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My insurance doesn't cover oxygen - any tips?


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I just started hi-flow oxygen treatment for my episodic CH. I was doubtful at first since I tried oxygen years ago and it wasn't very effective. At that time, I think it was low-flow and breathed in through a nasal cannula. This hi-flow (at 15L) through non-rebreather mask is actually working great! It has knocked out virtually all the cluster attacks since I started it. My only challenge now is that it's not covered through my insurance and I am paying for each bottle I use. I'd like to get a higher regulator (25L) since I can't breath in as quickly as I would like and I haven't yet hit my peak cycle, but I know that will mean more oxygen bottles and more $$. Anyone have any tips on getting insurance to agree to cover oxygen?

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Here is the info to help you with the regulator and mask

This regulator will work on E tanks

https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1

This one will work on the M and M60 tanks

https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1
~OR~
wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540

The mask can be found here

http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

 

As far as getting it covered by insurance, I have the issue of it costing way to much with insurance so I called around and told the oxygen companies that I will be paying out of pocket. It seems as if the insurance company actually sets the pricing and when I pay out of pocket the price is about half. I lucked out and have a company that will deliver the tanks to my house. I call in what I need and they come the next day. I am also chronic so I get this done all year round so I am not sure how that would work if I did not call in a order for 6 months of so. 

I recommend calling as many companies as you can and tell them your paying out of pocket. Your other option is the welding route. You can read up on this on the site as well and get all the help you will need for that setup.  

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Thank you so much for your helpful response CHfather!

I live in a small town so I'm not sure how close a welding supply would be but I'll keep that in mind. I've just started trying an energy drink at onset of daytime attack, but try to avoid caffeine at night when most of my attacks hit. During the day I can usually abort with intense exercise - usually on a stationary bike. I've read that exercise is a trigger for some, but for me it has been very effective. So my latest strategy is night time attacks = oxygen, daytime attacks = exercise + energy drink.

What caffeine drink works best for you?

I'm able to abort most attacks at 15L at about 10mins. Are you able to abort them faster with 25L?

I used to able to abort most attacks in about 5min with Sumatriptan injection, but unfortunately due to another health condition/medicine I can no longer use that.

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I use the small 5hr energy drinks or coffee type energy drinks if that is all I have. I can use them all times of day and night and they do not keep me awake. I run my oxygen reg at 25 lpm at first and dial it back as I get the cluster under control. If I catch it fast enough with the O2 I do not tend to need the 5hr drink and can sometimes abort in about 5 minutes. the longer it takes me to get on the oxygen the longer the abort takes. I will also add benadryl to the D3 regimen when things get bad for me you can read all about that on this site and XXX(Batch) will be more then happy to help you along with that. Some have help off cycles all together just by taking vitamins. Holding a ice pack on my cluster side also helps me, I don't know if it just distracts me from the pain or really does something but if it works I will try it

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FunTimes, I haven't tried 5hr energy drinks yet, just some Red Bulls. I don't like they way they taste, but if they help kill the attack… I keep coming across the D3 regimen on the forum so I'll definitely investigate further. I have used ice packs with some success - l think you're right that they can provide some distraction which can be helpful. A hot shower with the spray right on the left side of my head is the best way I know to provide relief for the ones that just won't die. But after about 30-45 minutes even that starts to lose effectiveness. Each cycle I get about 2-3 killer kip 9-10 attacks that nothing can put down.

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I use very strong cold brewed coffee kept in the fridge for mine. I can't take any of the Energy Drinks but V8. 

The D3 Regimen can be a life saver. As I explained to someone once, 'Would you swallow five sips of water for pain relief?' We tend to buck up over taking a fistful of vitamins as some describe them. But for many CHers', the regimen has stopped their cycles completely! I highly recommend that you check into it and do it! All good for you , unlike scripts!! 

ATB!

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On 10/14/2020 at 11:48 AM, Double A said:

What caffeine drink works best for you?

I'm able to abort most attacks at 15L at about 10mins. Are you able to abort them faster with 25L?

I used to able to abort most attacks in about 5min with Sumatriptan injection, but unfortunately due to another health condition/medicine I can no longer use that.

The nice thing about 5-Hour Energy is that it packs a lot of caffeine (twice as much as a RedBull) but can be chugged down quickly.  Plain strong coffee is enough for some people (keep it ready in the fridge).

10 minutes is a reasonably quick abort.  Caffeine and/or the special mask (ClusterO2 Kit) will probably speed that up.  You might not get a whole lot faster abort with 25lpm, but you had said that 15lpm didn't really keep pace with your breathing, so it seems reasonable to think that if you can breathe at your most effective pace, you could cut off some additional time.

Is it that you now can't use any triptan, or just that you can't take as much as the Imitrex injector (6mg)?  It's always good for anyone to stay away from the triptans as much as possible, but you might want to be aware that 2mg of sumatriptan is enough to stop attacks for most people, and there are ways of using only that much. For example ... https://clusterbusters.org/forums/topic/2446-extending-imitrex/

There are a few additional ways of dealing with an attack in this post, under "Other 'Treatments'...."  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   Also some info there about the D3 regimen, which as others have said is very much worth pursuing.

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Such great feedback CHFather, Spiny, and FunTimes! Thank you so much!

