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Topic: Diagnosed in Cleveland today... (Read 1425 times) |
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biscohead
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Diagnosed in Cleveland today...
« on: Dec 1st, 2005, 5:12am » |
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at the Cleveland Clinic. I must say, it was WELL worth the drive from Albany and worth the 4 hour HELL of a headache i endured on the carride home.  I have been having these episodes every year or so for 7 years and have been told they were migraines. It took a nosy jewish mother (who also was kind enough to clear her schedule to drive me to Cleveland since clearly i couldn't drive myself and obviously was unable to get on a plane) to realize that migraines was clearly not what i was suffering from.
Anyway, reading through this wonderful website, I realized how truly not alone I am. I had never even heard the term cluster headaches until a week ago, and now, perhaps I will be part of a community. I read some of the sad tales that are all too familiar to me on the front page.
I will be getting my first oxygen tank tomorrow. I guess I'm excited and scared? The only one i've ever seen was at my grandmother's death bed (50 year smoker) when I was 7 year's old. It seems strange to think that oxygen would help when all i can think is that it would hurt but hey, i'll try anything.
Anyway, good luck and best wishes to all of you people. It is great to know that I have a place to check in and find out more info on how to help myself and to chat with others like me. And my email is always on and open. 
Drew
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BarbaraD
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Hugs to ya
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Re: Diagnosed in Cleveland today...
« Reply #1 on: Dec 1st, 2005, 7:35am » |
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Well Drew, Welcome to Clusterville. There's always someone up around here. so anytime you need someone, help is available. Sorry you have to be here, but we're not a bad bunch. And we DO understand cause we're all going thru the same thing you are.
I've lost track over the years of who's where, but there should be some Clusterheads in the Cleveland area. Check up on it and if you get a chance have lunch with one or two. It's a great opportunity. You won't know what I'm talking about until you do. For some reason we clusterheads bond upon sight. Weird but true.
Read everything you can about CH and go to the docs with information and knowledge. They really are just learning about our condition and we must educate them.
Hope the O2 works for you. Try drinking black coffee also - that usually does it for me. I HATE meds. Only take 'em when I have to. But there are preventatives and abortatives out there so don't be shy - learn what they are. No sense in suffering if you don't have to.....
Hugs BD
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What don't kill ya, Makes ya stonger!
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lionsound
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breathe
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Re: Diagnosed in Cleveland today...
« Reply #2 on: Dec 1st, 2005, 2:01pm » |
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Hi Drew!
Welcome.
The O2 may seem a bit strange....like a helpless old people thing, but it is not at all. I remmeber the when the local oxygen place first pulled up for delivery at my door...a huge bright blue van! I'm sure all the neighbors thought I was at death door...LOL. The first time it works for you, you'll change your mind and hug those tanks!
Just think of it as another gadget in your home. No big deal. My kids think it's big fun to switch tanks for me. Make sure you've gotten a regulator that goes up to 15 lpm and non-rebrether mask. And there are also smaller size tanks that are more portable too.
Good luck and please keep us posted on how you are doing!
Be well and Pain free,
lionsound
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Beastfodder
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O2 and clusterbusters - naturally
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Re: Diagnosed in Cleveland today...
« Reply #3 on: Dec 1st, 2005, 3:09pm » |
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Whatever you've gone through in the past get better from here on in. Welcome aboard.
Good luck with the O2, keep reading and finger's crossed,
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O2 and clusterbusters - naturally
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CHTom
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Re: Diagnosed in Cleveland today...
« Reply #4 on: Dec 2nd, 2005, 12:21am » |
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There is a great pain clinic in Rochester, NY. I think that the drive is less than 4 hours. It is in Rochester General Hospital and the doc to see is Gilbert Proper. I don't have the phone number handy, but you can find it on the internet-just a suggestion if you want to go somewhere closer. Dr. Proper knows a lot about CH, is very empathetic and an excellent doctor. He can also refer you to an excellent neurologist just down the hall from his office, Dr. Harold Lesser. These two guys literally saved my life after my episodic CH became chronic in 1996-something for you to consider. Good luck and sorry that you had to join the club, but welcome!
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biscohead
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Re: Diagnosed in Cleveland today...
« Reply #5 on: Dec 2nd, 2005, 3:09am » |
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Thank you all very much for your responses! I have been living with this thing for years...misdiagnosed the entire way. I've been calling it migraines the entire time...also living with regular migraines as well which of course are small potatos.  But I feel like I'm on the road to recovery, or at least the road to understanding.
Today I had my second acupuncture session. I highly recommend this treatment. It has curbed the pain SIGNIFICANTLY, at least for a couple of days after the treatment. I assume others on here have tried it. I am going to look around and see if there are any posts about it.
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Jasmyn
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Re: Diagnosed in Cleveland today...
« Reply #6 on: Dec 2nd, 2005, 3:13am » |
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Hi Drew and welcome!
You are right on this one and that is that you'll never be alone again, we are all here for each other.
O2 is not for dying it is the wonder "drug" here for living!
If you can get it use it and it has no side effects.
Quote:| But there are preventatives and abortatives out there so don't be shy - learn what they are. No sense in suffering if you don't have to..... |
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What Barbara said here is very true, look on the left hand side, there you'll find a lot of info.
PF wishes to you.
Jas
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Jazz 
Madness is proclaimed by society’s inability to accept its own infallibility
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