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Transamdoug
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Shout at the devil!
 
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Glad to find you!
« on: May 15th, 2008, 1:54am » |
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Hi all, I'm Doug, a 46yr old white male, married with a 20 yr old son who's on his own and an 8 month old grandson. Been an episodic CH for 3 years now, 1st year just ice and screams, 2nd year had midrin which worked quite well and figured out lots of water. Had last year off but the beast is back this year. Been little over 3 months now, Midrin quit working 2nd episode, and GP diagnosed CH. Fought that a while, thought it was sinusitis or allergy, something with a cure! Ent said no again and had to agree the more I read about it. This is the second incurable disease I've had to face in my life as I am a recovering alcoholic too. Been sober over 4 years now, and as AA groups saved me from that hell it was so great to find this site and see the care and concern you share with each other, brothers and sisters united in pain and success in the fight against this demon, and giving each other hope for better and PF days ahead. This group gives hope to us who had none. I am powerless, not hopeless! I've left my email and IM on so I can better meet you. BTW After crash course on CH now on Topomax, doesn't seem to work, Prozac so I don't give up the fight! And frovatriptomin that kills the beast dead for me for now but real expensive! Just got an O2 concentrator and be trying that and some other methods I've read about out, will let you know what works and doesnt! Sharing in pain and success...Doug
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Sharing in pain and success...Doug
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George_J
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White-Breasted Nuthatch
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Re: Glad to find you!
« Reply #1 on: May 15th, 2008, 2:09am » |
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Welcome, Doug.
You're not alone with this anymore. And powerless?
Well....here's the thing. We never let the beast win. We win. Every time.
Pretty soon the experts here will weigh in, and we'll see what we can do to dissect your own personal monster.
Hang in there. It's something you can live with. You're doing great.
George (episodic forty-some years).
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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barry_sword
CH.com Alumnus
New Board Hall of Famer
Mountain Biking Keeps Me Sane
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Re: Glad to find you!
« Reply #2 on: May 15th, 2008, 7:09am » |
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Hi Doug. sorry you have to be here but you are not alone with your battle with the beast anymore. read all you can to your left and print off the info on the o2 from the left also.
100% o2 at 15 LPM with a non-rebreather mask at the very first sign of an on coming hit. I also take during cycle 480mg Verapamil as a preventive, and that worked very well with my last cycle.
I hope you find what will work for you and congrats on winning your "other" battle. 
Barry 
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QUIT SMOKING SEPT. 03 2005,
http://barrysword.blogspot.com
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Ray
CH.com Alumnus
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Ray and Shade
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Re: Glad to find you!
« Reply #3 on: May 15th, 2008, 7:40am » |
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Dear Doug:
Welcome to the global cluster villiage. I'm sorry you had to find us, but glad you did, if you follow.
Just to clarify what barry_sword said, the oxygen concentrator has been found by most to be ineffective. The concentrators do not provide 100% oxygen. Please try to obtain bottled oxygen with a HIGH FLOW regulator, capable of 15 liters per minute. In addition, you need a NON-REBREATHER mask (It will have a bag that inflates and deflates.)
There are articles both on this site and the OUCH website to provide to the doctor that explain in detail the most effective way to use oxygen to abort cluster headache attacks for most of us.
I'm glad that you've stopped drinking, I've seen what misery that can cause, and wish you continued success being sober.
Wishing you the best,
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
http://www.myspace.com/rayplace
http://www.shadesgarden.com
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RichardN
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Re: Glad to find you!
« Reply #4 on: May 15th, 2008, 12:58pm » |
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Hi Doug
What dosage of Topomax are you on? . . . and how long have you been taking it? I personally have no experience with Topomax (frequently called Dopeymax here . . . because of side effects many experience with it), but often it's started with a transitional drug like Prednizone which is used to control the attacks til the Topomax builds in your system to become effective. Those with experience with this prevent will come back and let you know what their experience has been.
Also, no experience with the frova, but also mentioned often and many use it with success. I'm 61 and have some artery blockage and high cholesterol, so cannot use triptans (like Imitrex). 02 is my only abortive and I can usually kill him in minutes if used early-on in the attack.
