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        New Message Board Archives >> 2004 Posts >> New to the group
        
(Message started by: RollTide87 on Dec 28^th, 2004, 3:36pm)

Title: New to the group
Post by RollTide87 on Dec 28^th, 2004, 3:36pm

Just wanted to say hello. My name is Scott. I joined up a couple of years ago and looked up a couple of things. Clusters come about every 18 months and last about 16 weeks. Have them once or twice a day. They're back. I find that prednisone at about 40-60 mg. keeps them at bay. Blowing up pretty good right now. I weighed 150 and am now around 165 in just over a month. I am a 39 year old white male. I started getting this things at age 20. Used to get them in the summer, and twice a year. Then it was once a year. Now it is every 18 months, so maybe they are spacing a part. I have another 8 weeks to go at least. The last few bouts seem to start near the time change. Imitrex injections really help. If I'm in a cycle and drink hard liquor, I am in serious trouble, so I learned my lesson there. Living in Alabama now. Take care. Very interested in this Psilocybin study. Roll Tide.

Title: Re: New to the group
Post by nani on Dec 28^th, 2004, 3:38pm

Welcome (back) Scott. Sorry you're having a hard time. Have you tried Oxygen to abort? Are you tapering the Prednisone? I hope you get some relief...Pain Free wishes to you.

Title: Re: New to the group
Post by RollTide87 on Dec 28^th, 2004, 3:42pm

When I taper down to 20 mg. the clusters come in full force and seem to be much worse. So I'm at 30 today. I am having MRI's and CAT scans done this week. Don't know why. The neurologist said since it's been 10 years, it's probably a good idea to have 'em done. Guess they need to pay for the machine.

Title: Re: New to the group
Post by nani on Dec 28^th, 2004, 3:43pm

No...I think it's a good idea to make sure nothing else is going on. I've had a burst brain aneurysm and wish they would have caught it sooner.

Title: Re: New to the group
Post by eddie on Dec 28^th, 2004, 3:49pm

welcome scott, hope you find some relief

Title: Re: New to the group
Post by Kirk on Dec 28^th, 2004, 3:52pm

Have you discussed O2 with yer doc yet?

Title: Re: New to the group
Post by RollTide87 on Dec 28^th, 2004, 3:54pm

Tried oxygen about 5 years ago. Provided some relief but nothing like the imitrex.

Title: Re: New to the group
Post by Ruth on Dec 28^th, 2004, 7:32pm

Welcome, just wanted to say hi.

Ruth

Title: Re: New to the group
Post by RollTide87 on Dec 28^th, 2004, 11:44pm

Thanks. Not many women get clusters, do they? How old are you and how long have you had them? Scott

Title: Re: New to the group
Post by BlueMeanie on Dec 28^th, 2004, 11:54pm

Welcome Scott,

Did you use the high flow regulator when you tried 02 ? I asked because when I first started with 02 I never knew about high flow and non-rebreather mask. It does work better that way. And yes, booze is a killer in cycle.

PF vibes to you. Hope your cycle is short this time.

Title: Re: New to the group
Post by Rock_Lobster on Dec 29^th, 2004, 8:49am

Hiya Roll.

Modes of treatment...
Short term prevents... ie Pred
Long term prevents... ie Verapamil, Topamax, Lithium, Psilocybin
Aborts... ie Imitrex, Zomig, o2

A good number of the fresh faces must get up to speed on the long term prevents. That is where the whole quality-of-life thing comes into play.

Hit the meds section. Best of luck.

Title: Re: New to the group
Post by cschick on Dec 29^th, 2004, 8:57am

on 12/28/04 at 23:44:00, RollTide87 wrote:

Thanks. Not many women get clusters, do they? How old are you and how long have you had them? Scott

You'll find quite a few women 'round here. We really wish you guys could keep them all for yourselves, but no such luck! [smiley=laugh.gif] I use verapamil as preventative and O2 to abort. MUST use non-rebreather mask and 10-15 LPM. Takes about 10-15 minutes to kick the beasts' ass completely but once it's gone it GONE! Been my experience anyway. Best of luck to you, welcome and the MRI and CAT scans are a good idea especially if you haven't had one in so long!

