Newbie - anyone gone through American Sleep Apnea Assoc?

Hi all,

Apologies in advance for the long post -- this is my first one! I was diagnosed with sleep apnea this January after probably 20 years of feeling exhausted all the time. I don't know exactly when the apnea started but I knew something was up when I started having night terrors recently at the age of 45 -- had some expressly horrific episodes where I would shoot straight up in bed and SWEAR that there was something in my room and it was going to kill me. Those nights would end with me fleeing my bdrm and camping on the couch for the rest of the night, all lights blazing and the TV on. I didn't connect those episodes to sleep apnea but I went in to see my cardiologist for routine exam and I explained to him the extreme fatigue and his response "uuuuh---you might have sleep apnea. let's get a test done." So off I went.

Sleep study was done at sleep center and results were:

Mild Obstructive Sleep apnea/Hypopnea
AHI (for entire baseline study): 5 per hr
AHI (during REM) 14 per hr
Lowest SPO2: 85% (does this number reference oxygen level?)

I received a summary report from my pulmonologist (he and my cardiologist share the same office), although sleep center was done at another facility. The sleep center was supposed to send me report and they never did which is why I got copy from pulmonologist. I also ended up doing my follow-up visit from sleep study with my pulmonlogist because I couldn't get an appt with the sleep doctor. I was throughly unhappy with them and don't think I'll deal with them again. They were also supposed to be DME for equipment.

Speaking of equipment, I still do not have any yet. Blue Shield is my insurance company but my policy doesn't cover CPAP equipment until I've met my deductible.....which means in a nutshell that I have to purchase everything out of pocket. On the good side, I can purchase wherever I want and not have to deal with a DME. On the bad side, I don't happen to have an extra $800-$1,200 lying around to cover the new equipment, especially since I just had to get a "new-to-me" vehicle. I found the American Sleep Apnea Association and their program to help people in a financial bind sounded great. I got my application and donation submitted mid-April but have yet to receive equipment. Has anyone else gone through them? Any experiences to share? I know they're non-profit and may be a little short-staffed -- I work for a non-profit myself so I know how backlogged things can get.

In the meantime, sleep is still horrible, one episode of night terror in two months and I'm still exhausted during the day.

Also, my doctor did prescription for an Auto CPAP with setting of 4-20cm (om? I can't read his writing).

I found this forum around the time I was diagnosed and have been lurking about on it DAILY for tips, stories, everything. I'm glad I found such a caring community of folks with loads of information.

Thank you!

bassbunny5 wrote:Hi all,

Apologies in advance for the long post -- this is my first one! I was diagnosed with sleep apnea this January after probably 20 years of feeling exhausted all the time. I don't know exactly when the apnea started but I knew something was up when I started having night terrors recently at the age of 45 -- had some expressly horrific episodes where I would shoot straight up in bed and SWEAR that there was something in my room and it was going to kill me. Those nights would end with me fleeing my bdrm and camping on the couch for the rest of the night, all lights blazing and the TV on. I didn't connect those episodes to sleep apnea but I went in to see my cardiologist for routine exam and I explained to him the extreme fatigue and his response "uuuuh---you might have sleep apnea. let's get a test done." So off I went.

Sleep study was done at sleep center and results were:

Mild Obstructive Sleep apnea/Hypopnea
AHI (for entire baseline study): 5 per hr
AHI (during REM) 14 per hr
Lowest SPO2: 85% (does this number reference oxygen level?)

I received a summary report from my pulmonologist (he and my cardiologist share the same office), although sleep center was done at another facility. The sleep center was supposed to send me report and they never did which is why I got copy from pulmonologist. I also ended up doing my follow-up visit from sleep study with my pulmonlogist because I couldn't get an appt with the sleep doctor. I was throughly unhappy with them and don't think I'll deal with them again. They were also supposed to be DME for equipment.

