Newbie - Issues Getting Oxygen Prescription Filled

[Mordecai]

Hi All, I feel for every one of you and am so grateful I found this forum.

Back story, I am a 41 year old male and started getting CH as far back as high school. At that time I thought it was glasses as I couldn’t see well, and then through my late teens and 20s I thought it was due to dental issues, but they still came back. When I finally had good insurance (around 2008), I had talk to my PCP and he diagnosed me with Episodic CH. I usually get them in spring or fall and sometimes summer or winter. I was prescribed sumatriptan nasal sprays which usually work for me in 15mins, but it seems to give me rebounds, so I only use them in emergency situations. I usually suffer though the attacks and would chug 8oz of water every 30 mins, which makes it hard to go places. I found MM on accident helps.
 

Since I found this site, I’ve been reading through the different abortive methods and finally went to my doctor to ask about the D3 regimen, which he said he could not get behind because it’s toxic levels. he is referring me to a neurologist ( I had a cat scan back in 2020 to rule out brain tumor). Im hoping the neurologist will be able to help me with the D3 regimen, but we’ll see. I was able to get my PCP to prescribe O2 (I had to ask and he prescribed two 3gal tanks), which I picked up yesterday from a local home medical supply company and they let me pay out of pocket until insurance was ran. And man oh man that was the fastest relief I’ve ever experienced! My only problem is, the medical supply store calls and tells me insurance won’t cover it since it’s for CH and they don’t accept out of pocket payments??? WTF! I called the only other medical supply store and they asked what the prescription was and told me the same thing insurance won’t cover so I can fill your prescription. So I get emotional from finally getting O2 and then sadness when they take it way a day later…. They are letting me keep until Monday at least.

Does anyone know how to get past this? I had the doctor right me the prescription again. So I picked it up, but don’t know who to call or how to word it to them. I called insurance company and they weren’t the most helpful. It really sucks to have this right in my fingers, but can’t get it filled.  I don’t mind paying out of pocket, I use my HSA anyway, but just reaching out to the community. 
 

Thanks,

Mordecai

[FunTimes]

I have come across the same issues in the past. I am not sure what country you are in, Here in the US I keep on calling and climbing the latter going from one level a=of management to the next until I find someone who understands that money is money and it does not matter who is paying as long as they are getting paid for the services they are trying to provide. I also pay out of pocket and it is actually cheaper for me. I pay a monthly fee for the home delivery service and I pay that regardless if I get oxygen. That covers 4 M60 tanks. I can order more and pay a different rate depending on the size tank I order above the 4 M60's. Smaller Mom and Pop type shops I find get the same tanks from the larger distributers and usually only get one order a week so they don't like Clusterheads cleaning them out every week so go direct to the larger supply house and deal with them direct. Be extra nice to the delivery person bringing the tanks and you will be able to get extra tanks from them on occasion if they have them on the truck. Stock up on as many extra tanks as you can store for when something goes sideways. Don't accept the "we don't serve cluster headache people" What do they care what it is used for, they are selling it and we are paying for it. The Market down the street does not care how much milk you buy why would the oxygen people care how much O2 your getting as long as you pay the price they are asking.  This makes me nuts how they think they can just say no because we use more oxygen at times than others. Your other option would be to get welding oxygen and use that, but do not tell that supplier you will be breathing it. We can help you get set up with that equipment if you do decide to give it a try. 

[Mordecai]

Thanks for the reply. I’m in Virginia and the area I’m in only has two suppliers and the one manager I’ve spoken to this afternoon tells me we don’t supply oxygen to cluster headache patients…I ask why?!? … and get the same response the next 5 times I ask Why? I’m politely asking the why and finally asked for the next manager, which I’m sure I’ll be asking for again tomorrow. I’ll continue exhausting this company and then go to the other. My PCP has a neurologist calling me to schedule an appointment so I’ll talk to them about this too, but first think I’m asking them before scheduling is making sure there is actually someone knowledgeable with CHs before scheduling, b/c I saw on this site we have CH specialists in Alexandria, Woodbridge, Charlottesville (UVA), VA Beach. I’d rather try and work with someone who knows about them than someone who just “knows ‘about’ them.”

