Overwhelmed Newbie with Questions

[Junebug999]

Hi there. I've been reading/lurking for a bit. I had my SPG on 9/6 and will get the results on doc appointment on thurs. a.m. I have been exhausted for years. Had 2 sleep studies in 2002 that said I didn't have osa's but was waking up alot from snoring. Surgery was recommended. Surgeon said no, surgery wouldn't help me, it would just come back. So surgeon sent note to my doc that said I should lose weight or have cpap. I did lose some weight (20 lbs) but was always complaining about exhaustion and dumb doc did not even ever bring up cpap. I only found out about CPAP recommendation in august when I got a copy of my records (dumb doc is not dumb retired -- excuse me, I love docs, but am frustrated). So in March of 2009 I aspirated in the middle of night into my lungs and had pneumonia. This in July this year I aspirated again, lucklily didn't haven't pneumonia this time, just sore throat and bad sinus stuff. Anyway, new doc sent me to sleep doc who had this study done. I have questions. I have read the newbie stuff --- but still have questions.

1. what kind of machine to i want? and how do i get the doc to prescribe what i want....and how do i get the insurance company to pay for it.

1.a what list of questions do I need to ask the doc thursday morning?

2. why does the process seem so slow? i want to be fixed now.

3. I'm close to not being able to work I'm so tired. If there is any break in time for the cpap, i'll probably sleep less even than i am now? I can't work then until this gets better. There are days now I won't even drive a car I'm so tired. I get left sided pain from stress even. On 9-6 I hadn't slept hardly for 3 days prior and my BP's were all 160/80.....usually i'm 120/80 .

4. i have a very stuffy nose. so if i have a machine where i breathe in my mouth, how do i breathe out if air is blowing in?

5......hmmmmmm i have a bit of anxiety going don't i. I haven't slept hardly this weekend again, and I'm exhausted. I feel about at the end of my rope....

thanks for listening.....this has to get better.

I want a nice machine....i'm overwhelmed about machines...masks....bleah...oh....i'm not a candidate for the mouth appliance due to TMJ problems...i'm asymptomatic with the TMJ right now, but no one wants to mess with that afraid that then i'll have TMJ pain.

bleah.....i'm very thankful for this website though....you'all are so knowledgeable. I've learned a lot just from listening to you...

[Emilia]

Hi Junebug, and welcome to the forum! You are having quite a time of it, aren't you? The good news is that you will soon have some answers!

Before you go to the doc on Thursday:
1. Call your insurance company and ask them what your coverage is for cpap equipment. Do you have a deductible to meet? Do you have a co-pay? Will they cover your machine completely or will you have a copay on that? Do they purchase the machine or do a rental contract with the DME for it? What type of machine does your insurance cover? Will they provide you with all your supplies -- mask, filters, hose, mask parts on a timely basis? You need to do the math on all this. If, for example, they do a rental contract and you have a co-pay on that, you may wind up spending more in the long run than if you just bought your own machine. Being prepared with this information will help you to navigate the wonderful <---sarcasm world of health insurance!

When you go to the doc's office on Thursday:

1. Be sure to get a copy of the full report of your study (5-8 pages).

2. If your insurance is paying for the machine and will cover whatever the doctor Rx's.... then have him specifically write out your Rx for a fully data-cpapble auto cpap machine with "Dispense as Written" on it. Fully data capable means it will give all data regarding pressure, AHI, leaks etc. Not to be confused with compliance data that only shows you turned on and used the machine.

3. Be sure to get a copy of your Rx if the doc's office is sending it to the DME for you. It is important to have your own copy of the Rx for your machine and mask in case you need to buy extras, backup or have an emergency while traveling.

This should get you started....others with more advice will be along soon, I am sure! Best of luck.... it will get better! I am 3 weeks into my therapy, and it getting better every day.

