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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Another Newbie

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Another Newbie (Read 830 times)

henry69a

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Another Newbie
Dec 16^th, 2011 at 10:12am

Well, I've finally been diagnosed with Cluster Headaches, after enduring years of useless treatments for "Sinisitis", "Neuralgia", "Migraine" etc, and being left for hours in A&E after doctors continually write "Headache" on my notes and wonder why paracetamol isn't working. I've been put on daily doses of Verapamil and have a couple of Sumitriptan Nasal sprays when the warning pains come.
I appear to be one of the lucky ones whos clusters come once a year(Around oct-dec time) for a period of about 6-8 weeks. I'm 23, and male by the way, and clusters started when I was around 19-20, and I've noticed with each cluster the pain is progressively worse. Which is worrying.

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Another Newbie Reply #1 - Dec 16^th, 2011 at 10:30am Where ya located? Potter
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Guiseppi

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San Diego to Florida 05-16-2011

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Re: Another Newbie
Reply #2 - Dec 16^th, 2011 at 10:50am

Welcome to the board Henry. Yeah, I found my headaches got worse as I left my late teens, and really hit their stride in my mid 20's.

Take a look at this link:

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

Since discovering oxygen, my use of triptans has almost stopped. I can abort my attacks in aboout 6-8 minutes just by huffing oxygen. Been a real game changer for many.

What is your dosing on verapamil? We find many doctors use too low of a dosing, we have members going as high as 960 a day to get relief.

Go the the medications section of this board, and check out the post "123 pain free days and I think I know why"

It's a daily vitamin/mineral supplement that's providing relief for some on the board. All over the counter stuff, worth a look see.

Glad you found us, as Potter mentioned, let us know what part of the world you're from as a lot of the info you need is location specific

Joe

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

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Bob Johnson

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"Only the educated are
free." -Epictetus

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Kennett Square, PA (USA)
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Re: Another Newbie
Reply #3 - Dec 16^th, 2011 at 11:34am

Clearly, you are blessed at this point in you life!. Unfortunately, there is no way to predict changes in your experience.

So, while I take your "worry" comment as a conversational aside now, if you find yourself becoming preoccupied/anxious about what may develop (and this pattern can become a source of painful paralysis for some), take a look at this article and tuck it away.

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

Bob Johnson

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chTrotter81 CH.com Newbie Offline I Love CH.com! Posts: 9	Re: Another Newbie Reply #4 - Dec 17^th, 2011 at 2:30am Your story sounds a lot like mine! Started at 19ish and have gotten worse and more worse, until now where I use the words excruciating and suicidal to describe the pain. Although I wouldn't kill myself, those thoughts do come. But, now I dread sleeping and running out of pills. I'm a big worry wart as well.
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henry69a

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Re: Another Newbie
Reply #5 - Dec 17^th, 2011 at 7:37am

Potter - Epsom, Surrey, UK

Joe - Thanks I'll have a look at that, if I can get over the counter relief(at least a little). I can't remember offhand about the Verapamil but it's the lowest possible doseage - Had my first ECG a week ago. Same with the Sumitriptan it's 10mg spray.

Bob - That's really useful! I have found that if I think about CH a lot, I'll get a shadow. Weird.

Trotter - Yeah you feel the same as me, it sounds! Though I've only had a couple of night attacks, mine are usually around 10-11pm(at my desk at work). You never know, they might come up with something before we get old enough for the attacks to be totally insane.

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Guiseppi

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San Diego to Florida 05-16-2011

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SAN DIEGO, CALIFORNIA USA
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Re: Another Newbie
Reply #6 - Dec 17^th, 2011 at 9:51am

Stick around here and read like crazy, get yourslf educated as to ALL your options for treatment. Knowledge is power when it comes to beasty.

Also visit Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

They have a lot of information specific to obtaining treatments and navigating the medical systems on your side of the pond.

Joe

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

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