couple of years my cycles have been pretty easy...if you can call them that I mean maybe not really getting over a 7... pretty good right? Well February 2nd I start a cycle, I stop all of the things that I think are triggers, no drinks, hot dogs, kick up the verapamil, 7 weeks later the CH still there, but now I am hitting some 10's, and instead of a normal daily 3 headaches at regular times, they come at regular times,.. kind of,... but not really,... and sometimes i get a couple of days off, then bam, so my doctor tells me double the verapamil, but I am out of imatrex, and they wont give me a refill again till I get in to see the neurologist. in 2 weeks (thank god for O2)
Now I have seen the neurologist, they have added topomax to the verapamil, I am 10 or so days in, still having HA, traded Imatrex for Maxalt due to quantity they will give (18/mo) vs (12/mo) even though imatrex works better.
I have not been pain free for more than 3 days since Feb. 2nd, and I am getting a bit scared. I am an audio engineer; I have 2 daughters, and a wife. I work for Disney. I love my job, but am having a tough time keeping my attitude together. Everyone is tired of seeing me holding my head, and cringing, and I am tired of hearing people asking me "have you tried....?"
I am taking verapamil 320mg/d
Topomax 100mg/d
and xanaflex at night... I have a horrible neck bulge from twisting it during my HA's
I guess I just wanted to get on the boards and talk a bit. I must go Change my O2 tank
Bye.
Steve
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MJ
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Re: First Time Poster Long time Reader
« Reply #1 on: May 14th, 2006, 3:35am » |
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Hi steve
Welcome aboard.
Attitude is everything with these things. Its just as hard to keep that up as it is to fight the pain.
You will find many here to help.
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MJ
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mrnice
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Re: First Time Poster Long time Reader
« Reply #2 on: May 14th, 2006, 11:14am » |
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does your neck bulge go down when your not having an attack? When my neck starts to go thats how I definitely know I got one coming and its time to get somewhere i can rage on it alone... For years I believed my neck pain was associated with a slipped disk or nerve... tried everything, even exercise daily to try to strengthen the muscles around there...
When i was first learning about migraines and they would say there was an associated pain in the neck.. thats what made me sure i had migraines... but then I came across cluster sites and read accounts of people who also experienced neck pain.. which led to me now almost sure that I suffer from clusters.. I would like to better know how to explain my neck pain instead of simply neck pain to my doctor.. is there a mechanism at work in my neck that causes it to have a bulge and hurt?
thanks
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buckeyescooter
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Screw Fear!
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Re: First Time Poster Long time Reader
« Reply #3 on: May 14th, 2006, 11:30am » |
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Hey Steve...sorry you're going through such a rough time....send me a private message if you want to talk. I live in Studio City.....about ten minutes from Disney.....and have had these bad boys for over 20 years.
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Clusterheads are a rare breed.
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Linda_Howell
CH.com Alumnus
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Hearing is one thing. Listening is another.
  
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Re: First Time Poster Long time Reader
« Reply #4 on: May 14th, 2006, 3:49pm » |
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And Steve...if you want to talk to other Californians go here: 
http://www.calouch.org/cgi-bin/yabb/YaBB.cgi
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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