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DRussells

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Newbie in Chi-town
Jan 7^th, 2009 at 2:12pm

hello all. I've had CH for 5 yrs and only diagnosed last yr. i am so happy to find this board! tough to find good resources and support. THANKS!

my family seems to think I blow these headaches out of proportion e.g. they are on par with a regular sinus headache. had those b4 and they are NOTHING compared to this.

i am 36 yrs old. live in chicago burbs. been in a cluster for the last 5 days. couple of clusters usually occur after winter solstice then there is a month break. then i go in and out of cluster periods until the summer solstice. very strange that it is so strongly linked to these times of yr. seems like exercise and alcohol are hit or miss in bringing a CH on.

dr has perscribed propranolol (beta blocker) as preventative and maxalt as acute treatment. after diagnosis (near end of last season) the propranolol seemed to work magic. this yr, it has not worked so well in preventing CHs.

i've been woke up the last few nights at exactly 12:05 and scrambled to get maxalt in my mouth. 2 nights ago only had a 15 min shadow. last night had trouble getting meds in time, so had a mild 2 hr ch.

anyone ever used these rx's before with success? i've read alot about treatments on this site, but haven't found anyone on the same program. seems like O2 is worth a try!

going to call the dr this pm and see if there is anything else he can suggest.

thnx in advance for any advice and support.

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Bob Johnson

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Re: Newbie in Chi-town
Reply #1 - Jan 7^th, 2009 at 2:16pm

This list will give you some basis for discussing options when you call your doc.
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Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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

or

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Bob Johnson

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DennisM1045

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One wave at a time!

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Re: Newbie in Chi-town
Reply #2 - Jan 7^th, 2009 at 2:21pm

Welcome to the board and the family!

Bob beat me to it Wink

Print out and take that info to your Dr and then work out a proper treatment plan. Living on triptans is necessary for some but there are lots of other approaches out there.

Keep reading and keep learning. Remember that you are your own best advocate.

Good luck and let us know how it goes...

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Guiseppi

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Re: Newbie in Chi-town
Reply #3 - Jan 7^th, 2009 at 2:21pm

I haven't used either of those so can't answer those questions. If you're regularly getting the night time terrors, try taking melatonin 30 minutes before you go to bed. It's an over the counter supplement at health/vitamin stores. start at 3-6 mg a night, work up until you get relief. Might take a couple of days. Many find they can avoid the night time hits that way.

Oxygen is a miracle worker for me, but it has to be used right. Your lungs must get only pure 02, no outside air, no exhaled air. This is best accomplished using a non re breather mask at a high flow rate, at least 15 LPM. I can abort an attack in less then 8 minutes using the 02. Certainly worth a try as it's cheap and has no side efefcts.

Even if you ARE from Chicago...(Padre fan here!)....welcome to the board. So glad you found us, hoping we can help you.

Joe

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

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DRussells CH.com Newbie Offline I Love CH.com! Posts: 5	Re: Newbie in Chi-town Reply #4 - Jan 7^th, 2009 at 2:42pm bob, dennis & guiseppi - thanks for your quick replies. i was able to schedule an appt with the doc this pm. i am going to print out the links and take them with - you guys are fantastic. guiseppi - i think u and i are OK since I am an AL MLB fan - your Padre's are OK by me. GO White Sox thanks again
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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: Newbie in Chi-town Reply #5 - Jan 7^th, 2009 at 3:18pm DRussells wrote on Jan 7^th, 2009 at 2:42pm: guiseppi - i think u and i are OK since I am an AL MLB fan - your Padre's are OK by me. GO White Sox Hmmmm... Family trouble here... I'm a major Red Sox fan -Dennis-
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DRussells CH.com Newbie Offline I Love CH.com! Posts: 5	Re: Newbie in Chi-town Reply #6 - Jan 7^th, 2009 at 3:28pm Dennis - I am sure we can get along fine. i root against the yanks if that makes any difference... btw - maiden voyage to Fenway this past summer. BoSox vs Angles. That is the best ball park I've ever been to. so much better than Wrigley. off to the dr's now...armed with info...will let you know the outcome. thnx again!
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DRussells

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Re: Newbie in Chi-town
Reply #7 - Jan 8^th, 2009 at 2:55pm

Dr. visit was OK. since I had an rx for Inderol (preventative) that I just filled, they suggested that I try upping the dose from 20 mg to 40mg. concern here is low heart rate. also got a new rx for maxalt mlt (dissolves under tounge for faster ingestion in blood stream).

suggestions made sense to me, but there was some resistance to the O2. next course of action with these dr's would be to try topamax.

i am going to give everything up to the topamax a try and if it doesn't work, find a new dr that has more experience w/CH's

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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Newbie in Chi-town Reply #8 - Jan 8^th, 2009 at 3:32pm Why are doctors so against prescribing 02???? Just wondering... Welcome to the family, D. You should come and see the fancy stadium we built for our Cardinals.... It is very nice.... Now.... If they could just play baseball............ Jeannie
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DRussells CH.com Newbie Offline I Love CH.com! Posts: 5	Re: Newbie in Chi-town Reply #9 - Jan 10^th, 2009 at 12:07am Not sure. It is a family Doc. I asked and they have not seem many clusterheads. looking into a specailist in Chicago this weekend. Starting Topomax this week.
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