The one good thing about CH is . . . if you have a problem with alcohol, there's not a drink in the world worth a Kip 8-10 . . . which is what I will get if I have one real beer or a shot of brandy.
When my wife found this site for me (2/02), I was having 6-8 attacks daily and sometimes 3-5 at night, Kip 5-9s, most 20-45 min and the occasional 1 1/2 hr + horror . . . . was a basket-case . . . afraid of the next one . . . afraid to sleep. I was also a fairly heavy drinker, but didn't associate alcohol with the attacks (had been drinking for years . . . rarely got headaches of any kind). So . . . I'd be at the bar, feel an attack coming, down a couple of Goodies Powders (all I was doing was eating up my stomach lining), try and find a dark corner, rock, pace, moan and groan, pound my head with my fist . . . and then, when he "whooshed away" . . . back to the bar and, "DAMN . . . give me a beer! When I got here and found that, for most of us, alcohol is a major trigger . . . it was pretty easy to give it up (though I do miss it). Many episodics can drink when out of cycle. I'm chronic and alcohol is a guaranteed trigger for me . . . also exhaust fumes, some chemicals/solvents . . . there was a thread recently where a sufferer identified cedar as a major trigger for him.
DO get . . . as soon as possible . . . the correct 02 set-up. Even if insurance won't cover, it's cheap, effective, and NO side effects. It takes a little practice but we're here to help you with it's use. Proper flow-rate and mask is essential.
Keep reading, keep posting . . . the answers/info/caring/sharing you will get here comes from folks who truly know your pain. You'll find out very quickly why we refer to this place as "home" and "family".
Welcome Home,
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Transamdoug
New Board Newbie
Shout at the devil!
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Re: Glad to find you!
« Reply #5 on: May 15th, 2008, 5:28pm » |
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Thanks to all for the good wishes and advice! The concentrator did get rid of a 7 last night but it came back after a while, will have to get the right equipment.
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Sharing in pain and success...Doug
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Transamdoug
New Board Newbie
Shout at the devil!
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Posts: 21
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Re: Glad to find you!
« Reply #6 on: May 15th, 2008, 11:48pm » |
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Hey Richard, I didn't forget the Topomax answer...what was the question? I just didn't have the bottle with me, 25mg once a day been on it 45 days about. Noticed a slight decrease in frequency I guess when I think about it...what was I talkin about? Oh yeah, but it DEFINATELY affects short term memory, now I have CH and CRS!
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Sharing in pain and success...Doug
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Transamdoug
New Board Newbie
Shout at the devil!
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Posts: 21
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Re: Glad to find you!
« Reply #7 on: May 17th, 2008, 1:29am » |
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Gotta thank you all so much, O2 is AWESOME! Been getting hit bad every night lately and 15 minutes of 02 is knockem right out...Beats the hell out of the all night dances I had been doing! Blow that beast away!
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Sharing in pain and success...Doug
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CostaRicaKris
New Board Veteran
Currently training for AFC half Marathon
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Re: Glad to find you!
« Reply #8 on: May 17th, 2008, 10:18am » |
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25 mg of Topomax is a very low dose. I take Topomax and it works for me. I'm also an episodic (8 years but just diagnosed in September) I've used Topomax sucessfully for two cycles. I start at 50mg a day while on Prednisone taper and work up to 150 a day for the remainder of the cycle. Many people take 200 mg.
Topomax does have it's side effects. My memory seemed to get better after a while - or maybe I just forgot that I wasn't remembering things. Soda tastes flat and it does intensify my emotions. One minute I'm yelling at my husband and the next I'm in tears. BUT - the hits aren't as bad. So, I take it. I have hypertension and take atenolol for that, so my neuro didn't want me of Verapamil. That seems to be the most common preventative for CH.
Anyway - Sorry you have to suffer with this, but welcome to the board.
~Kris
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Visit my website: http://www.active.com/donate/amnhealthcare/KristinaMorris to learn more about Girls on the Run, a non-profit prevention program that encourages preteen girls to develop self-respect and healthy lifestyles through running
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