Speaking of equipment, I still do not have any yet. Blue Shield is my insurance company but my policy doesn't cover CPAP equipment until I've met my deductible.....which means in a nutshell that I have to purchase everything out of pocket. On the good side, I can purchase wherever I want and not have to deal with a DME. On the bad side, I don't happen to have an extra $800-$1,200 lying around to cover the new equipment, especially since I just had to get a "new-to-me" vehicle. I found the American Sleep Apnea Association and their program to help people in a financial bind sounded great. I got my application and donation submitted mid-April but have yet to receive equipment. Has anyone else gone through them? Any experiences to share? I know they're non-profit and may be a little short-staffed -- I work for a non-profit myself so I know how backlogged things can get.

In the meantime, sleep is still horrible, one episode of night terror in two months and I'm still exhausted during the day.

Also, my doctor did prescription for an Auto CPAP with setting of 4-20cm (om? I can't read his writing).

I found this forum around the time I was diagnosed and have been lurking about on it DAILY for tips, stories, everything. I'm glad I found such a caring community of folks with loads of information.

Thank you!

Hi,

I wanted to chime in as someone who briefly worked on that program as a volunteer. Yes, they are definitely short staffed as when I was there, the only paid employees were the executive director and a part time assistant. If you don't hear anything in a month, you might want to give them a call.

If you can spend $200 to $300, you might want to see if you can find a machine on Craig's List as there are good deals to be had if you know what you are doing. We can tell you what to be on the lookout for if this is of interest.

Another reason this option might be better is with the ASAA program, you're not guaranteed to receive a data capable machine which is crucial to your therapy. This program will accept any machine for a donation as long as it meets the criteria for age and hours. Of course, if you can't afford to buy anything, getting a non data capable machine (a brick) is better than not receiving anything. But I wanted to make you aware of this.

Best of luck.

49er

You can also call cpap.com to get their actual prices (rather than the manufacturer's price). For the PR system 1 Auto, the difference is not negligible and brought the price into the reasonable range for me.

I got my backup cpap on ebay a few years ago and was happy with it.

Just check the total blower hours before buying, and you might also want to verify it's from a pet-free, smoke-free home.

Some deals are available on the forum too.

Welcome and good luck.

Another option could be a used machine form these folks. http://www.secondwindcpap.com/
I haven't personally used them but I believe they enjoy a pretty good reputation on this forum

Note: secondwind also has new, open box units, but then the prices get up close to those of our host for new, sealed units.
Mask insurance is awesome; sometimes it is free; but in any case, it is better than "eating" a mask that won't work.
When I had BCBS, the deductible for out of network was double that for in-network,
but I still saved by buying at cpap.com, (out of network).

Hey Bassbunny5,

Do you know what your supine and non-supine AHI readings are? It's possible that positional therapy could be your savior if you have little if any non-supine events. The events you are having are more likely in the supine position as well, and they may not even be related to apnea. Could simply be hypnogogic hallucinations (hypnopompic, if they occur as you are waking). You could also consider getting a Pure Sleep (online) for maybe $80 or so. It's a temporary oral appliance, and not as comfortable or effective as a custom made one, but might serve the purpose. If this works for you, you could wait for a time when your deductible has been met (December?), and get a nice one made by a dentist. Most studies show better compliance with oral appliances, so in the mild range, it might be the answer for you.

I have not used that organization but have bought a few used machines both on here and on Craigslist and had good luck with them. As has been suggested, more details from your sleep study could be helpful going forward. Some people do have positional sleep apnea and can help themselves by accommodating that by sleep position. The fact that you have been symptomatic for years, have frightening episodes at night, and have that 85% oxygen tells me it is important for you to find a way to address your sleep apnea. As you make decisions, I suggest you scrutinize your results for a few other things. One night in a lab may or may not be accurately reflective of your condition. All it can really show is what happened that one night. If you slept well, got a good sampling of all sleep stages and especially REM while supine, and did not have many arousals from causes other than respiratory events, then they probably got a pretty good picture of your situation. Otherwise there's a chance your apnea may not always be mild. For instance, people with many limb movements in their study have a good chance their apnea is worse when their legs are quiet. People with lots of spontaneous arousals or frequent wakings may have more events when they are sleeping better. Even if your report shows no reason to think your apnea may be more severe than that night, keep in mind a low count is not all that matters. Duration of those events is important. Frequent short events may disrupt your sleep more, but a few long events can prove more dangerous in respect to oxygen levels. Just don't let your count lull you into complacency.

