Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> First post - O2 generator?
        
(Message started by: Grinner62 on Aug 8^th, 2007, 12:53pm)

Title: First post - O2 generator?
Post by Grinner62 on Aug 8^th, 2007, 12:53pm

Lurking for a while.
I've been dealing with the beast for almost 20 years now. Retired Air Force, so most of it was with military medicine. Stick a motrin in a hollow point???
I've had O2 for the past couple years. Has never worked. Gave me something to do waiting for the drugs to knock me out.
No, I don't have a non rebreather. Going to pick one up today. This new med supply place wants to set me up with an O2 generator (10 LPM). Old one gave me the "deer in the headlight :o " look when I asked about a non rebreather mask (OKthanks, bye). Reading around here I'm not convinced the generator is going to work out when the beast returns. Comments?
This year is the first time I've tried Imitrex. Wonderful stuff. Threw away all the narcotics. Of course it was at the end of a viscous cycle...remember military medicine? Amazing what happens when you barf in the Dr's office from taking opiates.
They'll keep me doped up on opiates, but I can't try seeds or shrooms because I need to maintain a security clearance for my job. Preventive has been limited to Toprol, worked for about a year. No steroids due to Diabetes.
Anyway...Learning to live with hope for the future now that I have something to knock the beast down with.

Title: Re: First post - O2 generator?
Post by Guiseppi on Aug 8^th, 2007, 1:39pm

10LPM is a failry low flow. Someone recently posted that hooking 2 together makes a strong enough flow. I use a demand regulator because the way I huff even a 15 LPM probably wouldn't work for me.

The biggest key to getting the 02 to work is 100% oxygen. When you get a non rebreather mask suck test it against your face the same way you test your gas mask. If it won't stick you may have to tape over valves. Outside air or rebreathing air can cause the 02 to get diluted. When that happens you won't get the vaso constrictor affect you need. One more point, no matter which mask you get cut the straps off so if you fall asleep while using it you won't suffocate.

You haven't mentioned lithium. I'm in law enforcement so like you I'm very limited in my choices, more so because I can't carry a weapon if i do any of the schedule II or III stuff. Lithium, at 1200 mg a day, blocks 80-90% of my headaches. 02 and the occasional imitrex jab do the rest. For dosage compariosn I'm 47, male, weigh about 190. I'm episodic, ususally 2x a year 8-12 week cycles.

Might be something worth trying out. Good luck and welcome to the board.

Title: Re: First post - O2 generator?
Post by Linda_Howell on Aug 8^th, 2007, 2:19pm

If, for some reason you don't get the mask...PM me (right under my name in case you're not familiar with that) and I will get one to you ASAP.

Linda

Title: Re: First post - O2 generator?
Post by Rosybabe on Aug 8^th, 2007, 6:29pm

Hi Grinner!!

Welcome aboard!!

Hope you get the right stuff for the O2, it is a very good abortive and does not bring side effects.

If you have night hits Melatonin can help. I take 9 mg every night and spaces the hits out quite a bit.

Regulators can be found in ebay, I bought one just the other day and it was a good price.

Hoping you get to feel better soon.

Pain free wishes for you!!

Rosy.

Title: Re: First post - O2 generator?
Post by DennisM1045 on Aug 9^th, 2007, 7:57am

Hi Grinner,

I looked into O2 Generators recently. I found a few key flaws:

a) They only guarantee 85%-95% O2 delivery. They don't alarm till the fall below 85%. Halting a CH requires 100% O2 very quickly.

b) They can take 5 to 10 minutes to ramp up to their maxiumum O2 delivery. This is way too long while you are waiting to abort an attack.

My posts here on the board didn't yield anyone who was having success with them.

So... Tell em you want a tank - Instant, 100% O2 ;;D

Good luck and PF wishes to ya.

-Dennis-

Title: Re: First post - O2 generator?
Post by Barry_T_Coles on Aug 9^th, 2007, 7:53pm

Hi Grinner!!

Welcome [smiley=wave.gif]

Like most others here I looked at the generators as a possible cost effective way of battling the beast & came up with the same result; not enough quick enough pure enough to do the job and to get anywhere near a bottle’s efficiency I would have to run 2 generators side by side.

At the bottom of my post you will see a link to Mr Happy’s site that describes what you will need to get for an o2 setup, it applies to Oz but will give you a guide.

Cheers
Barry

Title: Re: First post - O2 generator?
Post by Grinner62 on Aug 11^th, 2007, 1:37am

Thanks all,
My internet was down, so I'm just catching up on the replies.

I picked up the non rebreather and the generator. I'll try anything once.

You're right, ten is too low. I can breathe if I take slow deliberate breaths. I don't suspect that's going to happen when I need it. I have to laugh about the O2 bottles with the 8 lpm reg, I can't get half a breath now that I have the right mask.

Guiseppi, Erowid kinda scares me about the Lithium. I take a diuretic for blood pressure. I'll ask the doc about it next time I go in. Maybe he'll take me off a pill for once.

I've got time, usually get hit Spring and fall for a couple months. Although I've had the shadows constantly since the last bout in April.

Title: Re: First post - O2 generator?
Post by rolo65 on Aug 11^th, 2007, 2:13am

Lithium is a scary thought, and I havent gone there yet but tried just about everything else and the O2 is the most reliable for me :)

PFD&N to you :)

Edit to add; the tank is the only way you can realy crank it up when it counts! ;)

Title: Re: First post - O2 generator?
Post by Maffumatt on Aug 11^th, 2007, 1:31pm

my generator is a 10 lpm machine, with a little tinkering and a set of gauges I found it will put out 13 lpm. There is a block on the valve that sets the flow rate that can be removed. It serves my needs.

