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Topic: New series (Read 232 times) |
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Jake
New Board Newbie
Brit with CH
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Posts: 8
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I was diagnosed with clusters about 8 years ago and I'm one week into this years attack. I'm getting a CH every night which is my usual MO. However, to make things more fun I'm now getting the little buggers during the day as well. I'm sick of taking meds - verapamil makes me feel dizzy and seriously messes with my balance, sansert is plain horrible, zomig does a little but only after about 20 minutes, I got the best result with maxalt but my insurance company thinks it appropriate that I pay $120 for 3-days worth of meds! Oxygen has been helpful before. I'd like to hear from anyone about alternative treatments - my wife asks what she can do when my head is exploding and so far she's been reluctant to use the meat cleaver to remove the left hand side of my head. I'm tired of these bloody things, I'm tired of not sleeping, I'm tired of being afraid of going to sleep, I'm tired of being frightened to tell someone how much it hurts. I feel like I need to rant - I've been pain free for around 18 months and this cycle has appeared from nowhere.
Thanks,
Jake
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K.
New Board Veteran
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Posts: 127
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Re: New series
« Reply #1 on: Oct 7th, 2003, 9:58pm » |
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Sorry you're in pain. I know how you feel as do lots of us here. If you need to rant this is the place to do it. Hang in there because you are stronger then the beast. You will beat this just like you have many times before. Get your O2! There's lots of great info and good people here. Hang in there.
Wishing PFDAN,
Karen
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TxBasslady
CH.com Alumnus
New Board Hall of Famer
Bass fishin' is a h00t It's the catchin' that sux
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Posts: 3201
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Re: New series
« Reply #2 on: Oct 7th, 2003, 10:03pm » |
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Hi Jake
You came to the right place for understanding and support. Sorry that you suffer with these ha's.
That's the way the beast works....comes around when you least expect it.
My visits always came within an hour or 2 after I went to bed. Like you, I was afraid to go to bed, tried like hell to stay up past the time that the beast made his visit. But you can't fool him....when I stayed up past that time, he just came later. 
My husband would sit with me and handle the ice paks I had to have for my neck and my eye. Other than that, he felt totally helpless.
My doc put me on a Prednisone taper and it stopped my cycle. I have been pf for 28 days now. However, I refuse to let my guard down. Still take my meds everywhere I go.
As far as the ranting, feel free to do so. That is what this board is about.  You can always come here and rant and rave and not have to worry about it. There is usually someone here 24/7. Just know that you are not alone.
And as for your wife, she is certainly welcome to come here and post also. There is a great section for supporters. Both of you should take some time and read some of the posts. You will find some great information and alot of great support and help. Also read the links to the left, and find some very helpful ideas on how to handle this.
Really sorry that you are suffering....but you have come to the best place in the world for help.
Best wishes to ya, Jake.....and to your wife, also.
Sending lotz of pf vibes your way Stay in touch with this board and let us know how you are doing.
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
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cootie
New Board Hall of Famer
sumday I'm gonna be sumbody........ ..
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Re: New series
« Reply #3 on: Oct 7th, 2003, 10:17pm » |
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Hi Jake...I WISH there was a miracle cure....I wish there was a cure for alot of things.....you'll learn alot here and make lots of new friends.....stick around ! Pam that is cureless
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
    
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Posts: 14968
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Re: New series
« Reply #4 on: Oct 7th, 2003, 10:41pm » |
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Welcome aboard Jake and you have certainly found the place to rant. We all do it and have gotten good at it.
Stick around and you'll find some good ideas on dealing with this horror. Alternative:
Here is a link for a technique I and others have found successful. I hope you give it a try:
http://www.netsync.net/users/charlies/
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Jake
New Board Newbie
Brit with CH
Gender:
Posts: 8
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Re: New series
« Reply #5 on: Oct 7th, 2003, 11:56pm » |
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Thank you to all of you. It's weird - in some ways I'm ashamed of having clusters. I try to explain what the pain is like to friends/family when I'm not having a HA and I can't come close to describing what it feels like. When I get a thumper I try to relax and breath through it - visualization sometimes helps. I imagine knocking a hole in my skull with a hammer so the pain can "flow" out. I have no intention of actually doing this but in some ways it helps. I'm going to see my nurologist tomorrow - I really am not keen on the idea of spending the next 2 months taking verapamil. I feel low and scared. It's incredible to receive your support and I treasure it. I'll check in tomorrow . . .
Sleep tight! 
Jake
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Mr. Happy
CH.com Alumnus
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If I can do it, it ain't art.
 
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Re: World series
« Reply #6 on: Oct 8th, 2003, 2:31am » |
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on Oct 7th, 2003, 9:38pm, jakereason wrote:I'd like to hear from anyone about alternative treatments -
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See _THIS_ site.
Alternatively yours,
RJ
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| « Last Edit: Oct 8th, 2003, 2:39am by Mr. Happy » |
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May those who don't want any
Have memories of never getting any.
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Turts
New Board Hall of Famer
Ever danced with the devil by the pale moonlight
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Re: New series
« Reply #7 on: Oct 8th, 2003, 3:50am » |
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Gday Jake,
Welcome home, just make sure you shut the gate behind you so the dog doesnt get out.
Feel free to rant and rave all you like, youll recieve a heap of moral support from these lovely people.
As for the alternative treatments, stay tuned Im sure youll see a theme to finding your Clusterbusters.
P.S. be weary of alternative treatments
If jonny recomends going to a pubilc place, standing in a the rain, only wearing your underwear singing its "raining men", while juggling "female sexual aids" it DOES NOT work.
Well at least it didnt for me.
Turts
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'I'm very brave generally,' he went on in a low voice: 'only today I happen to have a headache.' (Lewis Carroll)
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Surf
Guest
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Hold on Jake it will pass and you know it will, stand tall and remember you must not quit.Surf...
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Opus
New Board Hall of Famer
(Insert witty comment here)
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Re: New series
« Reply #9 on: Oct 8th, 2003, 8:20am » |
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Jake,
First I sleep propped up to stop the wake ups and limit sleep to stop the morning Ch's, both have stopped helping but did help in the past, here is a link for more treatments.
http://www.clusterheadaches.org/resources/non_script_treat.htm
PM or email me if you want to know about the natural abortive I now rely on.
Opus/Paul
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Zed-Zed-nine plural-Zed alpha,
There is no place like home.
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Hirvimaki
New Board Hall of Famer
Quod me nutrit me destruit.
 
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Posts: 1105
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Re: New series
« Reply #10 on: Oct 8th, 2003, 8:47am » |
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Jakereason,
Welcome. I'm sorry you have to be here, but this is THE BEST place for support and understanding. These folks have gotten me through a LOT.
Hirvimaki
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"What makes us discontented with our condition is the absurdly exaggerated idea we have of the happiness of others."
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