Hello, all.  I just discovered this site last week.

I'm an over-40 male who has been suffering from clusters for six years, the first three of which, I was undiagnosed, and had no clue what was happening.  The last three years I've been keeping a log of each headache, but only recently had my doctor tell me about oxygen therapy. 

When I last visited my doctor (prior to my current cycle, which began 2 weeks ago), he suggested that I try a trip to the emergency room for oxygen when my next cycle began.  I said that would be inpracticle, and suggested having oxygen prescribed.  He admitted he'd never thought of that, but agreed that if the insurance would cover it, he would do it for me.

When my most recent cycle began 2 weeks ago, I left a message with his office, and he prescribed home oxygen.  My insurance will cover 90% of it, but I have to pay the rest (which is still more than I can afford).  Anyhow, they delivered a concentrator last Thursday night, and a standby tank (which I take in my car). 

The oxygen was set at 10LPM, and I tried it for the first time on Thursday night (Friday AM), during three separate headaches which woke me up, three hours apart.  In each and every instance, the oxygen aborted the headache within five minutes.  I could not believe it.  I'd only wished I'd known about this 6 years ago.

The next night I woke up with a full-blown headache and figured that the oxygen would never get rid of that one.  Much to my surprise (and answered prayer), even the full-blown cluster went away in less than 10 minutes.  I had another "lesser" one a few hours later, but that, too, disappeared with the oxygen.

I've had a total of 6 headaches in the 3 days since I got the oxygen, and all were aborted by it. 

I had one concern about the masks, as they say "one time use", but an RN I know from church told me not to worry about it.  I will wipe the interior with alcohol once a day.

When my current cycle ends, I plan to have the oxygen taken back (I don't need it between cycles), and when a new cycle begins, I'll have the doctor re-prescribe it.  I certainly don't want to pay for oxygen for months when I don't get the headaches.  Although, I'd probably get a new mask with each new cycle.

Hope the rest of you find the relief I've recently found.  I wasn't too hopeful about it working, and was very surprised when it did.

It had never occured to me that if something worked, it might actually, someday cease working.  Most troubling to learn that.

Anyhow, I certainly hope not.  After six years of nightmares, the relief of the past five days has a been a literal miracle.

Would increasing the O2 flow rate matter?  My concentrator doesn't seem to go any higher than 10 (I don't know if that's the way it's made, or whether they program them individually per doctor's orders.)

Bassplayer Jim wrote on May 24^th, 2010 at 7:08pm:

   Would you send your ax  back if you weren't using it?  Having the o2 at all times is a nice bit of security.

        Potter

Thanks, all.

About sending the 02 back when the cycle ends -- I'm paying 10%, and even though that's apparently going to be minimal, I barely scrape by as is, so I really can't afford anything which isn't absolutely necessary. 

I just play a generic bass ("New York Pro" -- it's a fender copy) (see the "barely scraping by" bit, above), but it works fine. I've found it's not really the bass, but the player (and the strings -- they help a lot) (Incidentally, I use D'Addario XL nickel wound, super light gauge.  Why rip your fingers apart on suspension bridge cable if you can play on silk?)

While I don't currently play in a band, I play an occasional gig with old friends (I was asked to do a grad party in 3 weeks -- classic rock).  My main thing now, though, is playing on the worship team weekly (at least when the drummer's there) at my church.

And, yes, I plan to wipe down the mask with alcohol daily.  I'm glad the 02 is working, as this cycle is having a much higher degree of frequency than is normal for me.  I've had a headache for each of the past 10 days straight now, without missing a day (and a few of those days with multiples).  I'd normally get a headache on Monday, then maybe two on Tuesday, nothing until Thursday, then another Saturday, three Sunday, etc.  This one is hitting every day.  That's new for me.  Thank the Lord for the 02 (at least when I'm home).

It shows how distracted I am.  Didn't even notice the bass clef in your icon.   

Thanks, Chad.

I do normally get some warning with my cycles.  I get "sensations" on that side of the head a few days before the headaches "proper" begin (if anyone can call Cluster's "proper", that is). 

This particular cycle, I had three or four days of "warning"/"starter" headaches (much milder versions of clusters), which gave me a head's up that an attack was about to begin.  I don't know what the norm is with anyone else.  Naturally, I didn't even know what cluster headaches were until three years into my 6-year experience with them.

When I've told others about them, they'd always say, "Well, I've had bad headaches, too."  And I explain, "uh, uh, not like this."  But they don't understand.  In a way, I'm glad they don't understand.  I wish no one else ever had to deal with them, as I'm sure you all understand, here.

As long as I can get in touch my with MD (and I plan to discuss this with him next opportunity), and he can get the call in to the oxygen people, I'm fine with that.  I went 9 months between my last cycle and this one (that's unusually long for me), and I don't want to pay extra for the concentrator for long periods of time when I'm not using it.  It's really a matter of finances for me.  But honestly, even if the insurance was paying the entire cost, I couldn't justify having them pay for something I didn't need for months at a time.   

Jim,

When others ask how our headaches feel, I just jump on the nearest computer and youtube Cluster Chuck and show them what this pain is like.  I warn them that it is graphic.  After that, they usually understand how bad they are.  It's good to educate I guess so they can pass it on to others with no knowledge of CH.

I play guitar in a worship group......have jammed a little bit with Brew when we've gotten together. Will have to get you to one of our conventions or just get togethers and pick the strings a bit!

Joe

you're not too far from atlanta...

Brew, given my situation, Atlanta might as well be the moon.

djphrenzy, practice makes perfect (unless you're tone deaf, that is). 

On a serious note, set your bassist goals a bit higher -- not necessarily Entwistle (Who and Zep were my models for bass as a kid), but something a bit more ambitious than playing along with Huey Lewis.   

Thanks.  My insurance doesn't differentiate between the concentrator or the tanks as far as what they pay, and I still pay 10% either way.  BTW, I do have a back-up tank, too, which I take with me in the car.  Thus far, I havent had to use it.

Hi and welcome Jim.



Quote:


Joe and Brew (with the clef )   are 2 awesome guitar players.   Please try try try.. to come to Atlanta. It will be the most rewarding 2 or 3 days you ever spent.  We're having one of the best (if not THE best) headache specialists talk, so you will not only have a great time but will learn a LOT too that can help you down the road.

Linda

An E-tank holds 679 liters of compressed O2. At 15 lpm, it will last 45 minutes. At 25 lpm, it will last 27 minutes.