Title: Re: First post - O2 generator?
Post by Jonny on Aug 11^th, 2007, 2:24pm

on 08/11/07 at 02:13:46, rolo65 wrote:

Lithium is a scary thought,

Dont be scared, dude....I took 600 mgs every day for 14 years and I was fine. it stopped 85% of the HA's.

Title: Re: First post - O2 generator?
Post by Brewcrew on Aug 11^th, 2007, 2:40pm

I've heard several people here say they're scared of lithium, and I'm not sure why.

I've been on 900mg/day for a few years now. It's the only preventative from which I get little to no side effects.

Title: Re: First post - O2 generator?
Post by Grinner62 on Aug 17^th, 2007, 11:38pm

They finally got my cable internet fixed. Had a bad cable from the pole to my house. Acted like a bandpass filter, let the cable TV signal through but not the freqs that the cable modem uses. A week to troubleshoot and ten minutes to fix.

Thanks for the responses.

The quote from Erowid that disturbs me because I take diuretics is:

"Since anything that can cause dehydration can cause a potential fatal elevation in lithium level, people taking duiretics or having kidney problems should avoid this drug."

As to the O2, sounds like the bottle is the way. I'll get a bigger regulator.

In the meantime, should I keep Imitrex in the fridge to extend its storage time? Tricare only gives 10 refills every 90 daze so I'm in stock up mode.

Title: Re: First post - O2 generator?
Post by rolo65 on Aug 17^th, 2007, 11:57pm

on 08/11/07 at 14:40:14, Brewcrew wrote:

I've heard several people here say they're scared of lithium, and I'm not sure why.

I've been on 900mg/day for a few years now. It's the only preventative from which I get little to no side effects.

I’m seeing the nero on Monday and I'm afraid to try lithium also. It's one of the last resort med's and I guess I feel a bit of stigma about it? I need to work up a list of questions for this so called top guy in town whom I think sucks. If he pisses me off I’m going back to my old one who was less educated on CH (they all call Dr. Taylor for info?) but much more user friendly!

My current nero is a prevent freak and he just don’t understand why I cant take the drugs (like it's my falt the med's don't work), or why they don’t work for me. His name is DR Fred Taylor @ Park Nicollet Neurology Headache clinic in Minneapolis. I think he’s an idiot but what do I know, I’m just a whining cluster-f-head to him. He just doesn’t feel my pain or care as far as I’m concerned!

Rolo…………………………………………………………………………

Title: Re: First post - O2 generator?
Post by luveemom on Aug 18^th, 2007, 11:19am

I have an o2 generator hooked up to a tank and together they put out about 15lpm......I don't like the generator alone though. It is like breathing room air, it is warm air....and I like the feel of the cool air from the tank o2.....the place we got it from convinced my hubby, and this guy never even heard of a CH......I would not recommend it.....and it costs $250 per month! I want hubby to take it back ASAP....hate it.......

good luck..
alicia

Title: Re: First post - O2 generator?
Post by southwalessunshine on Aug 21^st, 2007, 8:11am

When I got 02 delivered for the first time a week ago, i noticed they didn't leave me a non re breather mask, so I called the 02 people, not the doc and they said that all cluster patients MUSThave a non re breather mask, any other type will not work! Also they said it had to be 100% at 15 lpm, or there's no point taking it, you're just wasting your time .I was glad I spoke to them as my doc surgery is pretty clueless in this dept, because I could've been sucking on the wrong prescription, thought it didn't work for me and give up on it, when really the right prescription could've been the answer I was waiting for.

Title: Re: First post - O2 generator?
Post by Asa on Aug 21^st, 2007, 9:57pm

Hey, grinner. Retired Af here as well AND still on the government teat as a DoD civilian. I have the same security clearance issues (linguist career field, if you're familiar with it). "Back in the day" a friend of mine in the same field had to call the SPs and have them make an entry on the Police Log every time he took his meds (probably opiates) for his migraines; just in case we got hit with a golden flow the next day. At least those days are gone. My Dr. has me on Zebutal (a Barbituate/Caffeine mix) right now and I've been nailed for urinalysis twice soon after taking them...no calls. So, I guess barbituates aren't on the list of testable items.
I'm like you though, how come we can't at least try the shrooms?

Title: Re: First post - O2 generator?
Post by Callico on Aug 22^nd, 2007, 11:55am

Hi and welcoem aboard. Thanks for your service! I really appreciate it.

You ahve gotten the word on the O2. Don't worry about the Lithium, although DO talk with your Dr about it. I was on it for a while, until it stopped working. The only side effect I had with it was tinnitus, but that was worth the relief.

Have you tried Red Bull? If I hit it right away at the onset of a hit and slam it down without stopping ity will usually break a hit for me in 5-10 minutes, or at least knock it back to a tolerable level. (Any of the energy drinks with Taurene will work. I like the Monster sugar free better than Red Bull for taste. If you can find RipIt it is cheapest. Super Walmarts usually have it in the deli. Don't know why.)

Go to the Meds page and look up Kudzu. I have been using it for the last five months and have been virually pain free for the last four, and I'm chronic! I strongly recommend it! To the best of my knowledge it has no side effects that would affect you, but check it out carefully first. Nani can gie you more info on it that I can. She has been a real help to me with it.

Hop this helps.

Jerry