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(Message started by: rob_d on Feb 6th, 2004, 1:22pm)

Title: I'm new here
Post by rob_d on Feb 6th, 2004, 1:22pm
Hi everyone- I am a 40 year old man- had CH since i was 16...get them every 3 years or so...theis bout happened 1 week ago...funny how I convince themselves they are gone forever!!

I have tried some medication over the years and found no relief, but 3 days ago went to the Dr and he suggested Stadol nasal spray- what a godsend.

Of course the headaches persist but the pain is almost non-existent...the second best thing to being pain free.

Thanks for listening- nice to be here.

Rob

Title: Re: I'm new here
Post by Margi on Feb 6th, 2004, 1:30pm
Hi Rob and welcome.
Just so you know, we just launched a website for O.U.C.H.  Canada (Organization for Understanding Cluster Headaches).   Feel free to drop in for some "home grown" info.  (No, not THAT kind of home grown!   ::))  We've also just upgraded to the same format of a message board that you see here.

http://www.clusterheadaches.ca

Glad you've found something to relieve your pain.

Title: Re: I'm new here
Post by BlueMeanie on Feb 6th, 2004, 1:40pm
Welcome Rob !!!

Sorry to hear the Beast has returned.

I'm glad Stadol works for you, but it is a narcodic. Stadol just knocks you out. Does not rid a CH. I used that stuff years ago and it sucked. Check on Imitrex and O2. Please read all you can off this site. Many new meds out there that you probably have NOT tried. I hope you find some relief soon. I am sending PF vibes your way in hopes you have a very short cycle this time around.

Title: Re: I'm new here
Post by echo on Feb 6th, 2004, 1:59pm
Glad you found an abortive that works for you.  I have used it from time to time myself.  It is a dangerously addictive drug however.  

Sorry the SOB returned for a visit after a 3 year absence.

Title: Re: I'm new here
Post by amen on Feb 6th, 2004, 6:00pm
Sorry you have to be here :'(  Welcome though.  You will get lots of great information here, and a ton of wonderful support.
Andrea

Title: Re: I'm new here
Post by River_Rat on Feb 6th, 2004, 6:21pm
Welcome aboard Rob, glad you have something that works, stick around, this is a great place to hang out.

NORM

Title: Re: I'm new here
Post by Charlie on Feb 7th, 2004, 12:32am
Welcome aboard and I'm happy you found something that works. Stick around as there are lots of good ideas here.  Here's one that worked for me:

http://www.netsync.net/users/charlies/

Charlie

Title: Re: I'm new here
Post by cootie on Feb 7th, 2004, 12:38am
Hi Rob.......nice meetin ya !!! Hang around and learn alot and have sum fun ! Pam that likes South Park's cute version of Canada

Title: Re: I'm new here
Post by Callico_Kid on Feb 7th, 2004, 12:38am
Welcome!  

Draw up a chair and sit a spell.  You will find a lot of info available as well as a lot of caring people to help you through the tough times with this beast.  Glad the Stadol is working for you, but along with the others I would strongly encourage you to check out some of the other remedies that are now available that don't have the addictive qualities.  O2 is a definite recommend.

Take care.
Jerry

Title: Re: I'm new here
Post by tsayswhy on Feb 7th, 2004, 1:53am
Welcome Rob  ;)

glad you found us. You should read about imitrex injections and o2 works well and ask your dr. about this
and like margi said please look us up over in the canadian site and feel free to post there as well.

wishing you pf...........tari

just around the conner from you feel free to email me!

Title: Re: I'm new here
Post by TxBasslady on Feb 7th, 2004, 2:01am
Welcome to the board, Rob....

Lots of good information here.....and the best support group around.

Hope you stay and let us know how you're doing.

PF vibes,

Jean

Title: Re: I'm new here
Post by rob__d on Feb 7th, 2004, 7:59am
Thanks for the kind advice everyone.

I have a few thoughts re CH and I would be curious if anyone agrees.

