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Topic: Another sufferer (Read 325 times) |
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ArmyWife
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I just want to say hi to everybody on here. My headaches started back at the beginning of 2000, and I was finally able to convince an "old school" neurosurgeon/military doctor that I had clusters (he had NEVER seen them in females before). Steriod therapy and Indomethacin did the trick that time, and I was pain free until just this past week... So now I shall have to do the dance again until my doctor's appt. 
This website has really taken off in the last few years, and I am so glad to see all the new information, but am so disappointed to see all the new sufferers. At least we have each other to lean on and share with!
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jonny
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You had to "CONVINCE" your Neuro?
Hmmmmmmm!!!!!
CAT!!!!
This website has been crankin for years, where ya been?
.............................................jonny
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| « Last Edit: Feb 7th, 2003, 11:53pm by jonny » |
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JDH
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We will get by, We will survive!
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Re: Another sufferer
« Reply #2 on: Feb 7th, 2003, 11:47pm » |
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Sorry to hear your getting hit armywife. Hope your Dr appt isn't too far off. Hell go to the ER if it get 's too bad.
Do you think there's an increase in sufferers or is it because there's more info out there (like this great website) and people are being made aware of what's wrong with them and Dr's are FINALLY starting to take notice.
When this shit started with me 18 years ago the neuro said "You're having cluster headaches and we just don't know much abou them" and sent me home to fight the beast bare handed...it was terrifying!
I agree with you there's tons of new info. available and I really think we're headed in the right direction.
pfdan's to you
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
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brain_cramps
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Re: Another sufferer
« Reply #3 on: Feb 8th, 2003, 12:03am » |
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on Feb 7th, 2003, 11:47pm, JDH wrote:| When this shit started with me 18 years ago the neuro said "You're having cluster headaches and we just don't know much abou them" and sent me home to fight the beast bare handed...it was terrifying! |
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WOW!  My words exactly!
ArmyWife:
Sorry to hear the beastard is back, but glad you found this place (again).
PFDAN,
Grant
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Mark C
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Onward through the fog.
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Re: Another sufferer
« Reply #4 on: Feb 8th, 2003, 12:31am » |
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Welcome ArmyWife,
Sorry you need us, glad you are here. There is much information on this site and the OUCH site. I will attach a couple of good links to get you started. Print some of this stuff and take it to your next Dr. visit. Knowledge is power. Most of us "old-timers" have suffered through mis-diagnosis for years. Places like this site are going to change things for CH sufferers. I hope you are a good example of someone not having to suffer for years before getting good treatment, good luck.
http://www.clusterheadaches.org/library/general/overview.htm
http://www.clusterheadaches.org/library/medications/index.htm
on Feb 7th, 2003, 11:46pm, jonny wrote:
This website has been crankin for years, where ya been?
.............................................jonny
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Good question brother...
I have wondered about this alot myself. I have had CH since I was about 15 or 16. Suffered for decades. I have been on-line for at least the last seven years.....how come I just found this place late last year. I don't know......Google and I found it. I have went back and read most of the archives....thats a bunch of Clusterheads experience. It should be in a book. Amazing stuff.......
PFDAN's
Mark
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Roxy
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Re: Another sufferer
« Reply #5 on: Feb 8th, 2003, 2:30am » |
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Hi Army Wife and welcome,
Sorry you are dealing with the beast right now...hope it gets better. Really glad you found us though, you'll find tons of information here, also some pretty fine people.
PFDAN,
Tracey
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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Charlie
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Re: Another sufferer
« Reply #6 on: Feb 8th, 2003, 6:38am » |
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Welcome Army Wife:
You are right, there is a ton of info and ideas here and we want you to stick around. We'll do our best to help and we can learn from you as well. Here is a link from Simon's UK page that you can print. It's the best thing we have to describe this horror and to explain just how this thing affects one's life. Take a look.
http://www.ouch-uk.org/ch/note_colleagues.cfm
The best of luck and let us know how you're doing.
Charlie
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catlind
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Taz taught me the cluster dance
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Re: Another sufferer
« Reply #7 on: Feb 8th, 2003, 10:19am » |
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Armywife,
If you have to 'convince' your doctor (neuro or otherwise) of anything, then you need a new doctor.
Request a referral to Walter Reed and don't waste your time with the local military system, you will get no where.
Walter Reed has a FANTASTIC neurology dept and a great headache clinic as well and will work with you at a distance to help you get on proper treatment regiment.
I just saw Dr Reichers there last week and he was fabulous. Best neuro experience I have ever had.
Cat
(Airforcewife)
btw, tell us about yourself, where are you stationed, what's your name, what are your symptoms etc.
Indomethicin usually is effective for CPH but not for Clusters. Welcome aboard, grab an oar and start rowin.
I found this site first hit after I was told I might have cluster headaches. I just didn't know what I had because of incompetent neuro's.
