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        Cluster Headache Help and Support >> Cluster Headache Specific >> my advice to newbies!!!!!!!!
        
(Message started by: kevmd on Feb 19^th, 2008, 3:33pm)

Title: my advice to newbies!!!!!!!!
Post by kevmd on Feb 19^th, 2008, 3:33pm

LIsten to what people on this board have to offer!!! Gator told me not to wait to get an o2 script. I did not listen to him and have been going through a ton of pain as a result. Its hard dealing with doctors and insurance companies while going through this but you have to. Each time I was banging my head, I was wishing I had the o2. I still do not have my o2, just had the doctor fax the script. The pain can tire you so much but you have to fight through it to get everything you need in your arsenal to fight it.

Title: Re: my advice to newbies!!!!!!!!
Post by LeLimey on Feb 19^th, 2008, 3:52pm

Hi Kev, I'm glad to hear you are finally on the road to O2! It's a blessed relief. Do you have a regulator or can you get one through the O2 company do you know? You need one that goes o 15 litres per minute and also you need non rebreather makes, the sort with the bag. Nasal cannula's aren't effective. Let's get you sorted with all the right equipment from the word go!

Keep us in the loop with how it's going and when you expect to get it all
Helen

Title: Re: my advice to newbies!!!!!!!!
Post by E-Double on Feb 19^th, 2008, 4:04pm

Title: Re: my advice to newbies!!!!!!!!
Post by Sandy_C on Feb 19^th, 2008, 5:23pm

I agree 100% to what Kev said to all newbies about using 02. It IS a godsend to many of us.

Kev is one of many CH sufferers who is now waiting and begging for the doctor's scrip for 02, then waiting for the insurance company to approve that scrip, and hoping that the doc prescribed the correct mask, regulator, etc.

If you newbies are experiencing this same wait time, meanwhile, you are getting hit badly, consider doing what I did.

I went to my local welder's supply house and rented an 02 tank (it's quite large, about 4' high, and a lovely accent to my living room decor). This cost me $56.00 for a 12 month rental, with refills of the tank at less than $17.00.

I purchased a non-rebreather mask (goes over 15 lpm) for about $25, and a regulator with bubbler for about another $25, through recommendations from folks on these boards. Don't know if these sources are still available, but check e-bay. E-bay sells everything!

This was a year ago. I still haven't convinced my doc to write the scrip for 02 (she's clueless), but at this point, I'll just stick with my welder's tank. It's the same stuff, and it works. Every time.

Just my two cents.

Sandy

Title: Re: my advice to newbies!!!!!!!!
Post by Langa on Feb 19^th, 2008, 6:22pm

I've gotten to the point where all I feel is a twinge and i'm getting my arsenal ready. If it's a fluke, you'll be ready anyway for when it isn't a fluke.

Trust us, you'll be so happy you got the 02, but it has to be used correctly. Sandy has a good post here. And she's right, most doctors are clueless.

Langa

Title: Re: my advice to newbies!!!!!!!!
Post by Linda_Howell on Feb 19^th, 2008, 6:55pm

Kev,

If you can't get a regulator that goes to 15 lpm and a non-rebreather mask or they want to charge you an arm and a leg for it...pm me your address and I will send you one.

Linda

Title: Re: my advice to newbies!!!!!!!!
Post by kevmd on Feb 19^th, 2008, 9:42pm

thanks Linda for your generosity. Its already being taken care of. Except for finding a welding supply place. I'll have to look one up and try to get a hold of a tank in the next day or two. Another pred taper will buy me a little bit of time. It does appear insurance is an issue. One med supply company said insurance doesn't cover o2 for clusterheadaches. Another is insisting on a machine and that they won;t just give me tanks.

Title: Re: my advice to newbies!!!!!!!!
Post by thebbz on Feb 19^th, 2008, 9:52pm

Quote:

One med supply company said insurance doesn't cover o2 for clusterheadaches.

Some do but you need a medical necessity form from the doc,and the proper medical coding from the supplier.

Quote:

Another is insisting on a machine and that they won;t just give me tanks.

