Author |
Topic: my advice to newbies!!!!!!!! (Read 1681 times) |
|
kevmd
New Board Veteran
Who needs a hypothalamus anyway?
Gender: 
Posts: 148
|
 |
my advice to newbies!!!!!!!!
« on: Feb 19th, 2008, 3:33pm » |
 Quote  Modify
|
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.
|
|
 IP Logged |
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
 
 
Gender: 
Posts: 11720
|
|
Re: my advice to newbies!!!!!!!!
« Reply #1 on: Feb 19th, 2008, 3:52pm » |
Quote Modify
|
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
|
|
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
 
Gender:
Posts: 6458
|
|
Re: my advice to newbies!!!!!!!!
« Reply #2 on: Feb 19th, 2008, 4:04pm » |
Quote Modify
|
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
Sandy_C
CH.com Alumnus
New Board Hall of Famer
Burn that bra!
Gender:
Posts: 2585
|
|
Re: my advice to newbies!!!!!!!!
« Reply #3 on: Feb 19th, 2008, 5:23pm » |
Quote Modify
|
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
|
|
IP Logged |
Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
|
|
|
Langa
CH.com Alumnus
New Board Hall of Famer
So many donuts, such little time...
Gender:
Posts: 4179
|
|
Re: my advice to newbies!!!!!!!!
« Reply #4 on: Feb 19th, 2008, 6:22pm » |
Quote Modify
|
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
|
|
IP Logged |
When you saw only one set of footprints, it was then that I carried you.
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
Gender:
Posts: 6721
|
|
Re: my advice to newbies!!!!!!!!
« Reply #5 on: Feb 19th, 2008, 6:55pm » |
Quote Modify
|
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
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
kevmd
New Board Veteran
Who needs a hypothalamus anyway?
Gender:
Posts: 148
|
|
Re: my advice to newbies!!!!!!!!
« Reply #6 on: Feb 19th, 2008, 9:42pm » |
Quote Modify
|
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.
|
|
IP Logged |
|
|
|
thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
Gender:
Posts: 2181
|
|
Re: my advice to newbies!!!!!!!!
« Reply #7 on: Feb 19th, 2008, 9:52pm » |
Quote Modify
|
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
|
|
IP Logged |
It wasn't me I didn't do it
|
|
|
outofcommission
CH.com Alumnus
New Board Veteran
damn......no place to park
Gender:
Posts: 179
|
|
Re: my advice to newbies!!!!!!!!
« Reply #8 on: Feb 20th, 2008, 1:36am » |
Quote Modify
|
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!!
|
| « Last Edit: Feb 20th, 2008, 1:42am by outofcommission » |
IP Logged |
that which does not kill you will only make you crazy, obsessive, and sleep deprived
|
|
|
outofcommission
CH.com Alumnus
New Board Veteran
damn......no place to park
Gender:
Posts: 179
|
|
Re: my advice to newbies!!!!!!!!
« Reply #9 on: Feb 20th, 2008, 1:46am » |
Quote Modify
|
on Feb 19th, 2008, 9:42pm, 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.
|
|
IP Logged |
that which does not kill you will only make you crazy, obsessive, and sleep deprived
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
Gender:
Posts: 6721
|
|
Re: my advice to newbies!!!!!!!!
« Reply #11 on: Feb 20th, 2008, 4:22pm » |
Quote Modify
|
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
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
Ray
CH.com Alumnus
New Board Hall of Famer
Ray and Shade
Gender:
Posts: 1118
|
|
Re: my advice to newbies!!!!!!!!
« Reply #12 on: Feb 20th, 2008, 6:23pm » |
Quote Modify
|
Linda,
Have I told you lately that I love you and that YOU ROCK?
Oh, I have, well I told you again.
Ray
|
|
IP Logged |
You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
http://www.myspace.com/rayplace
http://www.shadesgarden.com
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
Gender:
Posts: 6721
|
|
Re: my advice to newbies!!!!!!!!
« Reply #13 on: Feb 20th, 2008, 6:55pm » |
Quote Modify
|
Thanks Ray. I'm blushing now. 
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
Gender:
Posts: 2181
|
|
Re: my advice to newbies!!!!!!!!
« Reply #14 on: Feb 20th, 2008, 9:44pm » |
Quote Modify
|
Luinda Rocks too. 
thebb
|
|
IP Logged |
It wasn't me I didn't do it
|
|
|
kevmd
New Board Veteran
Who needs a hypothalamus anyway?
Gender:
Posts: 148
|
|
Re: my advice to newbies!!!!!!!!
« Reply #15 on: Feb 22nd, 2008, 11:44am » |
Quote Modify
|
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?
|
|
IP Logged |
|
|
|
Raija
New Board Newbie
I love YaBB 1G - SP1!
Posts: 6
|
|
Re: my advice to newbies!!!!!!!!
« Reply #16 on: Feb 22nd, 2008, 12:04pm » |
Quote Modify
|
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 .
|
|
IP Logged |
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
Gender:
Posts: 6721
|
|
Re: my advice to newbies!!!!!!!!
« Reply #17 on: Feb 22nd, 2008, 1:12pm » |
Quote Modify
|
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.
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
Guiseppi
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2703
|
|
Re: my advice to newbies!!!!!!!!
« Reply #18 on: Feb 22nd, 2008, 1:23pm » |
Quote Modify
|
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
|
|
IP Logged |
Why are all sensors, seeking intelligent life, pointed AWAY from earth?
|
|
|
Poli
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 22
|
|
Re: my advice to newbies!!!!!!!!
« Reply #19 on: Feb 22nd, 2008, 2:04pm » |
Quote Modify
|
on Feb 22nd, 2008, 12:04pm, Raija wrote:| 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 . |
|
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
|
| « Last Edit: Feb 23rd, 2008, 5:39am by Poli » |
IP Logged |
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
Gender:
Posts: 6721
|
|
Re: my advice to newbies!!!!!!!!
« Reply #20 on: Feb 22nd, 2008, 2:18pm » |
Quote Modify
|
Quote:
NON-rebreather mask.
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
Raija
New Board Newbie
I love YaBB 1G - SP1!
Posts: 6
|
|
Re: my advice to newbies!!!!!!!!
« Reply #21 on: Feb 23rd, 2008, 1:20pm » |
Quote Modify
|
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.
|
|
IP Logged |
|
|
|
Brew
CH.com Alumnus
New Board Hall of Famer
Low Four!
Gender:
Posts: 6515
|
|
Re: my advice to newbies!!!!!!!!
« Reply #22 on: Feb 23rd, 2008, 1:40pm » |
Quote Modify
|
on Feb 23rd, 2008, 1:20pm, Raija wrote:| 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. |
|
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.
|
|
IP Logged |
Always remember that you're unique, just like everyone else.
|
|
|
Raija
New Board Newbie
I love YaBB 1G - SP1!
Posts: 6
|
|
Re: my advice to newbies!!!!!!!!
« Reply #23 on: Feb 24th, 2008, 3:20pm » |
Quote Modify
|
on Feb 23rd, 2008, 1:40pm, brewcrew 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. |
|
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. 
|
|
IP Logged |
|
|
|
Brew
CH.com Alumnus
New Board Hall of Famer
Low Four!
Gender:
Posts: 6515
|
|
Re: my advice to newbies!!!!!!!!
« Reply #24 on: Feb 24th, 2008, 3:23pm » |
Quote Modify
|
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.
|
|
IP Logged |
Always remember that you're unique, just like everyone else.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss