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Cluster Headache Help and Support >> Cluster Headache Specific >> Been years since CH and they're back!
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Message started by coneclare on Feb 8th, 2009 at 12:29pm

Title: Been years since CH and they're back!
Post by coneclare on Feb 8th, 2009 at 12:29pm
Hi,

I'm new to the board. I started getting CH again last week and they are getting worse each day. I'm getting a couple attacks a day with the worst ones at night after 1 am and pretty much keeping me up for 3 hours easy. Reading the posts on here on how people react during the attacks was like looking into a mirror. Last night was the worst one yet. Total pain for 3 hours. All the pacing, pressing the temple, trying to rip my eye out (lol) didn't phase it. Finally the leaky nose stopped, and the pain started fading with it. It's amazing when you thank god for just a dull throbbing pain instead of the hand grenades going off behind your eye.
I went to Dr today and he prescribed tylenol #3. He said to use an oxygen mask. Like I'll be able to stop working and go sit down for 10 to 30 minutes with a mask on DUH! i mentioned abortive meds and he looked at me like a wanted an abortion, I'm a guy. Sometimes I think most Dr's are clueless. I'm not getting much sleep at night. Right now i'm pain free and dread nighttime coming. Only good thing is my cluster cycles have lasted 2 to 3 weeks so I'm almost halfway there. yay!  :'(
I'm glad I found this site. The stories on the front page really hit home.

CC

Title: Re: Been years since CH and they're back!
Post by ski2k on Feb 8th, 2009 at 12:59pm
For starters.... Welcome!!!!!!!!!!!

Next... forget the tylenol 3.  They are a VERY common trigger, and may actually make things worse. Not EVERYone has the same triggers, but that one's pretty common.  Not to mention the pain is too intense, and they take too long to work for them to really make a difference. (I speak from personal experience on that... except I was on tylenol #4.)

The O2 mask is a good call, but you need the right one, and the right flow rate of O2.  Check out the "Oxygen info" link on the left (in yellow).  It can give you a good idea of what to talk about with your doc.

And yes... most docs are clueless.  It's up to YOU to make sure you're getting the best treatment.  If he won't listen to you, and work WITH you, than consider finding a better doc!

Best of luck to ya!!
Adam

Title: Re: Been years since CH and they're back!
Post by Ray on Feb 8th, 2009 at 1:11pm
What Adam said above was golden advice.  I might also add that many people have had a CH episode aborted by an energy drink containing caffene and taurene.  The energy drink must be consumed quickly and at the first sign of the headache to be most effective.

Ray

Title: Re: Been years since CH and they're back!
Post by Guiseppi on Feb 9th, 2009 at 6:28pm
Welcome to the board. You suffer from a rare ailment. It's to your benefit to learn everything you can about it, then form a partnership with your doctor to tackle it!

Read the links you see Bob Johnson post on various threads, they are the most current treatment options. And please consider oxygen! Read the link on the left, Oxygen Info. I can abort an attack in as little as 6 minutes. The E-tanks fit in those "soccer mom" lawn chair bags and are easy to tote around. It's almost miraculous how fast I can chase the beast away.

Welcome to the board, damned glad you found us!

Joe

Title: Re: Been years since CH and they're back!
Post by slhaas on Feb 9th, 2009 at 7:33pm
Welcome, and I'm happy your cycles are so short, so you wont be in pain much longer.  I don't know if tylenol 3 will do much of anything to help you.  You might suggest your doctor do a little research on cluster headaches or refer you to a neurologist that is more aware.

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