Bull sheet. Go to another supplier
all the best, dont let em big league ya, get the right equipment.
thebb

Title: Re: my advice to newbies!!!!!!!!
Post by outofcommission on Feb 20^th, 2008, 1:36am

i have a buddy that supplies me with smaller bottles. i get my bigger welding bottles from tractors supply. i don't have insurance so this was my cheapest route. got the the regulators off ebay. . o2 is definitely a must!!

Title: Re: my advice to newbies!!!!!!!!
Post by outofcommission on Feb 20^th, 2008, 1:46am

on 02/19/08 at 21:42:00, kevmd wrote:

Another is insisting on a machine and that they won;t just give me tanks.

i think a machine might help you sleep but might not give you enough lpm to calm down an attack.

Title: Re: my advice to newbies!!!!!!!!
Post by totka2 on Feb 20^th, 2008, 2:39pm

- oxygen
- 15 l/min regulator (or 15+ l/min)
- Clustermasx (or build your own mask: http://www.mushys.com/O2/mymask.html)

PF

Steve

Title: Re: my advice to newbies!!!!!!!!
Post by Linda_Howell on Feb 20^th, 2008, 4:22pm

Kev,

Under Medical supply, Look up either 'Lincare' or 'Apria' in Philly. Both of those Companys regularily rent us our tanks for clusterheadaches.

I know you said you're in the process of getting a welding set-up and that is great.... but you can't exactly carry that tank around in the car or at work, so I'd sure like to see you get the e-tanks too.

Offer for the reg. and mask stills stands anytime you need it.

Linda

Title: Re: my advice to newbies!!!!!!!!
Post by Ray on Feb 20^th, 2008, 6:23pm

Linda,

Have I told you lately that I love you and that YOU ROCK?

Oh, I have, well I told you again.

Ray

Title: Re: my advice to newbies!!!!!!!!
Post by Linda_Howell on Feb 20^th, 2008, 6:55pm

Thanks Ray. I'm blushing now. http://bestsmileys.com/blushing/3.gif

Title: Re: my advice to newbies!!!!!!!!
Post by thebbz on Feb 20^th, 2008, 9:44pm

Luinda Rocks too. [smiley=headbanger.gif]
thebb

Title: Re: my advice to newbies!!!!!!!!
Post by kevmd on Feb 22^nd, 2008, 11:44am

Linda
Thanks....i will be looking for some e-tanks as well just for being able to leave the house. I'm still waiting my arrival of my first set up. Thak god I am still on a pred taper til its set up. If things don't look up for me after this 2nd taper, I'll have to get the e-tanks. I'll be in touch. My mother in law , a nurse, has volunteered to get me dome masks from the hospital. I should be getting those on saturday. I guess I'll have to buy the e-tanks at a med supply compnay. But where do you fill an e-tank? I do not think my insurance covers o2 for cluster headaches. Can't do that at a welder shop can you?

Title: Re: my advice to newbies!!!!!!!!
Post by Raija on Feb 22^nd, 2008, 12:04pm

I'm a newbie :), I got O2 in less than a week from when I was diagnosed (two weeks ago). My experience is that the worst attacks don't stop with O2 for me, and the others keep on coming, but it's healthier than the injections :).

Title: Re: my advice to newbies!!!!!!!!
Post by Linda_Howell on Feb 22^nd, 2008, 1:12pm

This is where you get them.

Quote:

Under Medical supply, Look up either 'Lincare' or 'Apria' in Philly. Both of those Companys regularily rent us our tanks for clusterheadaches.

Or any other medical supply place that may be in your area. Unlike the welding tanks you WILL need a script from your Dr. though.

Title: Re: my advice to newbies!!!!!!!!
Post by Guiseppi on Feb 22^nd, 2008, 1:23pm

You don't have to buy the E-tanks. Before my insurance coverage picked up the tab, I was renting my e-tanks from Phusicians Medical Supply, a retail outlet for medical stuff. They rent the tanks for $4.50 a month, and were charging me $11 for a refill. The nice thing about that is you just drop off the empties and exchange it for a full one. Waiting for them to fill a private tank can take up to several hours.

As Linda said you will need a prescription to obtain 02 this way.

