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musician56

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Happy to have found all of you!
Aug 2^nd, 2010 at 4:08am

Spent the last two days learning about CH. Been misdiagnosed as migraines. Seeing my doctor in two weeks and will educate him and beg for O2. Started CHs about five years ago...cycle lasts about five weeks, usually one headache a day, ended up in ER once. Remission period usually 14-15 months. Alcohol is a definite trigger. Started pounding water (WWW) yesterday and hope to find relief. Bought Red Bull for tonight...I'm already shadowing about 2 hours earlier than usual. Also bought melatonin but will get doctor permission first since I'm on propanolol for high blood pressure. Thanks so much for this website and reading the posts in this forum has brightened my disposition and given me hope.

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Kevin_M

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withered branches grow
green again.

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Re: Happy to have found all of you!
Reply #1 - Aug 2^nd, 2010 at 6:47am

You've read and picked up a few things already that may help span the two weeks until your doctor visit. Let us know how it's going and I hope he's familiar with CH enough to prescribe you something like oxygen, referring you to a neuro is a longer wait.

Even an air conditioner vent may help in the meantime, or an ice pack.

Welcome

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wimsey1

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Re: Happy to have found all of you!
Reply #2 - Aug 2^nd, 2010 at 7:11am

Welcome, and while it is way too bad you need to be here, it's good you have your way to us. When you're pushing for O2, make sure you push for a non-rebreather mask and for a high flow valve. Unless the doc is experienced in ch's, they usually go for a low flow chronic respiratory rate (3-6, or 8lpm) when we need upwards of 15-25lpm. You probably know this from your reading, but a few have come back with scrips that won't do the trick. Let us know how you fare. Blessings! lance

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Kate in Oz CH.com Hall of Famer Offline Posts: 633 Australia Gender:	Re: Happy to have found all of you! Reply #3 - Aug 2^nd, 2010 at 7:29am Welcome! Glad you found us, sorry you had to. Looks like you've got a great attitude - the best way to deal with Ch is to learn all you can and educate your doctor if you need to. Agree that 02 should definately be on your list of things to ask (DEMAND) from your doctor! Good luck, let us know how you get on. Kate
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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: Happy to have found all of you! Reply #4 - Aug 2^nd, 2010 at 9:47am Knowledge is definitely your best ally. Read like a madman and make sure your doc understands you have a good grasp of your condition, and would like to help him help you. Good luck getting the 02! Joe
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shaggyparasol

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Re: Happy to have found all of you!
Reply #5 - Aug 2^nd, 2010 at 12:13pm

Hi Musician, welcome to our club of nuts and crazy zoo animals! Cheesy

Anywho, call me a medical industry cynic but...... I would have a backup plan for oxygen if that is what you want to use. If you are getting hammered right now, I would read up on the welders oxygen and acquiring the mask and regulator online. All sounds simpler than what many go through here with their doctors.

Bet you could have it up and running by the end of this week. Wink

The established medical world has its' usefulness, our condition isn't one of them. (oops, was that my outside voice?? where's my filter today?? Tongue

)

--Shaggy

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bejeeber

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Re: Happy to have found all of you!
Reply #6 - Aug 2^nd, 2010 at 3:24pm

Has anyone mentioned O2 yet? Cheesy

I heartily second Shaggy's rebel notions of going around the medical establishment and getting the relief you need ASAP instead of waiting and waiting around.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Happy to have found all of you! Reply #7 - Aug 2^nd, 2010 at 4:56pm Welcome to CH.com. I'm a guitarist. You may want to print out the link below about O2, to help make your Doctor understand. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Don
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musician56

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Re: Happy to have found all of you!
Reply #8 - Aug 2^nd, 2010 at 5:40pm

Thank you to all of you who have responded and given so much support already. Yeah, an hour after putting up my first post, the devil returned with a vengeance and I did the dance. Took my imitrex, drank a Red Bull. After 20 minutes of agony, decided to start physical activity which seems to bring the headache to an end after another 15 minutes or so. It's the extra oxygen from the exercise that must be helping, but who the heck wants to exercise when it's sleep time?! I've been drinking tons of water, but not seeing any relief from that. Mahalo nui kakou (big thanks to all) from Hawai'i!

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bejeeber

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Re: Happy to have found all of you!
Reply #9 - Aug 2^nd, 2010 at 6:32pm

So you're taking imitrex pills?

Just asking because we se a LOT of Chers being prescribed pill form even though it is generally ineffcetive. The injectible form on the other hand kicks in strong and quick.

While you're waiting for the O2, you might also try putting your nose up to a blasting car or house air conditioning vent and breathing the very cold air deeply for 10 - 15 min. or so.

That'll abort hits for me during the first week or so of an episode, and I've seen others report some success with it. Do this along with a Red Bull right at the onset and my fingers are crossed it could help abort some of your Kilauea sized hits.

Count me in as another member of the (large?) CH/guitarist community. Cool

Dallas Deny too.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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musician56

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Re: Happy to have found all of you!
Reply #10 - Aug 3^rd, 2010 at 12:18am

Thanks, Bejeeber! I've been reading/learning more and more that the pills are indeed ineffective and I was thinking that too, since they are effective only part of the time. I will definitely tell my doc that I want injectables. Oh, BTW, I am not a guitarist...piano, conductor. Thank God I have never had an attack while performing!

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