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kat_92

Question about oxygen!! South Florida area!

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I have decided to go without my insurance to obtain the tanks. It is taking too long and I am getting desperate. I am willing to either get it directly from a medical supply store with my prescription, or a welding store. I do not mind paying at this point. 

Is there anyone in the south Florida area that has experience obtaining tanks without insurance and can give me some places like good welding suppliers or medical supply companies that carry tanks? I have already purchaes a non rebreather mask. 

Abother issue, my doc prescribed 5lpm which I know won’t do much. I was so grateful that I even got a script that I didn’t fight this. If I purchase a regulator 15 lpm or 25 lpm, can I still use it with this prescription flow? I can right? I’m sure the tank will run out in like 20 minutes but it is possible? Any and all help is appreciated 

Kat 

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..."Abother issue, my doc prescribed 5lpm which I know won’t do much. I was so grateful that I even got a script that I didn’t fight this."

...consider yourself fortunate...a clusterhead NEEDS a diagnosis (for MANY reasons and most wait years) AND an O2 script (many ignorant physicians won't even write)...it don't matter a damn what the script says....it is the "ticket to ride"...

"If I purchase a regulator 15 lpm or 25 lpm, can I still use it with this prescription flow? "

...YUP...nobody cares what flow you actually use...regulators go from 0 up...

"I can right? I’m sure the tank will run out in like 20 minutes but it is possible? Any and all help is appreciated" 

...don't focus too much on using the "right" flow...it's different for different folks.....you'll figure it out...start high and go lower til it don't work...then go back up...

….just generally, for budgeting purposes, an e-tank lasted me 2-3 hits and an m tank 5-6 hits... YMMV...

Best

Jonathan

.

 

Edited by jon019

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It is usually best not to tell a welding supplier that you are going to breathe it. Many say it is for a cutting torch. Or that a relative needs it for welding. Just about anything will fly as long as you don't say it is for you to breathe.

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You have to go to a medical oxygen supplier, which is not the same thing as a medical supply store.  Type "oxygen suppliers" and the place where you live into google.  Or look for Lincare, Praxair, Airgas, Linde, Apria . . . those are some common ones.  It's pretty common for doctors to fax an O2 prescription directly to a supplier. Does s/he not know any?  You could call neurologists, or hospitals, or assisted living places or nursing homes -- they all would have relationships with O2 suppliers.

But if your doctor wrote your prescription for 5lpm, you are probably not going to get the tanks you need, because that is easily satisfied by a concentrator, which is pretty unsatisfactory for CH. 

The national suppliers I listed above all have "industrial gas" divisions that will sell you welding O2.  Or google welding supplies and the place where you live.

I think I have already linked you to these, but in case . . . .

https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

 

 

Edited by CHfather

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@CHfather yes they did fax the script; however they are under the impression that I am going through my insurance which I do not want to do. They said it can take up to weeks with the insurance. I believe it is lincare. 

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Sorry if I missed something. . . .  If Lincare has the prescription and you want to get O2 from a medical supplier, can't you just tell Lincare you want to self-pay?  Have they said they won't accept that, even while you're waiting for insurance?  

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@CHfather I haven’t spoken to them directly yet. This was Friday afternoon and I was talking with my insurance company and they said the only way they cover it is if I take a blood test which tests my red blood cells oxygen level. And they said if it’s normal they won’t cover it. Im going to call lincare this morning and tell them I want to self pay. I just was not sure if I could get a tank else where out of pocket that was medical grade. My parents are super skeptical about welding o2. I gave them the link to this site and told them to read up and learn about what I’m going through. They are still under the impression that it’s just “a bad headache”. So frustrating. Will keep you updated 

Kat 

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@CHfather update, lincare won’t sell an o2 tank even with a script for headaches because headaches are not a life threatening emergency. Lincare EXACT words. Just got off the phone with my doc and he said yeah that’s not uncommon so he needs to call around and find a place that accepts the script. I’m at a complete loss. It looks like Airgas for welding 02 is promissing. There is one in Miami so I’m gonna read up more on welding o2 

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Quote

 

Hang in there @kat_92!  I could not access medical oxygen s went the welder's route last week through praxair in my neighborhood.  To be honest, when i had all the gear  i wasn't really sure what i was doing with it all. But with a wrench and special adapter that fits the regulator and hose, I'm all set now.  With the exception of a brutal CH last night, i believe it is def helping.  

