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. :)

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   

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

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

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

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

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. ;)

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?? :P)

--Shaggy

Has anyone mentioned O2 yet?  :D

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.

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.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Don

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! :)

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.  8-) Dallas Deny too.  :)

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!