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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Living with this for 13 yrs. and still going.
        
(Message started by: alone5min on Mar 5^th, 2004, 11:08pm)

Title: Living with this for 13 yrs. and still going.
Post by alone5min on Mar 5^th, 2004, 11:08pm

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

Title: Re: Living with this for 13 yrs. and still going.
Post by Callico_Kid on Mar 5^th, 2004, 11:24pm

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

Title: Re: Living with this for 13 yrs. and still going.
Post by Belle on Mar 7^th, 2004, 3:01pm

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
::)

Title: Re: Living with this for 13 yrs. and still going.
Post by Mr.YL on Mar 7^th, 2004, 10:04pm

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

Title: Re: Living with this for 13 yrs. and still going.
Post by alone5min on Mar 7^th, 2004, 10:32pm

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!

Title: Re: Living with this for 13 yrs. and still going.
Post by TxBasslady on Mar 8^th, 2004, 12:12am

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

Title: Re: Living with this for 13 yrs. and still going.
Post by alone5min on Mar 9^th, 2004, 11:09pm

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. ;;D Thanks for your post and caring.

Title: Re: Living with this for 13 yrs. and still going.
Post by ljd1963 on Mar 10^th, 2004, 3:56pm

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

Title: Re: Living with this for 13 yrs. and still going.
Post by thomas on Mar 10^th, 2004, 6:12pm

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........"?

Title: Re: Living with this for 13 yrs. and still going.
Post by alone5min on Mar 13^th, 2004, 10:45pm

Thanks for the tip, Jim. I haven't tried flour but have stuck my head in the freezer ;;D 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.

Title: Re: Living with this for 13 yrs. and still going.
Post by tsayswhy on Mar 14^th, 2004, 12:26am

welcome aboard alone5min

I sorry you are getting hit right now with the beast :'(

tari

Title: Re: Living with this for 13 yrs. and still going.
Post by Robert the....... on Mar 14^th, 2004, 5:48am

Hello welcome sorry your being hit!

just to say welcome to the boards.

keep posting

Scott

Title: Re: Living with this for 13 yrs. and still going.
Post by Melissa on Mar 14^th, 2004, 8:11am

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

Title: Re: Living with this for 13 yrs. and still going.
Post by pubgirl on Mar 14^th, 2004, 8:22am

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)

Title: Re: Living with this for 13 yrs. and still going.
Post by Renee on Mar 14^th, 2004, 8:51am

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 ..

JOIN OUCH!!!!