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not another new guy! (Read 787 times)
Timothy
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not another new guy!
Jun 1st, 2013 at 8:06am
 
Greetings folks! 

I posted in another thread and received a few wonderful PMs from folks... very inviting community Smiley  I wish none of us HAD to be here if you know what I mean.  I figured I should intro myself properly!

38 year old dude who has suffered CH since his early/mid 20's... rather text book case really.  First cycle hit and I was floored, but carried on.  Suffered several years, going to Docs who gave me the gambit of stupidity until one fine day in a flat dusty middle eastern country a young SF Medic asked me if I had ever heard of cluster headaches?  Nope.  He had me suck down some glorious O2 and holy bejeebus!  He referred me to a 'real doc' who confirmed CH and started treatments with Indocin and Imetrex.  Those two things helped a bit.

I've been to see Neurologists at Landstuhl Army Hospital in Germany for MRIs and other assorted brain 'scanning' related stuff.  CH is confirmed as nothing untoward was found.

Tried to get O2 tanks at various points in my career with limited success until several years ago a very smart Doc had mercy on my soul and gave me two! 

I should take this time to mention my wife who has been with me through this and other trying times.  She is my rock and I lean on her for so much; I don't think I can ever express my gratitude to her for everything she has dealt with and provided for me.  I am blessed to have found her.

That being said, I don't have access to her at the moment and the CH has reared it ugly head again.  I put a brave face on in front of my lads for a bit, but the intensity and frequency has picked up with the attacks, so that brave face has slipped.  I'm at the point where depression and despair have entered the equation because of the pain and my inability to function for my guys at times.  Oh I know, these in time will pass, but in the moment, these emotions flood over me.

So, here I am... on the boards sharing my experiences.  I am relatively well versed in CH from smart docs and reading at places like this, so not looking for the how to (unless its a way to cure Smiley) maybe just... I don't know venting?

CH Bio:
*started around 15 years ago
*cycles begin around end of May, beginning of June and last through (for the last one) September
*3-5 major hits with low grade "Hi i'm still here" jabs throughout the day
*currently prescribed 25mg Indocin(Indomethacin) as a prophylactic.  Stopped taking them as they really don't work anymore anyway, even if I double dose.
*100mg Sumatriptan but trying to avoid as much as possible as yes, I get rebounds that hammer hard.
*have been on Fioricet before which did absolutely nothing for me
*primary abortive is of course Oxygen at 15lpm... that's all the higher the valve goes otherwise i'd have it dialed even further open  Tongue
*2 house rabbits, a dog and a great wife.  All of which help a great deal when I'm in the throes of fighting the Beast.  All of which are currently inaccessible Embarrassed
*I am a smoker (insert obligatory "you need to quit" statement here... I know Tongue  When I retire at the end of this year!)
*Alcohol in any form will crank a CH up in a matter of minutes.  Looks like no celebratory beers when I go home in a few weeks  Undecided

But that's me in a nutshell. 

Really just saying "Hi."

Regards,
Timothy

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Guiseppi
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San Diego to Florida 05-16-2011


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Re: not another new guy!
Reply #1 - Jun 1st, 2013 at 8:58am
 
Howdy Tim, your story is way too familiar!!! The tears of improper diagnosis, the joy in discovering oxygen and even your supporter!( My wife found the original streaming CH board for me many years ago and saved my sanity)

You asked for a cure.......well we're not there YET, BUT!!!

Follow this link to the medications section of this board and read the post 

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


It might be the "cure" you're looking for.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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