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Cluster Headache Help and Support >> Getting to Know Ya >> New to this HOME but not to the BEAST
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Message started by Darkmessiah on Aug 15th, 2010 at 6:22am

Title: New to this HOME but not to the BEAST
Post by Darkmessiah on Aug 15th, 2010 at 6:22am
Hi All

I have been dealing with the BEASTS for some time now, I cant even tell you when they started, I went to a surgen last year and did all the tests and eventualy he told me that it's CH and there in nothing he can do to stop them, only a minute amount of the world population get them and of that % its mainly men.. He gave me some drugs including Imigran (sumatriptan 6mg).
Well needless to say i thought there and then i'm F*&KED and WTF is the point of living like that....
Thanks to my Girlfriend I'm still here to type this today...
After researching these BEASTS for over a year, on and off, I have come accross this forum, and you people here are the first people i have come accross that deal with the same as me, every1 i have spoken to that dont know what its like tell me to get over it cos its a normal HEADACHE or MIGRANE (I must admit i wanted to HEADACHE [smiley=bash.gif] some of those IDIOTS) I was begining to think that that % of the world population was smaller than i have been told, the while surfing the web doing more research this morning this little site popped up out the big blue and i had to come check it out. I sat reading some of the posts here and then I just had to join and become part of this Family that can understand what is happening when i say "O SH!T HERE IT COMES AGAIN!!!!!!"  >:(

Well beck to a bit of info....
I have had these for so long i cant remember but Last year and this year they are sooooo bad, I understand why they called SUICIDE HEADACHES...... Last night was the worst this year and boy if i had a gun at the time i think i would have used it, I know it sound weak but you guys know 1st hand what we all go through......

Now i have founf this forum i'll be on here trying to help others and seaking that reconcilliation and advice from you all........

I need some advice on how these BEASTS are affected by flying as I'm going to Canada from South Africa soon so any help or info will be gr8.....  :P

Well thats all folks
I will be here often and this is my introduction to this hopefully GR8 FAMILY.....  ;)

Chat soon.....

Title: Re: New to this HOME but not to the BEAST
Post by Kate in Oz on Aug 15th, 2010 at 7:15am
Hello,

Welcome!  Glad you found this site, there is simply a wealth of information available.  I've not had any personal experience with flying and CH but aware that there is a thread about this going at the moment.

Other than that, I think it would be fair to say we understand exactly the sort of pain you are dealing with... but don't believe the doctor who says there is nothing you can do!!  If you've been reading you will see that there are many viable ways of dealing with this beasty.  The most successful way of aborting a hit I have found so far is oxygen - at a high flow rate 15 lpm - I was knocking them off in under 10 mins during my last cycle.

Lots of people here use energy drinks such as Red Bull - with taurine and caffeine - and find this greatly reduces the intensity of a hit if slammed down fast at the first sign.

BTW women get CH too  ;)

Back to your doctor - if he's any good he should have prescribed a preventative med eg verapamil or some such - this may reduce the intensity and duration of your cycle.  (I tend to lay off the prevents now that I'm on the 02 - but everyone is different).

I hope some of this has helped.  No doubt more people will get on soon and offer more advice.  This is a wonderful place - feel free to ask questions, vent, ask for support!  We do understand and are here to help!

Keeping you in my thoughts,

Kate

Title: Re: New to this HOME but not to the BEAST
Post by Kevin_M on Aug 15th, 2010 at 7:26am
Jumpin' over fences
Swingin' on a gate,
That Aussie lass Kate
Didn't hesitate.

:)


From the getgo, she said a mouthful.  Glad to lend a hand from the inside out.   

Title: Re: New to this HOME but not to the BEAST
Post by Darkmessiah on Aug 15th, 2010 at 7:37am
Thanks Kate

Im just sooooo glad to have come accross this site as it's become a world of info and i think it should be known to the worlds doc's as they could all learn a thing or 2 from us and this site......

Title: Re: New to this HOME but not to the BEAST
Post by Kate in Oz on Aug 15th, 2010 at 7:42am
YES YES YES!  I went undiagnosed for over 10 years with this friggin condition.  To think of all the unnecessary pain I had to endure because the doctors didn't have a clue.  I found this site in 2005 and it changed my life and the way that I deal with my CH.  Life is livable again  :)

Title: Re: New to this HOME but not to the BEAST
Post by Kate in Oz on Aug 15th, 2010 at 7:46am

Kevin_M wrote on Aug 15th, 2010 at 7:26am:
Jumpin' over fences
Swingin' on a gate,
That Aussie lass Kate
Didn't hesitate.

:)


From the getgo, she said a mouthful.  Glad to lend a hand from the inside out.   



;) Just passing it on...   I remember when I first came here, everyone was soooo helpful!  Finally now I feel like I'm in a position to help others - and that's a wonderful thing!!!

Title: Re: New to this HOME but not to the BEAST
Post by Darkmessiah on Aug 15th, 2010 at 8:00am
Well Kate

I'm dame sure the info you have given me so far will help...
Who would have ever thought RED BULL of all things could help... WOW gotta try that next hit if i can.....  :D

Title: Re: New to this HOME but not to the BEAST
Post by wimsey1 on Aug 15th, 2010 at 8:27am
Flying can be a trigger for many of us, but there are some for whom it is no problem. Our mantra: everyone is different; and BE PREPARED. I know you are not new to the Beast but maybe new to the effective abortives. Please do not skip past what Kate said about O2. Read the link on the left. It is the best abortive for so, so many of us. Not available when flying, though. For that, you may need something else, like imitrex or even a migranol nasal spray. Lot's are possible. BTW-I don't think many of us have found caffeine/taurine works as an abortive all by itself except for chasing away shadows. When combined with O2, however...it has worked wonders for me. Look for at least 80mgs of caffeine and 1000mgs taurine in any drink. Blessings! lance

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