I've also read some people getting relief from 10lpm concentrators, which I’m willing to try if I can’t get O2…not sure about the welding supply stores yet….but that’s also an option, Im just afraid of the contaminants in it …

 

Thanks again!

[FunTimes]

@Mordecai Give this place a try https://adapthealth.com/locations/  see if you can get to a guy named Ed Pucket. He is located in Northern Maryland and may be able to get you what you need. Best of luck to ya! 

[Mordecai]

Thank you so much, FunTimes! AdaptHealth is who I’m currently trying to climb the ladder with :praise: 

 

 

[CHfather]

I remember @jon019 saying that his doctor gave him a certificate of medical necessity, or something like that, which helped clear the path with insurance.

13 hours ago, Mordecai said:

not sure about the welding supply stores yet….but that’s also an option, Im just afraid of the contaminants in it …

So the argument here is that contaminants will mess up a welding job and so suppliers are not going to let those tanks have anything but pure O2 in them.  The second argument is that people here have been using welding O2 for ten, fifteen years or more without issues.

13 hours ago, Mordecai said:

one manager I’ve spoken to this afternoon tells me we don’t supply oxygen to cluster headache patients…I ask why?!? … and get the same response the next 5 times I ask Why?

It's not clear to me what the answer was, but if it was just "we don’t supply oxygen to cluster headache patients" and not the insurance thing, it could be that you were reaching someone on the industrial gas (welding) side rather than the medical side.  The first time I tried to get welding O2, at a place in Northern Virginia, that's what I was told.  So you learn not to ask for it in that way.

13 hours ago, Mordecai said:

Alexandria

15 years ago, we got medical O2 in D.C. from Lincare. No insurance hassles, but it did require some educating about what a person with CH needs. Of course, I don't know what things are like today.

[Mordecai]

Thank you both! After talking with the manager and requesting a call the branch manager of AdaptHealth, I received a call yesterday from the manager of the local medical supply company I initially worked with to get my O2 tanks. She said she received the emails from the corporate managers giving me a hard time about insurance not covering it, yada, yada and said she does not care that I pay out of pocket with my HSA! She apologized for the corporate folks and said, “you put my # in your phone and deal with me only!” I was so frigging relieved and joyous in that moment! I now have two E tanks that I can keep swapping out and will eventually get a travel tank and purchase the better mask from clusterheadaches.com 

Thanks again! 

[CHfather]

good for you!!!!!!!!!!!    but to the extent you can, keep pushing for a big tank -- an M tank, or an H tank.  they ought to have them, and it'll save them a lot of trouble if you have one.  aside from e tanks being small, it is not unusual for the effectiveness of O2 to go down when the amount of O2 in the tank reaches some level -- half full; one-third full -- so you can be getting less useful O2 than the tank holds.  You're going to be calling them a lot (as i think others have mentioned, the O2 delivery person should be your new best friend, and you might get some extra or bigger tanks from them).  

i'm not sure what a "travel tank" would be, but anything smaller than an e is hardly worth it.  e is plenty portable.

with your current mask, block the open holes on the front of the mask with tape, or with your thumb as you inhale, so you're keeping room air out.  cut the strap -- you don't want to fall asleep with the mask on your face.  press firmly to your face so there are no leaks.

normally, the recommendation is to stay on the O2 for some time after the attack has been stopped, so that you might prevent subsequent attacks.  five minutes, some say; others say for roughly as long as it took you to stop the attack.  many people turn down the regulator as they do this. you should do this, but with an e tank you hate seeing the tank contents go down. 

[FunTimes]

This is a great start! now just like CHfather said, work on getting bigger tanks. M60 and M tanks are good home use tanks and E is the travel size for me. Take care of your delivery driver when you can, bottle of water/cup of coffee. Maybe a snack from time to time? Whatever it takes to have them pulling for you. I have had drivers call me before they leave the building saying they did not have my tank size and adjusted from one M60 tank to 3 e size tanks. Pay your bill on time every time and you should be good to go. Cluster mask will also make a big difference in your abort experience. After the O2 is all in place start stocking up on a few other abort techniques. Mix and match them and your on your way to a happy cluster life!