Click this link to read a post I like on the clusterheadaches.com message board...

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Hi from St. Louis Reply #25 - Mar 31^st, 2010 at 10:22am Before I got insurance to pick up my 02 I was renting E tanks for $4.50 a month apiece, and paying around $12 each time I took them in for refills. Now that the insuranc epays I keep 8 E-tanks in a cute little carrier in the garage!!! Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

Jeannie

CH.com Sponsor

Offline

Live, Laugh, Love....

Posts: 2333
St Louis, Missouri
Gender: female

Re: Hi from St. Louis
Reply #26 - Mar 31^st, 2010 at 11:22am

melissa76767 wrote on Mar 30^th, 2010 at 11:46pm:

Hi
I am also from Saint Louis. I am 31 years old and have been dealing with this since I was 16. I don't have a lot of time to talk right now, but I did want to mention the Ryan's headache clinic. They know everything about CH and make people with CH a priority. I am so glad I found them!

I love the Ryan HA clinic. They are wonderful!

Welcome to CH.com!

Jeannie

Back to top

"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

IP Logged

Brew

CH.com Sponsor
CH.com Alumnus

Offline

Posts: 14163

Re: Hi from St. Louis
Reply #27 - Mar 31^st, 2010 at 1:45pm

Quote:

You are sooooooooooooo lucky your CH only last a few weeks...by lucky of course I mean that they don't last long!

Not so fast. Many chronic sufferers here say honestly that they prefer being chronic (most of them have been both episodic and chronic). It takes the guesswork, and thus the uncertainty and dread, out of dealing with when the next one will come.

Perhaps in your case the grass is greener on the other side of the fence....

Back to top

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

IP Logged

Brew

CH.com Sponsor
CH.com Alumnus

Offline

Posts: 14163

Re: Hi from St. Louis
Reply #28 - Mar 31^st, 2010 at 3:05pm

Cece wrote on Mar 31^st, 2010 at 1:59pm:

The grass is greener on the other side of the fence???????
That's messed up! I love my grass and don't wish for any other thank you.
Perhaps some people like being chronic but my husband was just fine with being episodic.

I don't mean to be rude but that comment really hurts my feelings! Sorry if perhaps I took it the wrong way.

All I meant is my husband could use a damn break! Of course it's no fun when you fear the beast coming back after so long but we don't know what it's like any more not to have a visit just about every day.

They're your feelings, and I can't control them. I was merely restating what many chronics here have stated themselves. There is absolutely no value judgment in my statement, and nowhere did I say anyone LIKED being chronic. I said they PREFERRED it. I think they'd all say they would LIKE to be pain free.

We could all use a damn break.

Back to top

« Last Edit: Mar 31^st, 2010 at 4:58pm by Brew »

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

IP Logged

Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Hi from St. Louis Reply #29 - Mar 31^st, 2010 at 3:57pm Hey Joe, How big is an E tank compared to an M? I wish I had one small enough to put in my car. My M tanks are huge and on stands which make them even heavier. Jeannie
Back to top	"It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

Brew

CH.com Sponsor
CH.com Alumnus

Offline

Posts: 14163

Re: Hi from St. Louis
Reply #30 - Mar 31^st, 2010 at 4:01pm

Jeannie wrote on Mar 31^st, 2010 at 3:57pm:

Hey Joe,

How big is an E tank compared to an M? I wish I had one small enough to put in my car. My M tanks are huge and on stands which make them even heavier.

Jeannie

Can't you order different sizes in the same delivery?

I always tell them I want x M-tanks, y E-tanks, and z D-tanks.

Back to top

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

IP Logged

Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Hi from St. Louis Reply #31 - Mar 31^st, 2010 at 4:05pm I don't know. My doc arranged for my tanks and he set me up with two M's. I guess if I asked he might order me a different size. How much smaller is an E?
Back to top	"It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Hi from St. Louis Reply #32 - Mar 31^st, 2010 at 4:17pm The E is the long, slender one in the center. The M is the second largest one in the entire picture, just to the right of the E. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

Click Here to visit the CH.com Facebook page!

Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Hi from St. Louis Reply #33 - Mar 31^st, 2010 at 4:18pm Don't call your doc - call the supplier. The size of the tank isn't specified in the Rx.
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

QnHeartMM

CH.com Sponsor

Offline

I AM a Phoenix!

Posts: 1783
San Diego, CA
Gender: female

Re: Hi from St. Louis
Reply #34 - Mar 31^st, 2010 at 4:40pm

Joe got 8 E-tanks from our new supplier Apria. The delivery guy seemed like he would have given me anything I wanted. Plus he gave me this nice rack/stand to put them in. Previously they were all lined up in the garage and to be honest I worried about them falling over, hitting them with the car, etc. This is really nice. Oh and they also gave him a little wheelie cart for the tank he's currently using although Joe just seems to just carry it around rather than use the cart.

I think next time I'll ask about one of those "baby" tanks like Brew carried around the day we visited the Basilica in St. Louis. We actually have an empty tank like that so I'll see if we can get a trade. That is a great size for taking in the backpack for trips to the zoo etc.

Back to top

Treat people with kind words.

IP Logged

Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Hi from St. Louis Reply #35 - Mar 31^st, 2010 at 4:57pm Christy - That would be a "D" tank (second from the left, in the back).
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Hi from St. Louis Reply #36 - Mar 31^st, 2010 at 5:22pm Brew, you're pretty handy to have around! Christy, I have the stands too. They are nice ...
Back to top	« Last Edit: Mar 31^st, 2010 at 5:30pm by Jeannie » "It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

Brew

CH.com Sponsor
CH.com Alumnus

Offline

Posts: 14163

Re: Hi from St. Louis
Reply #37 - Mar 31^st, 2010 at 5:27pm

Jeannie wrote on Mar 31^st, 2010 at 5:22pm:

Brew, you're pretty handy to have around! Wink

That may be so, but did you call your oxygen supplier yet? Wink

And just so you know, an M-tank will require a CGA-540 regulator, whereas an E-tank will require a CGA-870 regulator, so you might want to let them know that you'll need a regulator to go with the E-tank.