Guiseppi

Title: Re: my advice to newbies!!!!!!!!
Post by Poli on Feb 22^nd, 2008, 2:04pm

on 02/22/08 at 12:04:53, Raija wrote:

Wellcome Raija, do you use a NON-rebreather mask, 15 lpm and stay after end of pain some minutes? These 3 things are important.
Saludos
Poli

Thank you Linda

Title: Re: my advice to newbies!!!!!!!!
Post by Linda_Howell on Feb 22^nd, 2008, 2:18pm

Quote:

rebreather mask

NON-rebreather mask.

Title: Re: my advice to newbies!!!!!!!!
Post by Raija on Feb 23^rd, 2008, 1:20pm

I have one of those masks with a bag on (is that what you mean?). And have been told to use 7L, but I use 9L, and stay on after the pain is gone for a few minutes. But it doesn't work on the worst attacks.

Title: Re: my advice to newbies!!!!!!!!
Post by brewcrew on Feb 23^rd, 2008, 1:40pm

on 02/23/08 at 13:20:04, Raija wrote:

A non-rebreather will allow NO ambient room air in when you inhale. All the holes in the mask must be closed off during inhalation. The bag is merely a reservoir for O2 coming in from the tank as you are exhaling.

You should probably be up around the 12-15 lpm range to do any good. I can get by with 10 lpm. If it doesn't work on the worst attacks, it probably means you haven't gotten to it soon enough. Most times. There have been a few times where 15 lpm did me no good, even when I hit it early on.

Title: Re: my advice to newbies!!!!!!!!
Post by Raija on Feb 24^th, 2008, 3:20pm

on 02/23/08 at 13:40:07, brewcrew wrote:

Then I think I have the right type of mask. I have increased to 12l now, and its better, but doesn't take all the pain. It comes back within minutes. :(

Title: Re: my advice to newbies!!!!!!!!
Post by brewcrew on Feb 24^th, 2008, 3:23pm

I, along with many others here, stay on the O2 for about 5 minutes after the pain is gone. That usually helps to keep the beast at bay for awhile longer.

Title: Re: my advice to newbies!!!!!!!!
Post by Becky on Feb 24^th, 2008, 5:32pm

Hi folks Im a newbie avnt tried o2 yet meds seem 2 be workin at mo!!!! Was gunna try my moms cuz she has lung prob but dont think she wud like me banging on her door at 2 in the morning ;;D. Thanks for advice next meds review I will talk to my doctor about it.

Title: Re: my advice to newbies!!!!!!!!
Post by brewcrew on Feb 24^th, 2008, 5:52pm

Best thing about O2 - no side effects.

Title: Re: my advice to newbies!!!!!!!!
Post by vietvet2tours on Feb 24^th, 2008, 7:26pm

on 02/24/08 at 17:52:24, brewcrew wrote:

Best thing about O2 - no side effects.

2nd that

Title: Re: my advice to newbies!!!!!!!!
Post by Becky on Feb 24^th, 2008, 8:13pm

Thanks guys will have 2 give it a go cuz some of the side effects aint nice :(. Doctor has 2 be careful with my meds cuz Im asthmatic and she said some of them can upset my lungs that much I would have to go to hospital if I had an asthma attack

Title: Re: my advice to newbies!!!!!!!!
Post by av8r3400 on Feb 24^th, 2008, 11:37pm

Will the 15 LPM regulator attach to a welding tank directly, or do you need to use and adapter of some sort?

A full welding tank has 2000 + psi of pressure in it, this can easily explode something not designed for that.

Title: Re: my advice to newbies!!!!!!!!
Post by brewcrew on Feb 25^th, 2008, 7:53am

on 02/24/08 at 23:37:02, av8r3400 wrote:

All of your little medical O2 tanks are filled to 2000 psi as well. Just as volatile.

I have never used welder's O2, but I believe you will need an adapter. Hopefully someone will come along who knows how to do that.

Title: Re: my advice to newbies!!!!!!!!
Post by Mr. Happy on Feb 25^th, 2008, 1:09pm

"Welding" O2 is strictly a 540 connection.
Medical O2 can be 540 or 870, depending on tank size.

http://mushys.com/O2/regulators.jpg

US generalization only. Maybe Canada. I don't know about the UK or Hungary.