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Topic: Living with this for 13 yrs. and still going. (Read 340 times) |
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alone5min
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Living with this for 13 yrs. and still going.
« on: Mar 5th, 2004, 11:08pm » |
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Hello everyone,
I haven't surfed the internet about CH since the early 1990's and am happy a whole website has been devoted to fellow sufferers. I'm currently in my episode phase for the year and am 3 weeks strong into the attacks. So... no sleep, and constantly on 'lookout' for the next grand event. It seems the researchers are gaining ground on this affliction. I've used the O2 therapy too and like all the other meds, I become resistant. So, just like you, I'm still searching for my answer. My latest 'try-me' is a med called Axert. It aborts them if taken quickly but there's always that attack that catchs you offguard while u sleep. I feel for all the sufferers here. Keep your chin up
(or down during an attack), and keep on keeping on.
Lots of Love
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Callico
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Proud Dad of a US Marine!
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Re: Living with this for 13 yrs. and still going.
« Reply #1 on: Mar 5th, 2004, 11:24pm » |
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Glad you found us. You will find this site to be very helpful both for information and most importantly for the ability to converse with others who know where you are coming from. There has been a lot accomplished since 1990, but at the same time, not nearly enough. Grab an oar and help us row.
Jerry
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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Belle
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Kiss Me You Fool!
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Re: Living with this for 13 yrs. and still going.
« Reply #2 on: Mar 7th, 2004, 3:01pm » |
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Hey there Al. Or wait I guess I shouldn't call ya Al cause it doesn't sound very feminine. Well anyway. Welcome to the group. So glad that you've found something to help you through this cycle. Stick around and do lots of reading and help us help others. That's what we're all here for.
Hoping your days will soon be PF,
Belle
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Take the time to stop and smell the roses!
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Mr.YL
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I love YaBB 1G - SP1!
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Re: Living with this for 13 yrs. and still going.
« Reply #3 on: Mar 7th, 2004, 10:04pm » |
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Sorry to hear your in the boat also,I like you surfed the net years ago for info and found nothing,,,,now look what we got..WOW...their may be hope yet with the new technology...Research...Research...Research.
Wishing you pain free sleep and PFDN ...Mr.YL
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keep livin clean...
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alone5min
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Re: Living with this for 13 yrs. and still going.
« Reply #4 on: Mar 7th, 2004, 10:32pm » |
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Thanks for the posts Calli,Belle,MrYL. Still getting hit 2x a day. You know the time. Right when getting to sleep and just before waking up. All of it equals, NO SLEEP.
Wishing all of u 2 b painfree as can be. I'm hanging in here. Thanks for the welcome!
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TxBasslady
CH.com Alumnus
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Bass fishin' is a h00t It's the catchin' that sux
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Re: Living with this for 13 yrs. and still going.
« Reply #5 on: Mar 8th, 2004, 12:12am » |
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Hi Alone,
Welcome to the board.
You didn't mention what meds you have tried. You might check some of the past posts about Melatonin. It seems to work for quite a few here...and it's not expensive. There are alot of home remedies used by alot of folks here.......read all you can. Some of those just may work for 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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alone5min
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Let's rock n' roll
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Re: Living with this for 13 yrs. and still going.
« Reply #6 on: Mar 9th, 2004, 11:09pm » |
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Thanks, Jean. Tried melatonin. No worky for me. I've settled into a routine with these and since they won't go away for good, I like keeping them where they are. (once a year for a month). No need in waking a sleeping monster when he wakes up on his own. I only take Axert during onset's with a cold wet washcloth, turn fan on high, rock and pace for an hour and it's over. There isn't much I haven't tried except the mushrooms, and brain stimulation, I'm waiting on the verdict.  Thanks for your post and caring.
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Luke63
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For sale: 1 BIG BARKING HEAD Price: Free
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Re: Living with this for 13 yrs. and still going.
« Reply #7 on: Mar 10th, 2004, 3:56pm » |
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Hey...Im on my cycle too..starts mid-feb...usually until end of march. Hang in there ok? Mine...I think....are starting to "peak" so to say. Instead of 1 a nite....its leaning towards 2 a nite. Be strong. Send those brainwaves to all the others..we're here too. And by the way....a real good feeling.....take a ziploc type bag and fill it with about 3 pounds of flour....keep it in the freezer.....feels good to me. Good luck.......Jim
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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thomas
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Re: Living with this for 13 yrs. and still going.
« Reply #8 on: Mar 10th, 2004, 6:12pm » |
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Hey welcom aboard, couldn't help but notice your handle......... Does it by chance have anything to do with "Just 5 minutes, worm Your Honor, him and me alone........"?
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alone5min
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Let's rock n' roll
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Re: Living with this for 13 yrs. and still going.
« Reply #9 on: Mar 13th, 2004, 10:45pm » |
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Thanks for the tip, Jim. I haven't tried flour but have stuck my head in the freezer My cycle is declining. I haven't had an full blown one in 2 days!!! Just bumps in the nite. I have to sit up, clear my onset and go back to sleep. I'm emerging into the clear again. Yippee!!!
Thomas, the handle is just something I stumbled upon a few years back when I didn't get 5 minutes alone. Are you referring to a song, or a quote? Just curious.
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tsayswhy
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Re: Living with this for 13 yrs. and still going.
« Reply #10 on: Mar 14th, 2004, 12:26am » |
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welcome aboard alone5min
I sorry you are getting hit right now with the beast 
tari
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if you are going my way---i will walk with you
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Robert the.......
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I'm gona get that CH Beastie
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Re: Living with this for 13 yrs. and still going.
« Reply #11 on: Mar 14th, 2004, 5:48am » |
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Hello welcome sorry your being hit!
just to say welcome to the boards.
keep posting
Scott
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Melissa
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Re: Living with this for 13 yrs. and still going.
« Reply #12 on: Mar 14th, 2004, 8:11am » |
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Hello alone, if you haven't done so already, please click on this link--> http://www.clusterheadaches.org and click on "cluster help" and then "medications". Also, welcome to the family, and I'm very sorry to hear of your pain. We all understand what you're going through!
Take care!
 mel
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pubgirl
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Re: Living with this for 13 yrs. and still going.
« Reply #13 on: Mar 14th, 2004, 8:22am » |
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Thomas
Crazy.
Toys in the attic, I am crazy.
Truly gone fishing.
They must have taken my marbles away.
Love from Wendy
(alone 5 min, it's Pink Floyd. The Wall. The Trial)
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Renee
CH.com Alumnus
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May we all find some pf time! Is it summer yet?
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Re: Living with this for 13 yrs. and still going.
« Reply #14 on: Mar 14th, 2004, 8:51am » |
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Howdy alone,
OUCH, link on left, has chapters!
There is a Texas Chapter now forming and you're only about 3.5 hours from Dallas. We just had a Texas Meet & Greet two weeks ago where clusterbuddies came from all around and met each other and shared stories, pain, hugs, etc.
Glad your cycle is declining and i'm waiting on a verdict too!
You will find lots of support, understanding and love here and a lil' bit of stomping on the beast!
Let me know if you're interested in the texas chapter!
pf 24/7 to ya and keep posting...oh, and ..
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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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