They have different fittings.

Back to top

« Last Edit: Mar 31^st, 2010 at 5:32pm by Brew »

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

IP Logged

Racer1_NC CH.com Moderator CH.com Alumnus Offline "Well, let's go see." Posts: 4417 Lewisville, NC Gender:	Re: Hi from St. Louis Reply #38 - Mar 31^st, 2010 at 7:44pm Unless I miss my guess, she has a reg that'll fit a med tank.
Back to top	“We see what we believe, not the other way around." — Varga IP Logged

Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Hi from St. Louis Reply #39 - Mar 31^st, 2010 at 10:12pm Racer1_NC wrote on Mar 31^st, 2010 at 7:44pm: Unless I miss my guess, she has a reg that'll fit a med tank. I think you might be right, Beeyul, thanks to a handsome man with a southern drawl...
Back to top	« Last Edit: Mar 31^st, 2010 at 10:13pm by Jeannie » "It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Hi from St. Louis Reply #40 - Mar 31^st, 2010 at 11:33pm I have been on Verapamil for 19yrs. I started CH as a chronic and been episodic since the Verap. I don't have the nerve to change now. Don
Back to top	Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not. IP Logged

Click Here to visit the CH.com Facebook page!

MikeO

CH.com Newbie

Offline

I Love CH.com!

Posts: 8

Re: Hi from St. Louis
Reply #41 - Apr 1^st, 2010 at 11:30pm

Jeannie wrote on Mar 29^th, 2010 at 10:23am:

BTW, I get my energy drinks from Aldi. They are called Red Thunder and are much cheaper.

Jeannie

Thanks Jeannie! You guys may laugh, but it was tough trying to pound down a 16oz Monster the other night! Think I'll stick to the 8oz Red-somethings...

A few other rookie questions for you...

1. My O2 supplier only supplies D and E tanks at $8 each regardless of size. Just used a whole D tank at work today keeping the beast at bay. For those that have M tanks at home, are they medical tanks or welding tanks...and if welding, how did you arrange it, how do you store it, and how do you refill?
2. Did anyone else need a Rx to get your Optimask ordered? (I lucked out again in that my GP just faxed it to Lifegas! What a guy!)
3. Bear with me on this one as I'm still trying to calibrate to your lingo...this is regarding the "correct" O2 hit-abort procedure. I understand the "need for speed"...but often I have a lingering dull background ache most of the day (shadow?), so it's tough to gauge right when a new hit is coming until the first stabs of pain or burning. After going on 12 lpm O2 for 10 mins, it got me back to the background ache...but never went completely away. Then when I shut it off, the hit came back about 20 mins later. Is it your experience that if I just stay on it longer it should go away? I also tried the 10 min break thing today, and subsequently ran the D tank empty. This seemed to keep it away for the rest of the day. Anyway (ramble), just looking for some expert perspective and tips on using O2 the right way without wasting it. I love not agonizing over whether to break out one of my few remaining Imitrex injections!

Back to top

IP Logged

Skyhawk5

CH.com Alumnus

Offline

I love YaBB 1G - SP1!

Posts: 1320
Ypsilanti, Mi. USA
Gender: male

Re: Hi from St. Louis
Reply #42 - Apr 2^nd, 2010 at 12:16am

Unless you have to have the D tanks I would just get E's. It's a little unusual for the O2 shop to not have M's, you may want to make sure your Rx reads home & portable. If it doesn't say home they won't give it to you.

You Could've bought the Optimask right here @ the CH.com store with no Rx.

The best way to abort with O2 is to, sit or stand up straight, no bending over, start at the 1st sign on your highest lpm and hyperventilate the O2, then when the pain is going away turn the flow down and breathe normal, or slowly, for 5-15min. to help with the hit returning. Works for me & others.

I have a medical M-tank, welding comes in similar that you take in and exchange for a full one.

Kick the beasts butt, Don

Back to top

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

IP Logged

Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Hi from St. Louis Reply #43 - Apr 2^nd, 2010 at 12:35am Please go to the following link for O2 info. It's the "oxygen info" from the left side of this screen. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
Back to top	Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not. IP Logged

Guiseppi

CH.com Moderator
CH.com Alumnus

Offline

San Diego to Florida 05-16-2011

Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male

Re: Hi from St. Louis
Reply #44 - Apr 2^nd, 2010 at 9:45am

I'm one of those who gets a return headache within 10-20 minutes of shutting off the 02. I used to take 2 oral cafergot when I startred the oxygen, the 02 would kill it, the cafergot prevented a re attack. At the suggestion of several on the board I now drink a Red Bull at the start of an attack as I start the oxygen. Going into the 4th month of a stubborn fu$#%% cycle and so far the red bull is working as well as the cafergot did.

When I use the red bull this way I don't chug it. Christy pours one "on the rocks" when she sees or hears me break out the E-tank. I take swallows between breaths of 02. It's nice cuz it keeps my throat from drying out with the 02. Cuts down on re attacks and oxygen use.

I've also chased 2 "excederin migrain" with a Red Bull to get rid of the shadows. Just don't make that a habit as too many otc meds is just begging for rebound hits. Others use "4Way Nasal Spray" for shadows. That's the name brand of the stuff. I bought some this cycle but haven't had to try it yet.

Joe

Back to top

"Somebody had to say it" is usually a piss poor excuse to be mean.

IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!