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| « Last Edit: Feb 8th, 2003, 10:25am by catlind » |
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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jonny
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on Feb 8th, 2003, 10:19am, catlind wrote:
I found this site first hit after I was told I might have cluster headaches.
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LMMFAO ;D
I got my first puter and spent the first 14 days printing out naked pictures....LMMFYBO!!!!!!
Once I got bored with that I typed in cluster headaches and BAMMMMM I was home at CH.COM.
Many times I have recieved an eviction notice but jonny dont play that game, dug in my heels and refused to leave. Ever see a wild horse try and drag a mule anywhere?.....LOL ;D
.................................jonny (HONK!)
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ArmyWife
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Thanks for the warm welcome everybody! I've lurked on this site on and off over the past couple of years and it has grown into a vast wealth of info for me. I think with more and more people getting a computer and getting on the web, it has created the need for more exchange of info on CH's, as well as other things. Yeah, the neuro doctor I had at Ft. Lewis was from the school of thought that only males get CH, but once the tests were run and the symptoms were all down on paper, he had no other diagnosis for me.
About myself: My name is Lisa, I'm 40yrs young, married for 17 years and have a son, a daughter and a cat. My husband is in the Army, and we have lived in CO, AK, WA and currently live in OH, but we are due to move to Germany within the next 9 months. I was diagnosed in Feb. 2000, after seeing several doctors and finally getting one to refer me to neurology. My symptoms started out as atrocious pain (8-10 on the Kip Scale) above my right eye that would wake me up out of a dead sleep at 1:43 a.m. each and every night, and my eyelid drooped, got bloodshot, teared up and it felt sometimes like a stabbing, searing pain right in my eye. This time around tho, the pain isn't as severe (has so far hit a 7 on the scale), and wakes me up between 2:00 a.m. and 5:30 a.m. but the rest of the symptoms are there.
Because of where we are stationed right now (we live in Avon Lake, OH), we are totally dependent on Tricare Prime Remore for our health care (and they STILL have kinks to work out of that one!!!). We are assigned a Primary Care Manager and we have to go thru her for everything, but in order to see her, we have to make an appt. Her and I have talked in the past about my CH's and she is familiar with them, and I know once I do get in to see her, I'll have no problem getting the treatment and support from her. She's an awesome doctor to have and I will miss her dearly when we move. 
Enough of my ramblings...I'd love to know more about all of you. ;D Lisa
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jonny
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Hi Lisa,
jonny here, 27 years chronic and for the last 12 or more years I have been taking 480 mgs of Verapamil and 600 mgs of Lithium EVERYDAY......Man, you would think they could get it down to a pill a month....Bastards....LOL ;D
Location: Boston (well, 10 miles south) and heading off to Iraq next tuesday to kick Sadam in his towle head ass (not really, I like to dream)
Lisa, did you know that you can get here from Germany (access of weasles along with France) and there will always be someone here?
Well, if you been lurking for years you know my story.
.................................jonny 
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catlind
CH.com Alumnus
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Taz taught me the cluster dance
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Re: Another sufferer
« Reply #11 on: Feb 8th, 2003, 7:02pm » |
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Lisa I'm sure you already know all this but I'm going to tell you anyway just incase you don't know. First you are EFMP qualified. 2nd, get the referral to Walter Reed, go to their website and call and make the appt yourself if need be, then have your doc write a letter saying your hubby has to accompany you , and they will cut orders for you so your trip is paid for.
I STRONGLY recommend doing that before goign to Germany. There are some awesome dr's in Germany, but if you don't have an existing documented diagnosis and a medication treatment regiment, you could find life difficult.
I can't say enough about Walter Reed, it's worth the drive. We are at Ft. Drum, and it was worth every stressful minute of teh ride with 3 kids.
Like I said, call WRAMC yourself from the webpage if your primary care is not a a military provider.
Tryandgetcare will let you go, and you'll find you'll get your O2 spcrip much faster andeasier as well afer you've been there.
From one military wife to another, you deserve that option and have the right to get it.
Cat
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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ArmyWife
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jonny: Wish you much luck over there. Just watch out for the sand fleas...
Cat: Forgive me, but maybe you misunderstood. I have documentation in my med records that I have CH's. The neuro back at Ft. Lewis offered me EFMP, but I turned it down because it wouldn't have done me any good. My husband has been a recruiter since Aug 2000, and the recruiting command at Ft. Knox doesn't exactly look at EFMP stuff when they place a recruiter in a needed slot. The recruiting command goes by its needs only, period. If the doc here refers me to anybody, it would be within their health care system, and not a military one. WRMC is unfortunately out of the question for me, even w/o a referral, due to the duties and responsibilities I have with our kids and hubby with his job. I'm confident that my PCM here can help me out. Thanks for the info tho!
Lisa
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