New person- with LOTS of questions!

[ciounoi]

Hi there-

I was diagnosed with OSA just a few weeks ago. I originally went to the sleep clinic because I would actually stop breathing BEFORE I fell asleep, and that was keeping me up all night. I have mild/moderate OSA (15.1 episodes per hour), and would love to get my bipap and start sleeping better!

However, I have a number of questions and one big dilemma. The dilemma first.

Up until July 31st, I was on my parents' health insurance plan, since I am still a college student. However, since I turned 23 last month, I became ineligible for the plan and am now on the student health insurance plan, which states explicitly that it does not cover treatment, diagnosis, or supplies for sleep disorders. Luckily, I got most of my diagnostics and sleep studies out of the way in June/July, however, I am now pretty much in insurance limbo. I originally thought that I needed a CPAP and was willing to pay out of pocket for it (they have a very basic 300 dollars model). However, after the sleep study I was told that I need a bipap model- which will cost over 3000 dollars, including mask and supplies. As stated before, my insurance will not cover this. If I find a new insurance plan to cover it, I'm sure that there will be some kind of pre-existing conditions statute. Does anyone have any advice as to what to do in this situation? I live in PA, if that is a help.

My doctor said that my apnea is moderate, but it only JUST squeaked by from the mild range. I am definately sleepy during the day, but nothing extreme. My main problem is that I get sleepy very early in the evening- I'm ready for bed by 8 PM, although I never actually go to sleep at that point.

In the meantime while I wait for a bipap (and that might be a long wait!), does anyone have any suggestions to be better rested? One question I did not ask the doctor was if more sleep with apnea is better than less sleep... I know either way I won't be sleeping well, but would I feel any more rested with 10 hours of sleep as opposed to 8 hours? Are there any environmental changes I could make, perhaps something like a makeshift CPAP machine? I sleep with a floor fan next to my bed, and I have found that if I adjust the fan so that the air hits right below my neck I seem to sleep a bit better.

Lastly, four general questions!

1) I am a habitual mouth breather. I sleep with my mouth open, and if I don't catch myself I breathe with my mouth open during the day, as well. This poses an obvious problem with the masks- I'm worried what will happen if I choose a nose-only mask. (When I did the sleep study I FINALLY fell asleep with a nose mask and a chin strap.) Does anybody else deal with this? What do you do?

2) IS this curable? Judging from just my sleepiness level, the apnea isn't too bad (I don't fall asleep at random times, not excessively sleepy, the one thing that's really noticeable about me is that I'm ready for bed by early evening).

3) When I wore the nose mask without the chin strap, I accidentally breathed through my mouth several times, and it is the most unpleasant thing ever! Is it bad to have the air going through your respiratory system like that? Will I get used to the feeling? If I get used to breathing through my nose, will I generally not have to deal with it?

4) Sometimes when I have a bad night with the breathing problems waking me up before I'm fully asleep, I wake up the next morning and my arms and legs are tingly. They feel like I am excited or nervous, but it doesn't go away. Kind of like my arms and legs are on full alert, haha.

Thanks for the help!

[Slinky]

... However, since I turned 23 last month, I became ineligible for the plan and am now on the student health insurance plan, which states explicitly that it does not cover treatment, diagnosis, or supplies for sleep disorders. Luckily, I got most of my diagnostics and sleep studies out of the way in June/July, however, I am now pretty much in insurance limbo. I originally thought that I needed a CPAP and was willing to pay out of pocket for it (they have a very basic 300 dollars model). However, after the sleep study I was told that I need a bipap model- which will cost over 3000 dollars, including mask and supplies. ...

Nothing like posing the most difficult question first!!! Since you have no insurance, approach each and every local DME supplier and see what kind of price and bi-level they offer you since you have to pay out of pocket. Once they know you have no insurance and have to pay out of pocket they will often offer you a very reasonable price. Some places can refer you to a supplier who refurbishes and sells used but refurbished xPAPs. Check the various bi-levels at cpap.com, then call and ask about any "unadvertised sale price" on the various bi-levels. Look A.W.A.K.E up on a websearch and contact the nearest as they can often provide advice and assistance in obtaining xPAPs for the uninsured.

... Are there any environmental changes I could make, perhaps something like a makeshift CPAP machine? ...

Often sleeping in a recliner will help to reduce apneas and hypopneas. Not eliminate them all but at least reduce the number of them.

... 1) I am a habitual mouth breather. I sleep with my mouth open, and if I don't catch myself I breathe with my mouth open during the day, as well. This poses an obvious problem with the masks- I'm worried what will happen if I choose a nose-only mask. (When I did the sleep study I FINALLY fell asleep with a nose mask and a chin strap.) Does anybody else deal with this? What do you do?

