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Topic: thank God I found you (Read 1121 times) |
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cakelady
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damn I don't want to be here
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thank God I found you
« on: Dec 28th, 2003, 10:46am » |
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New here. 32 years with the beast. For years I had perfect 18 month PF breaks between cycles. 4 years ago I had a carwreak just as I was ending a cycle, it started all over and lasted 4 more months. PF ever since...until this week. Fooled myself, thought they were gone...Have only had 2 so far. But I know it is just the beginning...I am so scared. I am so glad I found you. Here I go again with the crappy effects of the Prednisone and Verapamil..Time to make friend again with the oxygen guy. damn, which is worse, the pain or the fear? OK in a few days it will be the pain, right now it's the fear.
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Pain is inevitable, misery is not.
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brain_cramps
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Re: thank God I found you
« Reply #1 on: Dec 28th, 2003, 10:55am » |
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cakelady
so sorry to hear that the beast has returned after a long absence.
Interesting that after a car accident that the beast returned quickly. Also interesting is the long PF time since the last cycle.
Any head trauma in the accident? (it doesn't seem to be a commonality, but curious nonetheless.)
ok --- ya better start reading... lotsa new info in the last 4 yrs.
good luck getting in to see your doctor, getting your meds and o2.
grant
P.S. you realize that you've got one of the shortest drives to the convention?
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Unsolved
CH.com Alumnus
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I'm still alive ?
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Re: thank God I found you
« Reply #2 on: Dec 28th, 2003, 11:04am » |
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Hey CakeLady ... I like your name (makes me hungry though)
Glad you made it here but sorry you had to.
Goodluck w/ your beast
Unsolved
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Renee
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May we all find some pf time! Is it summer yet?
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Re: thank God I found you
« Reply #3 on: Dec 28th, 2003, 11:15am » |
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welcome cakelady,
ditto on the questions that brain_cramps asked!
so sorry you are back!
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Elaine
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Re: thank God I found you
« Reply #4 on: Dec 28th, 2003, 11:25am » |
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Welcome to clusterville. I think the fear is just as bad as the pain sometimes. The fear I think can make it worst.
Just remember now that you found us you have many more tools to fight. Also it sounds like you have the right meds. Get that o2 as soon as you can.
Good luck
We are with you , your no longer alone 
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BlueMeanie
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Re: thank God I found you
« Reply #5 on: Dec 28th, 2003, 12:14pm » |
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Sorry to hear the BEAST has returned. I've read a few posts now that described some sort of accident that started a cycle. Interesting.
Looks like you are prepared. That's a real good thing.
Sending PF vibes your way.
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cakelady
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damn I don't want to be here
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Re: thank God I found you
« Reply #6 on: Dec 28th, 2003, 12:24pm » |
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WOW! support! As to the acccident, no head trauma. Screwed up a ligament in my neck, same side of my head as the HA. Neuro prescribed Flexaril and physical therapy. And of course another round of Prednisone. Had a few shadows headaches in the last 4 years, but no clusters ever developed.
Convention, what convention?
Will call the neuro on Monday. Who knows how long it will take to get an appt. His gatekeeper is a beast herself. She won't let me get rx without an appt. and then the Dr. says "Why didn't you just call me, you didn't need to come in." arggh
As to the name >cakelady< I'm a pastry chef.
Thanks for being here,
Christine
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Pain is inevitable, misery is not.
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Patrick_A
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Re: thank God I found you
« Reply #8 on: Dec 28th, 2003, 2:50pm » |
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Sounds to me like you are locked, loaded and ready to fire!
I didn't like the Prednisone and Verapamil side effects either. But they are 10x's better than a average CH!
Patrick
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Prense
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Re: thank God I found you
« Reply #9 on: Dec 28th, 2003, 2:51pm » |
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Welcome aboard Christine!
Chris
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ShariRae
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Re: thank God I found you
« Reply #10 on: Dec 28th, 2003, 3:07pm » |
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Welcome cakelady...
Sorry you had to find us though.. it sounds like you are prepared for the fight..remember we are here for you..so vent..ask questions...whatever you need to do to get through it...
And after your cycle is gone, please stay on the board and contribute what help,knowledge & support you can to someone that needs it...We can never have enough supporters!!
Huggs
Shari
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Jesus Christ and the American Soldier.
One died for your soul, the other for your freedom.
