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britt

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Westlake Village, CA
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Hi....
Feb 7^th, 2009 at 12:06pm

Hi, my name is Brittany, I'm 28 and I am new to all of this. My doctor just diagnosed me with cluster headaches (Which was a surprise because I thought it was a little alien who would get mad and kick me in the back of the eye at the same time everyday). I'm bummed to meet you all under these circumstances but am hopeful that through this site I will learn to deal with these things.

My doctor prescribed me treximet. When they first started I was given Vicodin and Davrocet and they didn't do ANYTHING to touch the pain. Up until the Treximet I preferred to push on the pain to make it go away.

Some of you have asked for symptoms....It's on the left side always above my left temple and eye. I have a droopy eye and a stuffy nose and a teary eye. My husband tells me I look hungover (however a hangover would be more welcome than these stupid headaches). A few days before the alien gets really mad it feels like someone hit me over the eye with a baseball bat...sort of tender and bruised (with no actual bruise)...then the alien comes about 24 hours later. I've been ok for the last couple of days but whenever I get that stabbing pain over my eye, I get very scared......The days I feel good I'm very optimistic. I love the good days and I cherish all of them because I'm not sure when that little beast plans on coming around again!

I am deathly afraid of prednisone......I'm going to see my doctor next week and the first thing I'm asking for is oxygen!

It's nice to meet you all!

Have a great day!

Sincerely,

Brittany

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« Last Edit: Feb 7^th, 2009 at 12:07pm by britt »

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Bob Johnson

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Re: Hi....
Reply #1 - Feb 7^th, 2009 at 1:30pm

IF the Treximet is working for you then good. But it's a formulation which is marketed for migraine and it's active component, imitrex, is, this pill form generally less useful for cluster. Tends to be too slow acting for most folks and so I'd suggest you print out the followng and discuss options with your doc.
--------
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
================

Twice you mention fear. To the degree that you find yourself anticipating an attack (and cluster isn't going away for many years), the quality of life is compromised by chronic fear. We can't afford to live always watching for something to sneak up on us. Please take a look at this approach to coping:

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It takes some practice but delivers freedom.

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Bob Johnson

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Guiseppi

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Re: Hi....
Reply #2 - Feb 7^th, 2009 at 4:56pm

Welcome to the board. A little alien kicking you in the back of your eye. Grin

I really like that description.

Bob's given you your first reading assignment. We warn people that sitting in front of your doc and saying fix me can be a recipe for a lot of pain. It's incumbent on you to educate yourself, and assist your doctor in planning your regimen.

Read the 02 link on the left as using it correctly is critical to it being effective. Welcome to the board, sorry you had to find us but damned glad you did!

Joe

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

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Batch

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Re: Hi....
Reply #3 - Feb 8^th, 2009 at 12:48am

Hey Brittany,

Here's a good sample Rx for oxygen therapy to print it out and take along when you go to see your doc/neurologist. You'll be in great shape if he writes the Rx as written below:

"Oxygen therapy with a non-rebreather mask as an abortive for the pain of acute cluster headaches. Administer at the onset of attacks at a flow rate of 12 to 15 liters/minute for up to 20 minutes per hour up to 12 times a day. Refills as needed for one year."

The wording in the above Rx is very important and it's also in accordance with the MEDICARE Handbook.

If your doc/neurologist balks at the 12 to 15 liter/minute flow rate and wants to specify a lower flow rate... tell him that's the flow rate specified to treat acute cluster headache attacks in the National Guideline Clearing House at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Standards of Care under the GUIDELINE TITLE:

EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias..

If he still balks, hand him a copy of the following web page at:

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

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If he still balks, go with the flow.

Once you have an Rx for oxygen therapy at any flow rate, there are a lot more options available to abort your cluster headache attacks even faster. Check your PM InBox.

Take care,

V/R, Batch

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ClusterChuck

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Re: Hi....
Reply #4 - Feb 8^th, 2009 at 2:05am

Hi Brittany!

Glad you found us, but sorry you HAD to find us.

You have been given some good advice, so far.

You mentioned Treximet. That drug REALLY torques my jaw! I am firmly convinced that it was designed JUST to take up the slack, now that the patent has run out on Imitrex, and can be produced by generic manufacturers. All they did, was take the formula for Imitrex, meddled with it a bit, and added some crap, and jacked the price up, and put it on the market.

I have not seen any proof that it is any better than Imitrex, which can now be bought cheaper, through generic means.

