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RollTide87
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New to the group
« on: Dec 28th, 2004, 3:36pm »
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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.
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nani
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Re: New to the group
« Reply #1 on: Dec 28th, 2004, 3:38pm »
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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.
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Re: New to the group
« Reply #2 on: Dec 28th, 2004, 3:42pm »
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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.
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nani
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Re: New to the group
« Reply #3 on: Dec 28th, 2004, 3:43pm »
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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.
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Re: New to the group
« Reply #4 on: Dec 28th, 2004, 3:49pm »
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welcome scott, hope you find some relief
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Re: New to the group
« Reply #5 on: Dec 28th, 2004, 3:52pm »
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Have you discussed O2 with yer doc yet?
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RollTide87
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Re: New to the group
« Reply #6 on: Dec 28th, 2004, 3:54pm »
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Tried oxygen about 5 years ago. Provided some relief but nothing like the imitrex.
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Ruth
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Re: New to the group
« Reply #7 on: Dec 28th, 2004, 7:32pm »
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Welcome, just wanted to say hi.
 
Ruth
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RollTide87
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Re: New to the group
« Reply #8 on: Dec 28th, 2004, 11:44pm »
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Thanks. Not many women get clusters, do they? How old are you and  how long have you had them? Scott
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Re: New to the group
« Reply #9 on: Dec 28th, 2004, 11:54pm »
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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.
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Re: New to the group
« Reply #10 on: Dec 29th, 2004, 8:49am »
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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.
 
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Re: New to the group
« Reply #11 on: Dec 29th, 2004, 8:57am »
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on Dec 28th, 2004, 11:44pm, 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!   laugh  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!  
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Re: New to the group
« Reply #12 on: Dec 29th, 2004, 11:13am »
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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
 
       
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RollTide87
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Re: New to the group
« Reply #13 on: Dec 29th, 2004, 12:39pm »
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Now, would that be a Mississippi State or UGA woof woof? Ya'll just love to pick on the Tide, don't ya?
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Re: New to the group
« Reply #14 on: Dec 29th, 2004, 2:25pm »
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HI Scott and ROOOOLLLLL TIIIIDDDEEEEEEEE  Grin
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  Grin
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Re: New to the group
« Reply #15 on: Dec 29th, 2004, 2:58pm »
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on Dec 29th, 2004, 12:39pm, RollTide87 wrote:
Now, would that be a Mississippi State or UGA woof woof?

 
That would be from the real Bulldogs!!!
 

 
Have a great day!
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Re: New to the group
« Reply #16 on: Dec 29th, 2004, 4:27pm »
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Welcome to Crazy Town... Grin
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Re: New to the group
« Reply #17 on: Dec 29th, 2004, 8:02pm »
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Quote:
Goooooo DAWGS!......Woof woof woof!     Hilbily  

 
Wouldn't be the SIU Salukis would it? Wink
 
Greeting Roll Tide.  Another female to add to the list of females popping in here.
 
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Re: New to the group
« Reply #18 on: Dec 29th, 2004, 8:32pm »
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Welcome to the board Scott. Don't listen to the others, women don't have clusters !!
 
 Grin Grin Grin Grin Grin Grin Grin Grin Grin Grin Grin
 
let the flaming begin
 
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Re: New to the group
« Reply #19 on: Dec 29th, 2004, 8:39pm »
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I won't flame you dear.....
 
but the investigation into your dissapearance may end up being
 

 
 
J/K laugh
 
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Re: New to the group
« Reply #20 on: Dec 29th, 2004, 9:06pm »
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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  
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RollTide87
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Re: New to the group
« Reply #21 on: Dec 29th, 2004, 11:35pm »
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Thanks dude. I will give that I try.
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Re: New to the group
« Reply #22 on: Dec 29th, 2004, 11:45pm »
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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
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Re: New to the group
« Reply #23 on: Dec 30th, 2004, 12:42am »
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Welcome back....to Clusterville
 
Good luck!   .....and do not listen to the men!   Roll Eyes
 
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PF vibes,
 
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Re: New to the group
« Reply #24 on: Dec 30th, 2004, 9:46pm »
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on Dec 28th, 2004, 11:44pm, 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  finger nah!
I cant drink either  bigcry
 
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
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