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Edna
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Re: thank God I found you
« Reply #11 on: Dec 28th, 2003, 4:22pm » |
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Hi Christine, welcome and I'm very glad you've found us too. Lots of support to be had here and loads of info for you too. Takes some reading time, but read a lot.
Love the name "cakelady"..........go ahead and join us in chat sometime and you're sure to hear us talking about food there!!!!!!!!! It's a bad habit we can't control...LOL
Hope you can join us there sometime at "headachesupportgroup.com"
pf wishes,
EDNA
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cakelady
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damn I don't want to be here
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Re: thank God I found you
« Reply #12 on: Dec 28th, 2003, 4:28pm » |
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Thanks for the welcome. Yeah, after 30+ years of this Sh%# I pretty much know what to do when they start. The only help I can be to anyone else is to tell them to fight their way through as many neuros as it take to find one who understands. And try not to let the bad ones kill you on the way.
I am also very grateful for the forum for our support people. My poor husband feels so helpless. He's watched these damn thing for 17 years. And I tell you, anyone who can stand by my for all this time, deserves a purple heart of his own.
Christine
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Pain is inevitable, misery is not.
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TxBasslady
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Bass fishin' is a h00t It's the catchin' that sux
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Re: thank God I found you
« Reply #13 on: Dec 28th, 2003, 4:28pm » |
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Welcome to the board, Cakelady.....
Can't add too much to what has already been said.
Someone usually always here 24/7. 
Feel free to come here and rant, vent or whatever you need to do.
Hope the beast takes it easy on you!
PF vibes,
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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Cerberus
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Whomever said that two heads are better than one?
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Re: thank God I found you
« Reply #14 on: Dec 28th, 2003, 5:07pm » |
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Reckon we gotta be more careful whom we tell to eat cake now.............mmmm pasties , er... pastries  LOL!
Wish I could offer more than whats been said already, but, alas..........
Welcome back and sorry ya gotta.
Ramon
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I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
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cakelady
New Board Junior
damn I don't want to be here
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Re: thank God I found you
« Reply #15 on: Dec 28th, 2003, 5:32pm » |
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Hey man... tell everyone you know to eat cake! Keeps me from having to get a real job. Which would take me away from my o2 tank and make me have to explain this shit to a boss.
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Little Deb
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Re: thank God I found you
« Reply #16 on: Dec 28th, 2003, 9:11pm » |
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WELCOME!!!
So excited to have you!!
I'll put in my request now, I LOVE rum cake!!!
And I nominate you for desert for the convention...anyone want to second????
Oh, and I love lemon cake, and chocolate, and cheesecake, and angelfood cake, and banana split cake, and chocolate chip cake, ........
little deb
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Adopt a shelter pet!
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Mr. Happy
CH.com Alumnus
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Re: thank God I found you
« Reply #17 on: Dec 28th, 2003, 9:11pm » |
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on Dec 28th, 2003, 10:46am, cakelady wrote:| which is worse, the pain or the fear? |
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It's always a pleasure to welcome a new virgin.
Loose lips, sinking ships and all that.........
Let them eat Cake.......
RJ
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| « Last Edit: Dec 28th, 2003, 9:12pm by Mr. Happy » |
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Charlie
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Re: thank God I found you
« Reply #18 on: Dec 29th, 2003, 5:07pm » |
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Welcome to the fold Cakelady. Glad you found us; sorry you had to.
It sounds like you have a handle on this horror and I hope you stick around. You'll find a lot of good ideas.
Here are two links: The first helped me shorten the attacks and the second helps explain to others that CH has no relationship to what one thinks of as headache.
http://www.netsync.net/users/charlies/
[url]"http://www.ouch-uk.org/ch/note_colleagues.cfm"
[/url]
Feel free to rant away and let us know how you're doing.
Charlie
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| « Last Edit: Dec 29th, 2003, 5:09pm by Charlie » |
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Killroy 2.0
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Kilroy 2.0 is Here! Kilroy 2.0 is Everywhere!
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Re: thank God I found you
« Reply #19 on: Dec 29th, 2003, 5:15pm » |
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Welcome,Welcome,Welcome,Welcome,Welcome,Welcome,Welcome,Welcome,Welcome, Welcome,Welcome,Welcome,Welcome,Welcome,Welcome
Gena
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Do the walls speak to you? Do you follow the Geek Messiah? DO YOU COMPLY?!
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