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@Transcona gal yes the Praxair in my town is permanently closed so I was going to go through Airgas. Can you tell me exactly what sizes you bought, which regulators etc. also, are you chronic or episodic? Are you doing any preventatives at all? Like vit d regimen or anything. 

Kat 

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I'll post about my regulator size and tank when I get home and can access the paperwork. 

I am episodic. This is only my fourth cycle. My first occurred in Feb 2012 and lasted for 6 months. I think it lasted so long because I had no idea what i was dealing with. A friend suggested magic mushrooms. I really didn't think they would work but i was willing to try anything at that point. To my amazement, they worked and CH went away within the next week. I've had 2 cycles since then that i treated with mushrooms successfully. 

This cycle is more persistent. It began Aug 2 at 3:30. The first 6 weeks were horrendous. I was prescribed a few meds but they were not helpful. I have also been taking mushrooms almost weekly since the cycle started with the exception of skipping 2 weeks. After reading here about the mushroom "schedule" I've recently switched it up a bit so i am taking them every 5 days now. I'll be dosing later tonight to stay on track. They have helped me the most. The mushrooms  have decreased the frequency, severity and length of the attacks. For me, I'm just not sure why the mushrooms are no longer working to make it go away completely. I know i'm just a few weeks in to the cycle but I am wondering if this means I'm going chronic now. And that worries me. 

I'm taking the vit 3 regimen for 2.5 solid weeks now but I really do not notice any change from that. I've stopped all prescribed meds, I have ordered the rivera seeds and am waiting for those to arrive but have not tried them yet. 

When Emgality becomes available in Canada I will get it as soon as i can. 

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Update: I found a medical o2 supply that provides the tank and refills and delivers them to the house for you. $156 deposit and 78$ any time you need a new tank. There is no monthly fee. It’s an M tank size. The guy said with a regulator delivering 15 lpm it should give you 3 hours of time. I’ll have to experiment and see if that’s true or not. What are the opinions on demand valves? It seems to me like they are totally worth it but they are on the pricy side. Thoughts? 

Hoping everyone has pain free days ahead. Positive news is positive news no matter how small! 

Kat

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I'm getting O2 on a federal program. They are charging the government $36 per M tank. I use a M tank every 10-14 days as I am chronic. I usually hyperventilate O2 for 15 minutes per cluster.

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kat', closer to four hours, I would think.  An M tank holds about 3500 liters.  3500/15 = ~230 minutes of O2.  But some people do find that when the tank gets lower in O2, the abort is less effective.  I've already given you my view about demand valves: nice, but not necessary and expensive, and won't save you any significant O2.

You will probably also want a smaller tank, an E tank, for portability (car/work, etc.).

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That is good that you now have a company that will supply you with oxygen.  Now it is time to start playing the game with them to get more then the one tank. I have found that the person who delivers the tank it more sympathetic and will most likely hand you a extra tank from time to time. Start out trying to collect e tanks, they are smaller amd nice to keep in the car with you. You will want more then one tank so they do not need to come to your house as often for delivers.  With only one tank you will need to plan well so you do not run out over a weekend and be stuck with no o2. As far as billing goes my local company is a flat monthly rate for up to 3 delivers so they do not charge per tank. I call and order tanks when I have a few empties and always add a extra. Most times I will use another tank before they deliver. 

Bottom line is get to know your delivery person and figure out how to work the system to your advantage.  You do need this and they should not make it so hard. For me paying out of pocket was much cheaper then using insurance. 

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On 9/29/2019 at 4:32 PM, kat_92 said:

@spiny I think I’m going to go the welding route. I’m having the hardest time finding a Medical supply store that carries tanks in my area 

 

On 9/30/2019 at 2:23 PM, kat_92 said:

Update: I found a medical o2 supply that provides the tank and refills and delivers them to the house for you. $156 deposit and 78$ any time you need a new tank. There is no monthly fee. It’s an M tank size. The guy said with a regulator delivering 15 lpm it should give you 3 hours of time. I’ll have to experiment and see if that’s true or not. What are the opinions on demand valves? It seems to me like they are totally worth it but they are on the pricy side. Thoughts? 

Hoping everyone has pain free days ahead. Positive news is positive news no matter how small! 

Kat

SW Florida experienced will PM

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