One thing I have noticed is that if I get an attack at home, there is nothing I can do but wait it out- sometimes 1/2 hour, sometimes 2 hours. (A few days ago was a first, I had a 45 minuter, went to bed and got another one before I could fall asleep).

However, if I happen to get one when I REALLY don't want one, say at work or in a public place, I can usually fend them off. I don't know how or why, but they seem to attack and then drift away after 10 minutes. That never ever happens when I get one at home.

Another phenomenon is that if I am in the middle of one, an 8 on the kip scale, my memory increases. For example, right now , pain free, I couldnt name 5 kids in my first grade class, but during an attack I could name almost all. The headaches must allow me to concentrate or drudge things out of my subconcious for some reason.

Thanks for letting me ramble.

Title: Re: I'm new here
Post by Margi on Feb 7th, 2004, 11:13am

on 02/07/04 at 07:59:21, rob__d wrote:
Thanks for the kind advice everyone.
However, if I happen to get one when I REALLY don't want one, say at work or in a public place, I can usually fend them off. I don't know how or why, but they seem to attack and then drift away after 10 minutes. That never ever happens when I get one at home.


Hi again, Rob - I'd say that's because of the adrenaline theory.  Most sufferers don't get hit when the adrenaline is surging.  It's when they start to relax that the bombs start dropping.  My husband is the same way.  He is a finishing carpenter by trade, so he's very physical in his work.  He rarely gets hit during the day.  It's when he gets home at night and sits down is when the beast finds him.  I wish we could figure a way to keep you guys pumped up all the time, but then the sleep deprivation would probably kill you.  It's a vicious circle, isn't it?  :(

Also, you say you're getting hit just after falling asleep.  Rob, go to Shoppers Drug Mart and get yourself some generic Gravol or generic Benadryl.  Take two before bed and it will most likely let you get through the night.  It doesn't let you reach REM sleep which is when clusters hit.  Don't take it for more than a few days in a row but do try it, ok?

Hang in there!



Title: Re: I'm new here
Post by cathy on Feb 7th, 2004, 11:23am
Hi Rob Welcome aboard...sorry to read that your getting hit...hope you find some PF time soon....sending you vibes from across the pond...

Cathy  :)

Title: Re: I'm new here
Post by brad267 on Feb 7th, 2004, 12:09pm
Hi Rob,

Welcome aboard, eh.

Brad

Title: Re: I'm new here
Post by Mark C on Feb 7th, 2004, 2:43pm
Welcome to the board Rob,
BTDT with the Stadol, I did not do too well with it, and I usually like narcotics but that stuff made me sick and dizzy, and I still had a HA.

For more conventional meds look here (http://www.clusterheadaches.org/medications.htm) most of which I have tried and most work. Oxygen gives relief without nasty side effects, look here (http://www.headachesupportgroups.com/oxygen/oxygen.htm) for info.

PFDAN's
Mark

Title: Re: I'm new here
Post by Kirk on Feb 7th, 2004, 6:49pm
Welcome to the Maelstrom.
Like Don says "stay stressed, don't ever relax".
Unless you are like me. I never stress.......much.

TTFN [smiley=smartass.gif]

Title: Re: I'm new here
Post by BobG on Feb 8th, 2004, 3:10am

on 02/07/04 at 18:49:52, Kirk wrote:
Like Don says "stay stressed, don't ever relax".
[smiley=smartass.gif]


Don said that?  [smiley=huh.gif]

Title: Re: I'm new here
Post by rob__d on Feb 8th, 2004, 7:53am
Now this is odd...

I am 2 weeks into a cycle but PF for 3 days, but yesterday got one so took Stadol spray and as usual the headache persisited but I felt no pain.

5 hours later I got another one so I took the spray again (I don't like to take the spray so frequently but I will if I feel a doozy is on the way) and for the first time it didn't completely help. Perhaps it turned a 8 kip into a 5, that type of thing.

Woke up last night 4 am with one, but didn't feel alot of pain, just the unmistakable throbbing and convulsing. It's as if the stadol took 8 hours to work.

This stuff is scaring me- going to see the Dr tommorow for immitrex injections or 02.



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