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.

That's outstanding news. Oxygen has proven such an effective abort for so many people, we still love hearing new success stories.

That being said....the oxygen concentrators take a few minutes to "warm up" and start pumping out the higher concentration of 02. And even then are limited as to how much 02 they can put out at once. I say that because many find the 02 at lower outputs will stop working to abort their headaches. Crossing my fingers and praying the 02 from the concentrator continues its magic for you. There are people on this board who use flow rates as low as 6 LPM and it works great.

If the concentrator evert stops being effective, and I do hope that never happens, do NOT give up on oxygen. Us the oxygen from a tank, at a flow rate of at least 15 LPM, using the non re breather mask.

So glad to hear you found a way to kick the beast back. ;)

Joe

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.)

I'm with you, if it works, don't mess with it! But yeah, one of the beasts more annoying traits is meds that have worked for years will stop working. That's why on or off cycle, you always wanna keep your nose on the board here and see what's new and exciting. That way if your regimen ever breaks down, you'll have some back up ideas.

Your current flow rate, if it is aborting your attacks, will probably continue to work fine. The above was just a warning in case it stops working well, don't abandon 02 without giving a higher flow rate a shot.

Having something to stop the attack sure beats having to ride out a 90 minute attack!!

Joe

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

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.

   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

Potter's right - you may want to purchase a tank and keep it full, along with a regulator and one of your disposable masks.

What kind of bass do you play?

And don't worry about wiping the inside of the mask with alcohol - if it gets a little grody, just use a damp cloth. Any little critters you might deposit there won't last long in the light of day.

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).

Well, I have a soft spot for bass players (being one myself). Keep on thumpin' and layin' down the groove, brother.

And honestly, you don't have to wipe down the mask with alcohol every day. Unless you're OCD, in which case wiping down the mask will satisfy a subconscious need for cleanliness and fastidiousness. If that's the case, wipe away. Better not to drive yourself nuts. ;)

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

It's always nice to see a bass player on here.  I try to play when I have time.

Do what others said, keep that tank on stand by because you never know when the next cycle is coming.  I guess every supply company works differently.  I have yet to use my tank in the basement, but it's there on "stand-by".

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.   :)

For those in your life you feel need a better explanation than you can offer, print out a few copies of the following and keep one with you at all times to give away:

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

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.

Thanks, guys.  Much appreciated.

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

Guiseppi wrote on May 25^th, 2010 at 6:01pm:

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

That would be a bit difficult, as I live on the east coast (Pennsylvania).   :o   Would be great, though. 

I also only have a small practice amp.  When I play at church, I use the church's 100w (which is sufficient for worship), and when I play secular, my one friend lets me borrow his 600w Genz Benz (which is probably worth more than my car, and definitely out of my financial range).   :o

you're not too far from atlanta...

Welcome from a fellow Bassist (well, sort of... I have one that I thump on... Schecter Stiletto Elite-4... Awesome bang-for-the-buck bass!)  I'm not very good though, I mostly just play along with Huey Lewis songs.  lol

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.   ;)

Hey realize the o2 concentrator might be expensive, but what if your doc prescribed the normal o2 tanks like everyone here has. Our insurance (Cigna) covers at 100%. We have 6-8 E tanks on hand at all times. Might be better than what you have now and also less expensive. We keep them year round, great security blanket.

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.

Jim would the 10% on the tank be less expensive than the 10% on the concentrator? just a thought.

Hi and welcome Jim.




Quote:

Re: Hello. Newbie to board. Reply #14 - Yesterday at 5:01pm      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

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

Heart, I really don't know.  I haven't been billed yet, so I'll have to see.  The trouble with the tanks would be how frequently I'm getting headaches this cycle (I've had 25 in 22 days).  I don't know how long the tanks would last with 10 to 20 minutes per headache.

Linda, Travel is really out of the question.  Between physical problems and finances, it's a luxury I cannot afford.  Wish you all the best, though, and hope you'll have a fun and productive time.   :)

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.

Brew wrote on May 27^th, 2010 at 9:45am:

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.

I don't know what they have mine set at, but my doctor prescribed 10lpm, so that would last a bit longer.  So, I'd probably get 4 (possibly 5) headaches out a single tank.  I'd have used up 2 tanks and be starting my third just since last Thursday night.  That would be around 25/30 tanks a month at my current rate of frequency (which is much higher than any of my previous headache cycles over the past 6 years).  It seems a bit excessive to me.

First of all, very few clusterheads can abort an attack in a reasonable amount of time at 10 lpm. You can either get your doc to up the flow rate in his script, or do it yourself.

Second, a concentrator will only put out about 8-10 lpm, and that's after it's been running for 5 minutes or so. Even at that, they never reach a concentration of more than about 90%.

You'd be surprised at the difference in abort time at 15-25 lpm with 100% concentration vs. 8-10 lpm at 90% concentration. Usually less than half the time spent.

The other option is welder's O2. You can either rent or purchase a tank, buy your own regulator and mask, and start aborting your attacks for pennies per attack. Refills on a great big H or M tank, from what I've seen, run $20 to $30.

You are not a slave to your doctor's script. You have options.

Brew wrote on May 27^th, 2010 at 10:09am:

First of all, very few clusterheads can abort an attack in a reasonable amount of time at 10 lpm. You can either get your doc to up the flow rate in his script, or do it yourself. Second, a concentrator will only put out about 8-10 lpm, and that's after it's been running for 5 minutes or so. Even at that, they never reach a concentration of more than about 90%. You'd be surprised at the difference in abort time at 15-25 lpm with 100% concentration vs. 8-10 lpm at 90% concentration. Usually less than half the time spent. The other option is welder's O2. You can either rent or purchase a tank, buy your own regulator and mask, and start aborting your attacks for pennies per attack. Refills on a great big H or M tank, from what I've seen, run $20 to $30. You are not a slave to your doctor's script. You have options.

Thanks, Brew.  If I were to go that route...

#1) where does one acquire a regulator (and about what do they cost)?

#2) what is an H or M tank (I have a small tank -- about 11 pounds), where does one acquire them, cost?

#3) who would do the refills if I had my own tank?

Thanks again.  While I've been having the headaches for 6 years, all this oxygen stuff is entirely new to me (it will be one week tonight).

The answers to your questions (and many more, for that matter) can be found by clicking on the oxygen info link to the left of your screen.

Thanks.  I'll check it out.