[dtsm]

Emilla has already given you some solid advice and pointers. Just a few other thoughts:

1. try to find a good DME - many here complain about their DME and the service; fortunately I have a good one so I know they do exist!
2. you've found the right place, once you get started, you'll have more questions and we're here to help.
3. this is a marathon; don't expect instant gratification. some folks get acclimated to the mask and machine quickly; other's struggle for a few weeks or more before they get it right. and we're always tweaking things.

good luck

[sweetsleeper]

I too was overwhelmed at the beginning and "stuck my head in the sand" not researching and questioning as I should have. Good for you for doing so. I happen to have lucked out and had a good adjustment to CPAP therapy. For mouth breathing you probably need a full face mask. I too have TMJ and read somewhere that using chin straps that go with nasal masks are contraindicated with TMJ. Because of mouth breathing from sinus problems and the TMJ I use a FFM. Personally I'm fine with the FFM but it all took a while to get used to. Ask your doctor for copies of your sleep study and titration study. Keep asking questions. Best of luck.

[Junebug999]

Thanks for the great responses. I'll call insujrance tomorrow. But first I'll check with some CPAP users at work to see what inside info they might have about DME's locally or dealing with our insurance company.

Since I found out this summer that CPAP was recommended in 2002 but my doc didn't follow up, I now get a copy of ALL tests and records medically.....I've lost my naivete that they are looking out for what I need....I know they are busy and hassled at times, of course. I have friends in the medical field who are very dedicated to their patientes....but i just get copies anyway....good point about getting copy of RX though....for travel, etc....best to have it and not need it than trying to get someone to cooperate with you on some holiday weekend when you're in another city.

[TmjTerri]

I am somewhat new to cpap therapy. I was disgnosed as having severe complex sleep apnea so surgery would not work for me either. In 2002 I had to have a bilateral total joint replacment on my jaw/tmj so I understand how you feel in regards to that. To this day I have been unlucky in getting used to my vpap st machine as I hate the mask and just the feeling of the whole thing. To be truthful, I really do not use my machine and I have gotten alot of flack because of that, so I know I need to use it and I need to get used to it. I just wanted to stop by and let you know that you are not alone and good luck with your doctors appointment on thursday. Make sure you get a copy of your reports!! Since Dec. 2010 I had to have 4 sleep studies in a row because my case is so severe. Once again, I know I need to use my machine and that is why I am on this forum to ask questions get support and find ways to accept my condition and adjust to therapy. Good luck!!

[LoQ]

3. I'm close to not being able to work I'm so tired. If there is any break in time for the cpap, i'll probably sleep less even than i am now?

You might, but it should be more restorative sleep, which will be a benefit. In any event, you have to get adapted to it in order to feel better. The more you put off the adaptation, the longer it will take.

In the meantime, until you get a machine, maybe you should consider sleeping in a recliner. Some people have relief from apnea by sleeping on their stomachs. I find that hard to do, but if it's easy for you, you might give it a try.

4. i have a very stuffy nose. so if i have a machine where i breathe in my mouth, how do i breathe out if air is blowing in?

The mask controls whether you are breathing through your mouth or nose. You probably need to use a full-face mask (FFM). It sounds like it would be hard to breathe out with air blowing in--that was one of my first questions. But it turns out that unless your pressure is really high, you can easily exhale. If your pressure is high, then you normally will get a machine that reduces the pressure when you exhale. Please don't worry about this.

[cflame1]

Terri and Junebug... I've got TMJ as well... have had it for years (no joints replaced though). I stay away from chinstraps... usually I'm using a FFM/Hybrid and a bite guard that's been fitted to me by my dentist.

[Junebug999]

thank you tmjerri and loq....i'll do that....and tmjerri...i can't tell you to use your machine because it works for me.....but i'd encourage you to keep trying....i've heard it's hard to get used to, but when i think about other things i've learned to get used to...i've done that so i'll work on this too. hang in there!

[tony72]

my pressure is 17 and it took me a week to get use to it,i no longer use the ramp feature.