BUT, Imitrex or Treximet pills are NOT preventatives! They are abortives, and rather poor ones at that. If you NEED Imitrex, to abort, use the injectable style, as it is much faster into the system to abort the attack.

The best, cheapest, safest, and most effective abortive is pure oxygen, and it looks like you are already on top of that.

Good luck, and keep us informed!

Chuck

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CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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Ellick CH.com Veteran Offline ET found here. Posts: 200 x1\|Aylesbury\|UK Gender:	Re: Hi.... Reply #5 - Feb 8^th, 2009 at 5:09am Hi Brittany, Coming on here should hopefully help you get you get a little chain to wrap the alien up in a corner. It is difficult but you can get to train it a bit, get it to go and lie down in it's box sometimes. Read everything on here and then start out to find the answers for you. Good luck and best wishes, Ellick.
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britt

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Westlake Village, CA
Gender: female

Re: Hi....
Reply #6 - Feb 9^th, 2009 at 5:05pm

Thank you all so much for the advice! I'm very thankful to have found this place. There is so much information to digest and I know I have a lot to learn but I am truly comforted knowing that I can do something about it. As selfis as it sounds, I'm really thankful I am not alone because I'm learning really fast that people just don't understand clusters.

I have a quick question....What exactly is a shadow? I did a search but didn't really find an explanation of what they are. Is it that subtle pain to remind you that the little alien is still hanging around? Before it started I felt like I had a bruise over my eye. It kept getting progressively worse until BAM! the real pain hit. Then it was like a roller coaster of the worst and most memorable pain for 10 days then the pain started slowly decreasing. Since Friday I've had subtle pains in the same area but not to the same "please shoot me in the foot" degree.

As for the Treximet, I haven't used it for the "please shoot me so something else hurts" pain yet (my local pharmacies don't carry it in stock). By the time I had the prescription I was only having those subtle pains. It seems to ward those off.

Thank you again for all your support and advice!

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Hi.... Reply #7 - Feb 9^th, 2009 at 8:59pm People have slightly different definitions of their shadows. Mine are dull headaches but I can feel the beast claws just starting to dig in behind my eye. Not a tension headache, not a hang over headache, a cluster headache that's trying to take root but can't quite get traction!!! You'll hear several different versions from others! Joe
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Batch

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Re: Hi....
Reply #8 - Feb 9^th, 2009 at 9:08pm

Brittany,

There are several opinions on exactly what constitutes a shadow. Using Bob Kipple's definition available at the left and reading between the lines, shadows are essentially the pain you feel between Kip-1 and Kip-5.

Some folks claim shadows are where they have some of the symptoms of cluster headaches without the pain and that may be true for them as we all perceive pain differently.

Having said that, if you use familiar landmarks to calibrate your pain scale with others like the pain level that wakes most of us from sleep is between Kip-4 and Kip-5 just as the pain level where your eye starts to water and your nose run falls between Kip-6 and Kip-7 you're describing a pain level with which most of us can clearly identify.

This isn't an exacting definition and I'm sure many will have other opinions on the matter, but for the purpose of relating the level of pain you feel to others in terms they understand, it works for most of us.

The sensation of bruising or pain around your eye, face, or scalp when you touch it is usually associated with cutaneous allodynia, one of the lesser known symptoms of cluster headaches. Allodynia is more prevalent during cluster headaches at pain levels at or above Kip-7 but it an occur at almost any pain level as well as before or after the actual attack.

The reduction in pain with each attack you're now experiencing may be a sign your present cycle is ending. We all hope this is the case.

Take care,

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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ski2k

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Re: Hi....
Reply #9 - Feb 9^th, 2009 at 9:08pm

I describe shadows as the slightly painful "warning signs" that a cluster headache is on it's way (little alien hanging out so you know he's there). Sometimes it keeps progressing rapidly to become a full blown headache (alien starts kicking, clawing, and shooting the back of your eye with his uranium pue38 explosive space modulator), sometimes it just lingers there and pisses you off!

Hope that helps!
Adam

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Chad CH.com Hall of Famer Offline Posts: 738 Emmaus, PA Gender:	Re: Hi.... Reply #10 - Feb 10^th, 2009 at 9:34am Welcome! I call a shadow headache a "tingler". It's there to remind me i'm still in cycle and some shadows develop into a full blow cluster. Just read a bunch on this site. It will give you tons of advice and comfort. Wishing you PF days! Chad
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