Title: Re: New to the group
Post by hilbily on Dec 29^th, 2004, 11:13am

Welcome, Scott
Sorry you're here, but welcome aboard. Find a good nero who's familiar with clusters, and work with him. Took me 3 docs first time just to find out why my head wanted to explode! Might want to give the O2 a second try, maybe it'll work this time. It's cheaper and not as intrusive as the Rx stuff.
Goooooo DAWGS!......Woof woof woof! Hilbily

http://img.photobucket.com/albums/v629/gahilbily/bamafishinhole.jpg

Title: Re: New to the group
Post by RollTide87 on Dec 29^th, 2004, 12:39pm

Now, would that be a Mississippi State or UGA woof woof? Ya'll just love to pick on the Tide, don't ya?

Title: Re: New to the group
Post by Leesa on Dec 29^th, 2004, 2:25pm

HI Scott and ROOOOLLLLL TIIIIDDDEEEEEEEE ;;D
Now on to business..........well I cant add anymore then the others. Just READ READ READ!! Welcome to the BEST care anywhere!! Let us know if we can help ya out. The support round here is KICK ASS! Keep us posted Bro!!!
Leesa ;;D

Title: Re: New to the group
Post by hilbily on Dec 29^th, 2004, 2:58pm

on 12/29/04 at 12:39:26, RollTide87 wrote:

Now, would that be a Mississippi State or UGA woof woof?

That would be from the real Bulldogs!!!

http://img.photobucket.com/albums/v629/gahilbily/dawgsbanner.jpg

Have a great day!

Title: Re: New to the group
Post by vig on Dec 29^th, 2004, 4:27pm

Welcome to Crazy Town... ;;D

Title: Re: New to the group
Post by Redd715 on Dec 29^th, 2004, 8:02pm

Quote:

Goooooo DAWGS!......Woof woof woof! Hilbily

Wouldn't be the SIU Salukis would it? ;)

Greeting Roll Tide. Another female to add to the list of females popping in here.

Title: Re: New to the group
Post by unsolved1 on Dec 29^th, 2004, 8:32pm

Welcome to the board Scott. Don't listen to the others, women don't have clusters !!

;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D

let the flaming begin

http://www.clustertown.com/unsolved.gif

Title: Re: New to the group
Post by Redd715 on Dec 29^th, 2004, 8:39pm

I won't flame you dear.....

but the investigation into your dissapearance may end up being

http://www.clustertown.com/unsolved.gif

J/K [smiley=laugh.gif]

Title: Re: New to the group
Post by Charlie on Dec 29^th, 2004, 9:06pm

WB Scott:

Sorry you're gettin hit by this horror. Look around. You never know; maybe there's something new to you. This is my thing:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

I hope this technique is helpful and I wish you the best of luck

Charlie

Title: Re: New to the group
Post by RollTide87 on Dec 29^th, 2004, 11:35pm

Thanks dude. I will give that I try.

Title: Re: New to the group
Post by Ree on Dec 29^th, 2004, 11:45pm

Welcome back... You will find some old and new aquaintances... the site has really grown thanks to DJ... but geesh... watch it with the "women don't get CH"... I think that is a popular misconception... you could get killed for saying that in here............Im just a migrainer ... Hubby gets the big boys... about every 2 and 1/2 years... what do I know... Welcome anyway... be well Ree

Title: Re: New to the group
Post by TxBasslady on Dec 30^th, 2004, 12:42am

Welcome back....to Clusterville

Good luck! .....and do not listen to the men! ::)

They know not of what they speak [smiley=huh.gif]

PF vibes,

Jean

Title: Re: New to the group
Post by CC2004 on Dec 30^th, 2004, 9:46pm

on 12/28/04 at 23:44:00, RollTide87 wrote:

Thanks. Not many women get clusters, do they? How old are you and how long have you had them? Scott

44 years old - 28 years
They say it used to be something like 6 to 1, now its 3 to 1 men to women... should be some clue there in changing lifestyles
but too often just when you think you've found a useful clue in a pattern they just go [smiley=finger.gif] nah!
I cant drink either [smiley=bigcry.gif]

8 weeks into cycle, began water & magnesium 2 weeks ago when I found this site, am getting up to 4 days without attacks now, something's working

good luck for PFDANs to you and us all
take care & be strong
CC