new to sleep apnea

[Hea83ther]

Hello-

I was recently diagnosed with fibromyalgia, mild sleep apnea, UARS, restless legs syndrome, and PLMD. In addition, I have a seizure disorder that is under control with medication.

This past week I went to a new neurologist/sleep specialist to obtain a second opinion regarding disorders diagnosed by my last neurologist (UARS, restless legs, narcolepsy). They performed a baseline overnight study, and found the apnea and PLMD, which mostly occurred . They also said I had one less REM cycle than most people, and that my REM cycles were half the length of most people's. I went back for a second night for CPAP titration. They said the apnea and UARS were easily controlled at a low pressure. I tried three masks throughout the course of the night, and the full face was the best. I am only 28, and have lost fifty pounds in the past year, so I was a little surprised about the apnea.

The doctor took me off of two antidepresants (used off-label for migraine/RLS), because he said they were negatively affecting my sleep architecture.

The DME called me today to set up an appt. after receiving my Dr.'s prescription. When I asked what the cost would be, they told me $680 out-of-pocket for machine, mask, hose, and three months worth of equipment. I'm fully insured through Highmark Blue Cross Blue Shield. $475 of the $680 is my yearly deductible, and then I have to pay 20% after that. I know I need treatment, but I cannot afford this. They finally agreed to let me pay it down over ten months, but this seems excessive to me. Is this normal?

Any other tips/advice regarding new mask users would be appreciated. The air pressure didn't bother me at the lab (actually felt good), but the nose pillows and the nose mask hurt so bad that I was in tears. The full face was comfortable enough that I fell asleep, but it still wasn't great. I'm very sensitive (can't even wear ear plugs), so I'm a little nervous.

[MaxDarkside]

Hi Heather,

I'm new to this too. I've been on my machine for 7 weeks. You will get a lot of help here. The people are WONDERFUL. Use whatever mask is most comfortable for you.

As an encouragement, I was in rather bad shape starting into this, medically. Look at my signature in the lower left of this post. THE ENCOURAGING PART: I think I will be better off, in the end, with this treatment than most people who do not have the condition! By that, I mean, I will be healthier than a normal person! I am so encouraged with my progress.

It will take time. Learn, listen, you will get a lot of good advice about machines and such.

Yes, the machines are spendy, but you also want a good machine. Try not to cut corners on your health and well being if you can. I have a ResMed S9 Autoset. It's good. Depending on the finances, getting on a payment plan might be good. There's some out there that have very low interest rates.

All the best to you.

[Hea83ther]

Thanks for the encouragement. I've started having heart palpitations during the day during the past year. They think the apnea, even though mild, may be causing this.

[MaxDarkside]

Thanks for the encouragement. I've started having heart palpitations during the day during the past year. They think the apnea, even though mild, may be causing this.

It could be caused by apnea, yes, or so my neurologist suggested. As I got hours sleeping on my machine not only the treatment helped the arrhythmias, they faded away pretty quickly, but I found I really cut down on caffeine and nicotine or other stimulants that kept me functioning during they day, being so sleep deprived and so those stimulants also cause arrhythmias. So, now occasionally, once or twice a week I might feel a little flutter (atrial fib, generally not serious they tell me).

Also, my lung capacity is way better. I can quickly climb up 3 stories, 6 flights of stairs, at 4,000 ft altitude and not even notice. Not bad for a 54 year old That's a nice sensation. Before, it would about cripple me.

You can see my equipment down below. It's a pretty good setup. Others can comment on theirs and recommendations.

Thanks.

[retrodave15]

Welcome, I have found this is one of the best forums on the web.

My mother in law, was in the similar situation, did not want to get hit with a huge out of pocket cost as they have a high deductible plan and was going to have to pay close to $900 for the machine, humidifier and mask. However both use the same DME, which is a non profit DME connected with one of the non profit hospitals in town. They set her up with a reconditioned Respironics System 1 CPAP with humidifier for $350. She had to pay for the new mask, but they let her set up an interest free installment plan to pay for the equipment over several months.

You might check around with several of the hospitals to see if they have their own DME. This one (HomeReach) is connected with Riverside Methodist Hospital in Columbus, OH. They even offered to see if she would qualify for some of their patient assistance programs. Check around to see what is in your area.

[Breathe Jimbo]

Talk to your insurance company about the costs. Make sure the DME is approved by your insurance company. If you have coverage for durable medical equipment, the costs will be limited by the DME's contract with the insurance company. Get your Certificate of Coverage and see what it says. I wouldn't trust the DME alone.

[Hea83ther]

It's a small world. I live in Columbus. I don't know how much aid I would qualify for. I'm single and make a living wage, but my school loans and medical costs are very high.

[retrodave15]

Thanks for the encouragement. I've started having heart palpitations during the day during the past year. They think the apnea, even though mild, may be causing this.

Three days before my first sleep study I ended up in he ER with chestpain and heart palpitations. When I saw the Cardiologist in the hospital the next day after my stress test, which was normal, I asked if I should cancel my sleep study to allow me time to recover. His answer was ABSOLUTELY NOT!!!

I was diagnosed with mild sleep apnea with a high RDI along with RLS and PLMD. I also have depression, cluster headaches, high blood pressure and ADHD. For 41 years old I was a mess. 8 weeks into CPAP I have:
I have not had an episode of chest pain / palpatations since I started CPAP
Cut the number headaches by 75%
My RLS is responding better to Gabapenten
My blood pressure is more manageable - I have halved my dose of Lopressor
My depression and mood is better
I can manage my ADHD (no medication for this)
It is amazing what a good night of sleep can do for you.

I wish you all the luck with your journey into Hoseland

[retrodave15]

Just sent you a PM

[Hea83ther]

I did not realize "mild" apnea could cause so many problems (my oxygen didn't go below 90%), but, from what they told me, it can.

[Pugsy]

The DME called me today to set up an appt. after receiving my Dr.'s prescription. When I asked what the cost would be, they told me $680 out-of-pocket for machine, mask, hose, and three months worth of equipment. I'm fully insured through Highmark Blue Cross Blue Shield. $475 of the $680 is my yearly deductible, and then I have to pay 20% after that. I know I need treatment, but I cannot afford this. They finally agreed to let me pay it down over ten months, but this seems excessive to me. Is this normal?

Find out from the DME which brand machine AND exactly which model machine they are going to offer.
Read this about machines that offer data vs those that only collect compliance usage data (hours of use). http://maskarrayed.wordpress.com/
Masks are very expensive (some more than others) up to $200 online and twice that with a DME sometimes.
Actually considering you are having to deal with deductible now, the out of pocket could be a lot worse.
My concern would be that you are getting a bare bones machine at this price.

[Gaga58]

Just sent you a pm as well Heather!