19 hours ago, spiny said:

The D3 Regimen can be a life saver. As I explained to someone once, 'Would you swallow five sips of water for pain relief?' We tend to buck up over taking a fistful of vitamins as some describe them. But for many CHers', the regimen has stopped their cycles completely! I highly recommend that you check into it and do it! All good for you , unlike scripts!! 

I am definitely looking into this. I had already been taking increased daily vitamins this cycle and trying to amp up my dietary Magnesium intake, but didn't know about this laser-focused regimen until you guys mentioned it.

 

14 hours ago, CHfather said:

10 minutes is a reasonably quick abort.  Caffeine and/or the special mask (ClusterO2 Kit) will probably speed that up.  You might not get a whole lot faster abort with 25lpm, but you had said that 15lpm didn't really keep pace with your breathing, so it seems reasonable to think that if you can breathe at your most effective pace, you could cut off some additional time.

I already ordered a ClusterO2 Kit and started using it three days ago - so much better than the crappy stuff they gave me at the medical supplier - a hi flow cannula and a pediatric face mask (they didn't have any adult ones in the store). I also ordered a 25lpm regulator from Amazon and waiting for it to come in. I plan on getting some 5-Hour Energy and see if it's helpful for me.

14 hours ago, CHfather said:

Is it that you now can't use any triptan, or just that you can't take as much as the Imitrex injector (6mg)?  It's always good for anyone to stay away from the triptans as much as possible, but you might want to be aware that 2mg of sumatriptan is enough to stop attacks for most people, and there are ways of using only that much. For example ... https://clusterbusters.org/forums/topic/2446-extending-imitrex/

 

I suffered a stroke last year and have been on meds to prevent arrythmias (Atrial Flutter) that are related to surgery I had as a child to repair a congenital heart defect. Since the stroke, and the addition of blood thinner meds, the neurologist told me I couldn't take Imitrex any longer and prescribed 100% hi-flow oxygen as my abortive. I didn't ask about other triptans. I have tried ergatomine, lithium, and prednisone in the past. Only the prednisone seemed to help. 

I actually called the neurologist office yesterday and asked them if they could prescribe some prednisone to try again. They actually did it without needing to see me in the office. I was stunned! Even better, I started the prednisone and no attacks last night!!! The oxygen has been great as an abortive, but sleep deprivation has been really rough as my cycle in getting into the red zone. I was getting up 3-4 times to fight off the beast. Around 12am, 2am, 4am, 6am seem to be the times they like to hit me the most. Of course prednisone is only for a few days, but I have increased Melatonin to 20mg to see if it will help reduce night time attacks also.

Hopeful!

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I have found the prednisone will only help you when you are taking it, you stop taking is and clusters are back. That is given to bridge the gap when starting a new med like verapamil, it gives it the time needed to build in your system. But hey if it gets you a few days pain free and you have no issues taking it rock on.. I would do the same.  Oxygen will be your best option to abort any attacks you get and the 5hr drinks can help that along if you get a stubborn one. I have tried the melatonin but have not come up with any set in stone results. The D3 did make a difference for me in the intensity and frequency of my attacks. 

We are all in the same boat here but everyone is a little different in the way we react to treatments so don't give up on any one thing because it is not working sometimes you will need to tweak it just a little for better results. Breathing technique that worked for you today may not work tomorrow so just be ready to change things up a little from time to time.  

How are you making out getting a better price on the oxygen? if you are ok with sharing your general location others in your area may be able to give you companies they had luck with people from all over the globe stop by here to help each other out. 

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Pred usually does buy you that pain free time. Until you taper it down! It would be a great time to start the D3 Regimen. It takes a week or three to work, but is very worth it! Adding the Benadryl is very helpful thing for many taking it too.

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On 10/16/2020 at 12:21 PM, FunTimes said:

How are you making out getting a better price on the oxygen? if you are ok with sharing your general location others in your area may be able to give you companies they had luck with people from all over the globe stop by here to help each other out. 

I'm in Beaufort, SC - between Hilton Head and Charleston, SC. I'm getting oxygen from Resource Medical Supply Group https://resourcemedicalgroup.com/ who have multiple locations in SC and one in Savannah GA. By paying out-of-pocket, its $10 per E (M24) tank (680L), and they just got me an M122 tank (3455L) for $25. So the bigger tank is quite a bit less. I haven't finished my cycle so I'm not sure how much I will be spending. As long as they can keep my on the larger tank for most needs, I think it will be pretty reasonable. By comparison, they told me it would be $100/month for oxygen delivery service if it were covered by insurance. The store is only 3 miles from my house, so the proximity makes it very easy to get to for me. My focus right now is to make sure I can get sufficient oxygen from a steady supplier. They only had a 8L regulator for the large tank, so I will order one of my own.
So I'm trying to get both sizes of tanks, and 25L regulators for both sizes.

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  • 3 weeks later...

Thought I'd provide an update - you all have really helped me with this cycle! I was really dreading it since I was no longer able to use the Imitrex, but with your help I've learned how to use oxygen effectively and can now get it at reasonable price and not worry about rationing it or running out. I got the large tank rigged up with Batch's Redneck Reservoir Bag and haven't needed to buy the 25L regulator for it. I also started the D3 Regimen about 12 days ago and it's helped to dramatically reduce frequency. Only getting about 1/day about 6:30am which is easily knocked out with the O2. It's so good to be able to sleep through the night. Hoping soon to be pain free.

Thank you all for the help you give others.

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