Thank you everyone for the tips and info.

I'm just sitting back for now and waiting until I see what ASAA sends me. I did request an Auto CPAP that's fully data-capable but realize they may have to send whatever they have. I'll work with whatever I get for now (and be very thankful for it) but I've also been checking Craigslist for a decent used machine. If I get a brick from ASAA then maybe I could save up for a used unit that does have the full data ability and keep the ASAA unit as backup. there's a guy who's been posting fairly regularly on craigs with new machines. I don't know where he's getting them from -- could be a five-finger discount from someone's truck. If it comes down to a used purchase, I'll definitely check in here for any tips on what to look out for -- I know there's something about checking the usage vs machine hours?

I also checked out secondwind and they may be an option as well. I'm not picky! I'm all about using used and/or refurbished equipment so things don't get stuck in our landfills.

I'll check my summary report for any positional info. I do believe the AHI's are higher in the supine position but I don't normally sleep on my back. Makes me feel like I'm being prepped for a coffin. I did the supine in the study because tech told me they needed a reading in that position. I'm always on my side with very little limb movement. I don't thrash or roll side to side. I go into hibernation mode - I curl up on my side, burrow into my pillow, blankets over my head (with enough space for air) and I hunker down. I'm a cozy sleeper. I'm so neat that sheets on one side of bed will frequently be undisturbed in the morning -- except on night terror nights when all bets are off and I'm fleeing my room.

I also won't discount that the night terrors are hypnagogic -- there could be multiple things going on but I do want to concentrate on the apnea. For a little bit of history -- as a child (probably bwtn ages 10-15) I had many, many, many episodes of sleep paralysis. These would occur as I was falling asleep and/or waking up. When they would happen as I fell asleep, I would hear a roaring noise like a train coming and then I'd "fall" into this terrifying darkness where I was aware of my surroundings but could not move my limbs...really scary for a kid. Of course, I didn't know what it was or what was happening and I eventually grew out of it. I haven't had an episode like that since those times. My night terrors now also happen as I fall asleep (sometimes within minutes of my head hitting the pillow and I'm still pretty conscious) or when I've been in bed and asleep for a few hours. My pulmonologist said that in the instance of it happening shortly after laying down that I might have skipped several sleep modes and gone straight to REM.

I feel like it's all tied together and the first knot to start working on is the apnea. I would like to find out just how long I'm going without oxygen when I have my apneas. That's exactly how I feel during the day -- like my body doesn't have enough oxygen. I'm also anemic and taking iron so, again, it's all tied in. I am excited to start as soon as I get my equipment though!

Thank you all!

Do you know your Epworth Score? Early REM usually gets you a higher Epworth, but it honestly sounds like hypnogogic episodes, not early REM. I figured you would mention sleep paralysis at some point, but you are doing a good job avoiding these now by not going into supine sleep, and hopefully avoiding naps, which can bring this on with more frequency. Keep us posted!

YAY! I got email today that ASAA has shipped equipment. Can't wait to see what they were able to send.

Here's a bit more information from sleep study:

Epworth Sleepiness Score: 12
Supine AHI: 5.5 per hr
Non-supine AHI: 4 per hr

Sleep fragmentation was primarily due to sleep disordered breathing. Mild non-positional and REM-related obstructive sleep apnea/hypopnea syndrome was noted with mild associated desaturation, to a nadir value of 85% (compared to 97% baseline value). Aside from expected brady/tachycardias associated with sleep disordered breathing, no significant arrhythmias were appreciated. No significant leg movements were observed. PAP titration criteria were not met in time for a titration trial.

Will update my profile once equipment comes in. Thank you!