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Misty

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Jun 22^nd, 2009 at 8:40pm

I'm so happy I found this place. I have been suffering for the past 3-4 years, undiagonsed. Current cycle started shortly after a typical migrane, and took an Imitrix (sp) to abort. Imitrix put me in the hospital with rapid pulse (200+).

Symptoms:

Nightly attacks - 90 minutes after falling asleep awaken with blinding pain over/radiating from left eye.
Daily attacks - becoming more frequent, 3/week around 2pm. 10 minutes warning, if lucky, but no way to prevent (i just have enough time to get home)
Airplanes - 30 minutes after take off.

About me:
Female
33 years old

Nothing I take works. Cry

I have an appointment tomorrow at the Headache Center at the Cleveland Clinic and hope to have some definitive answers then.

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AussieBrian

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head!

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Cairns, Qld, Australia
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Re: New to the board
Reply #1 - Jun 22^nd, 2009 at 8:45pm

Misty wrote on Jun 22^nd, 2009 at 8:40pm:

I have been suffering for the past 3-4 years, undiagonsed.....I have an appointment tomorrow at the Headache Center at the Cleveland Clinic and hope to have some definitive answers then.

Now we're talking! A correct diagnosis is so important because other headache types can mimic CH so you could end up taking our horrible poisons while another, perhaps serious, problem is going untreated.

Regardless, let us know how you get on tomorrow and we'll help you any way we can.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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Charlotte CH.com Alumnus Offline Posts: 2385 Patterson,California Gender:	Re: New to the board Reply #2 - Jun 22^nd, 2009 at 10:11pm Good luck, tomorrow. Do you rock or pace? Charlotte
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Guiseppi

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Re: New to the board
Reply #3 - Jun 23^rd, 2009 at 12:32am

First and foremost....don't send the Aussie any beer...it's only a matter of time before he asks! Wink

He's right though, a correct diagnosis is critical. With hundreds of headache types, meds that are effective for some are useless and even harmful for other headache types. If you're not already doing so, keep a detailed journal of your headaches, frequency, duration, pain levels, potential triggers etc. These are invaluable in diagnosing the headache types. Wishing you luck with the appointment. headaches...any type...SUCK!

Joe

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

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lionsound CH.com Alumnus Offline breathe Posts: 2079 x1\|\|USA\|usa\|522\|64\|ME,Maine Gender:	Re: New to the board Reply #4 - Jun 23^rd, 2009 at 9:10pm How did your appointment go?
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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: New to the board Reply #5 - Jun 23^rd, 2009 at 10:35pm Hi Misty....how was your appointment? Have you taken the Cluster Quiz? Small steps.......often lead to possitive results
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Misty

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Re: New to the board
Reply #6 - Jun 23^rd, 2009 at 10:48pm

Thanks for the comments!

I was lucky...and got a headache while I was there. Well, maybe not lucky, but it helped with the diagnosis. Cluster headaches.

Doc prescribed:
Prednisone tapered for 2 weeks.
Verapamil - 240mg 1/2 tab for week 1, then whole tabs
Topamax - working up to 75mg
Melatonin - before bed. 1 tab to start, up to 3 until working
Oxygen - 10l for 20 min at onset
Zomig - spray at onset. (Thay are leary about this one due to congestion, if not working they will prescribe inj imitrex).

He also wants me to cut out caffineine.

I saw the "migraine" fellow Dr. Whyte, followed by Dr. Stillman. Both were two of the nicest doc I've ever dealt with.

Charlotte: rocker, hot shower-taker, and I tent to "tap" my left temple to assist the explosion that feels bound to happen.

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Iddy

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Re: New to the board
Reply #7 - Jun 23^rd, 2009 at 11:02pm

Hi Misty.......sounds like you are well armed to battle the beast!

Nothing is better than having MD's that are understanding and compassionate to their patients.

Have you the ability to try oxygen as your main abortive?

It works wonders for many of us.

Check out the o2 info tab on the left.

Effective without the side effects of medications.

Wishing you all the best

Iddy

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Walk in Peace

"If you can, help others, if you cannot do that, at least do not harm them." Dalai Lama

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: New to the board Reply #8 - Jun 23^rd, 2009 at 11:04pm Quote: He also wants me to cut out caffineine. Just the opposite is true for most when aborting a cluster headache attack.
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Misty CH.com Newbie Offline I Love CH.com! Posts: 3	Re: New to the board Reply #9 - Jun 23^rd, 2009 at 11:15pm Brew wrote on Jun 23^rd, 2009 at 11:04pm: Just the opposite is true for most when aborting a cluster headache attack. That's what I thought. He said it was optional/suggested. He is a fellow for one more week; the specialist didn't mention it at all.
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BarbaraD

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Hugs to ya

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Douglasville, TX
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Re: New to the board
Reply #10 - Jun 24^th, 2009 at 7:42am

The O2 flow rate is too LOW -- most of us recommend at LEAST 15 liters per minute (25 is better) with a NON-rebreather mask (make sure you have the RIGHT mask - this is really important or you're wasting O2). And get on it at the FIRST sign of a hit. (You might talk to Pete or Chuck about it for some more info, but READ the O2 info on the left - then talk to your doc some more. He might not be aware of the latest findings about O2.)

You need MORE melatonin that one tab (12-18mg before bed works better). Graduate up to what works for you.

If you take the Topamax at night you probably won't experience the side effects that some people have. I've always taken it that way and don't have the side effects. (I've taken it since 99 at - sometimes - very large doses and have not had any side effects but I take the whole dose at night)

I really don't understand the caffeine thing. For most of us - we grab coffee or an energy drink right away. It's a vaso constrictor (like Imitrex) so ....

Hope this is a short cycle for you.

Hugs BD Kiss

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What don't kill ya, Makes ya stronger!

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Guiseppi

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Re: New to the board
Reply #11 - Jun 24^th, 2009 at 1:39pm

Wow! Sounds like some pretty squared away doctoring. I'm with Barbara though, the only part I took exception to was the flow rate on the oxygen. There are some who get relief at flow rates that low. I use a demand valve, others use a flow valve at 25 LPM. The trick is to get ONLY pure 02 into your lungs. NO outside air, NO exhaled air. If your breathing allows you to accomplish that at 10 LPM, it just might work for you. Make sure you are using a NON RE BREATHER MASK. This keeps you from taking in the air you exhaled.

Hoping this new regimen gives you relief, and congrats on finding knowledgeable docs, worth their weight in gold! Wink

Joe

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

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Charlie CH.com Alumnus Offline Happy to be here Posts: 18971 Jamestown, NY Gender:	Re: New to the board Reply #12 - Jun 25^th, 2009 at 12:37pm Very happy for your correct diagnosis. What an assortment of drugs and therapy...By the way, the more caffeine I imbibed the fewer hits. Good luck Misty. Charlie
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