We use a full face mask. Or our own home-made chin straps from the leg of old panty hose tights or tape our mouths shut.

... 2) IS this curable? ...

Nope, unfortunately there is no cure for sleep apnea, just therapy, the xPAP.

... 3) When I wore the nose mask without the chin strap, I accidentally breathed through my mouth several times, and it is the most unpleasant thing ever! Is it bad to have the air going through your respiratory system like that? ...

If it is escaping thru your open mouth, that therapeutic air is NOT going into your respiratory system. Its totally wasted therapy.

... 4) Sometimes when I have a bad night with the breathing problems waking me up before I'm fully asleep, I wake up the next morning and my arms and legs are tingly. They feel like I am excited or nervous, but it doesn't go away. Kind of like my arms and legs are on full alert ...

Most likely due to insufficient circulation of oxygen to your extremeties.

Given your situation I would WRITE to the sleep lab/doctor and request a copy of 1] the doctor's dictated results (usually 1-2 pages each) 2] the full scored data summary w/condensed graphs (usually 5+ pages each) for BOTH your sleep evaluation AND your titration studies AND 3] your equipment order (script). You are going to need them as you shop for your equipment. KEEP THE ORIGINAL SCRIPT for your records (along w/the original reports) and only provide copies to wherever you get your equipment.

Good luck and God bless.

[mellabella]

I've been watching for bilevels myself (I'm also in insurance limbo due to my diagnosis), and they often sell for $300-500 on http://www.cpapauction.com. Another site for used bilevels is http://www.secondwindcpap.com.

If you're an obligate mouth breather at night and don't want a full face mask, you might want to look into something like the Hybrid mask instead--it's nasal pillows, with a mouth pillow combined.

[ciounoi]

Quick edit- I live in PA, and I asked the dr if I would be able to get the equipment secondhand. He essentially said this was illegal (at least in PA). Any comments?

[mellabella]

Quick edit- I live in PA, and I asked the dr if I would be able to get the equipment secondhand. He essentially said this was illegal (at least in PA). Any comments?

As long as you have a doc's prescription on file you can produce, you can buy online at the secondhand sites I listed.

[MsPiccolo]

Check out some of the online stores like cpap.com. Be sure to call their for their actually price not the required listing price.

[ciounoi]

How would I program a BIPAP machine by myself, though?

[MsPiccolo]

You would need to send your prescription to the online store and they would program your settings before sending it to you.

[mellabella]

How would I program a BIPAP machine by myself, though?

At many places you'll also get the providers manual, which will let you know how to access those settings. Or you can ask us.

Your prescription is part of your health records and your doc will release it to you.

Just out of curiosity, did he mention why you needed a BiPap, without trying CPAP first?

[ciounoi]

Just out of curiosity, did he mention why you needed a BiPap, without trying CPAP first?

Apparently during the sleep study they tried both and I responded much better to bipap. At least that's what they tell me.

[mellabella]

Just out of curiosity, did he mention why you needed a BiPap, without trying CPAP first?

Apparently during the sleep study they tried both and I responded much better to bipap. At least that's what they tell me.

Sounds like you have a very thorough doctor!

[ciounoi]

Sounds like you have a very thorough doctor!

I hope so!


I just thought of something- I asked the dr if I could get the equipment secondhand, but that was when I had insurance... is the illegality that he is referring to the combination of insurance constraints with insurance-unfriendly secondhand equipment?

[mellabella]

Sounds like you have a very thorough doctor!

I hope so!


I just thought of something- I asked the dr if I could get the equipment secondhand, but that was when I had insurance... is the illegality that he is referring to the combination of insurance constraints with insurance-unfriendly secondhand equipment?

That sounds about right....I don't think you can get an insurer to reimburse you for secondhand medical equipment. Once you're one of us self-payers, though, all bets are off as to what you can buy! http://www.cpapauction.com is also a great place to buy masks to try out ($35-70, instead of $100+) if you're having problems and need to try 3 or 4 or 5 to get the right one.

[alnhwrd]

Quick edit- I live in PA, and I asked the dr if I would be able to get the equipment secondhand. He essentially said this was illegal (at least in PA). Any comments?

Its not illegal for you to buy a CPAP or BiPap secondhand. It is illegal for a medical equipment retailer to SELL you one without a prescription, this is why CPAP.com requires one for them to sell you a machine. Private parties are a different matter, but as always, the consumer must beware. Masks, filters hoses and other supplies do not require a prescription.

Here is a link to cpap.com's FAQ section. Click on the "machines" and "prescriptions" section, or just browse for info. Best of luck to you.

[ciounoi]

Thank you for the information!