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Topic: Newbie to board (Read 654 times) |
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FK5
New Board Newbie
I love YaBB 1G - SP1!
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Newbie to board
« on: Apr 24th, 2008, 3:53pm » |
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I was diagnosed with CH 4 years ago in the emergency room. Actually on the floor of the emergency room.
They gave me oxygen and a pain pill. Each year, I waited until it hit a Kip 9/10 to do anything. I just thought this is what I had and had to endure the pain of it. Luckily, each time I hit the the 9-10 pain it was that day and two to follow and the cluster was over. I realized now that I dealt with shadows for weeks to a couple months. I also realized that it ain't good to share vodka with the enemy.
Dealing and listening to a emergency room doc was my problem. Again, He told me there's no cure and I don't have a brain tumor so I thought oxygen and pain pills was the answer. So the emergency room was there if I needed it.
I didn't know about dealing with this until I looked it up on the internet. I know I should have done it sooner but once they were gone, I didn't want to even think about them until I had to. Anyway, found the board and it really found it to be helpful from an emotional standpoint and a medical one.
I get CH from March through May. This time, I went to Diamond Headache Clinic in Chicago in February .
I was put on Verapamil for daily preventative. Dexamethasone when intensity increases to a point I can't continually handle. Migranal for an attack if needed and oxygen. When I called for the appointment the first one was in 6 weeks. I then said I was diagnosed as having CH. Within a moment the schedule was open for me to come in whenever I could make myself available. At least they know the difference between migraine's and CH.
Since taking the Varapamil, I have not been above a Kip 4 and been 1-3 consistently. Which in the past, I would say I was always ranging from a 5-7 daily. I got nervous at the consistent kip 4 and took the steroid which did it's job but I don't know if it was going to get worse or not without the steroid. Didn't want to find out either. I have not used the Migranal yet and hopefully won't have to. I do use the oxygen nightly at 15 for 10-15 minutes at the slightest sense of shadows. Up until this point and knock on wood with your hand not head that I've been somewhat comfortable through this cycle "thus" far and sleep through the night without any issues.
Here's the kicker to my story. I went those years with only my wife knowing that i had these. I was embarassed to tell others. I just made myself vanish for those times I was hit. I finally had to tell my parents because it was happening while they were over at my home. Two hours later after my CH was over I saw my mother was still there and she sat me down and told me that she began getting clusters at 32 years old. She hid it for the same reasons all those years. Telling us and people it was a migraine rather than a CH because she didn't want people to know what happens when she hit a level 10 pain. The migraine was something people either had or saw somebody having that can be understood. Seeing a level 10 CH is something out of horror story.
Needless to say, the board and my mother have been such a help. I also have heard from a lady named Jan that also has been a blessing.
Good luck to everyone!
FK5
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MJ
New Board Hall of Famer
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Re: Newbie to board
« Reply #1 on: Apr 24th, 2008, 5:04pm » |
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Hi FK
Welcome home.
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MJ
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Guiseppi
CH.com Alumnus
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Re: Newbie to board
« Reply #2 on: Apr 24th, 2008, 5:08pm » |
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So glad you found us. Still amazes me the level of comfort my stupid E-Tanks give me when I'm on cycle. I used to be so terrified of an attack I'd damn near start crying as soon as I felt the tingle start. Now with my lithium, 02 and the occasional imitrex jab, we're on even fighting ground!
So glad you found us, welcome home! 
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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jon019
CH.com Alumnus
New Board Junior
"Ya gotta believe!"
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Re: Newbie to board
« Reply #3 on: Apr 24th, 2008, 8:31pm » |
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Welcome FK5,
That was a wonderfully well written intro. The opening line really grabbed me, it was "funny" in a way only a clusterhead could appreciate.
Thanks for sharing. Glad you are finding some relief
and that you found "home".
Regards,
Jon
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"The beginning of wisdom is to call things by their right names." (that's cluster headache doc)
Chinese proverb
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Jonny
CH.com Alumnus
New Board Hall of Famer
Give me a shovel Ill dig my own grave!
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Re: Newbie to board
« Reply #4 on: Apr 24th, 2008, 8:37pm » |
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Your home.....start reading!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
  
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Re: Newbie to board
« Reply #5 on: Apr 24th, 2008, 8:54pm » |
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Quote:| Still amazes me the level of comfort my stupid E-Tanks give me when I'm on cycle. I used to be so terrified of an attack |
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Actually Guiseppi has a "thing" with his 02 supplier. His wife is jealous. 
What I am trying to say is we hate that little green tank because it's ugly, but for those of us who know 02 is a life-saver we look at that tank and the one who delivered it with awe, admiration and love. It relieives us of our pain.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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