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new and seeking feedback
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sunshine Offline

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Post: #1
new and seeking feedback
Hi, I am new here and seeking feedback. I am happy to find a place in which people are so supportive and helpful of each other. Thank you in advance to anyone who reads and provides feedback (to anything below)!

I am not officially diagnosed with sleep apnea but know that I have it. I’m having trouble getting treatment and am considering purchasing an auto cpap and taking care of myself, without the support of doctors or my health plan.

I am 53 years old, almost 54. I’m female, overweight, with hypothyroidism, arthritis and psoriasis (started in 2013), “degenerative disk disease,” and blood pressure has been high off and on over the past few years. (I’m not on meds for it. It goes up and down. Highs have been in the 150s/90s, but often 130s-140s/90s, and sometimes 120s/80s. It has been 120s/80s over last couple months due to changing sleep position, although that hasn’t resolved sleep problem.)

I began waking with headaches in 2011. At that time, I weighed 20 lbs less and was involved in crossfit program, so in much better shape than now. I also swam regularly in years before headaches started and haven’t been able to get back to it since having the headaches and exhaustion. My activity level has plummeted since the headaches started, and my health has declined.

When I started waking with headaches in 2011, I went to urgent care (first time in my life I had headache with vomiting and that made me cry) and was told they were likely cluster headaches. When I followed up with my PCP, he said they were migraines. I never believed they were migraines (and had never suffered from headaches in my life before then, so it didn't make sense that I'd suddenly have migraines), but they were severe and disabling. Migraine medications didn’t help them, and we never identified any triggers. I cut out a lot of things in trying to figure out what was causing the headaches. But cutting various things didn’t stop the headaches.

Since 2011, the headaches became more frequent. I have also been completely exhausted over the past few years, and increasingly less functional, more confused, scattered, feeling really horrible, poor memory, and chronically late for work. But the doctors pretty much ignored me. In addition to migraine meds, a doctor suggested that I take magnesium and riboflavin (headache prevention), and I was prescribed a tranquilizer to help me sleep in 2014. I had gone to dr appt and laid down on exam table while waiting for doctor to come in, and dozed off. He seemed surprised to find me dozing off. I told the doctor I was waking up all throughout the night, and kept waking with headaches in the mornings, and he prescribed a sedative to take at bedtime. I only took it twice because, while I didn’t wake up as much during the night, I still woke with headaches and felt very depressed the days after taking the sedative. The depression was noticeable and not good. I felt that the sedative would just add to the problem if I kept taking it, so I stopped after only a couple days.

Over the last couple years, I’ve been feeling that I was on the verge of needing to take a disability leave from work due to problems functioning (didn’t want to do this but was feeling horrible), and I couldn’t figure out what was wrong with me. I was also falling asleep at my desk at work in the afternoon, and have caught myself nodding off while stopped in traffic on the freeway. I have a long commute in mostly bumper to bumper traffic, and I have employed various things to try to stay awake when driving. I’ve told doctors that but they ignore it.

In June of this year, I was waking daily with headaches, massive, disabling headaches. I had also gotten to the point of sleeping through 3 alarm clocks so just stopped setting them. In mid June, I awoke two mornings in a row with my air passage collapsed, throat closed off, unable to take a breath in for several seconds before air passage opened back up. That is when I realized that it was sleep apnea that has been causing my headaches since 2011. I saw a doctor on the second day that happened (already had appt scheduled – new PCP since my last two PCPs left my medical network) and she said she didn’t think that sounded like sleep apnea to her. (!) She wanted to start me on an anti-seizure medication to prevent migraines. My BP was high and she wanted me to return for monitoring, saying I would likely need to start BP medication. When I said I was waking up all though the night, she thought that could be from depression. I felt like she dismissed whatever I said based on some incorrect assumptions.

I declined the anti-seizure med and insisted on a sleep study. That night (the night following the second time I woke with air passage collapsed), I started sleeping the short way on my bed, back against my headboard so I cannot roll to my back when sleeping. (I live alone.) I started that on the night of June 19, and I have not had a single headache since! I went from waking with headaches daily to no headaches at all overnight by sleeping on my side in a way I cannot roll to back. In June, my BP was high (150s/90s) and since changing my sleep position, it has been checked 3 times and has been 120/80. And, again, not a single headache since June 19.

The side-sleeping is still leaving me with fragmented sleep. I wake from joint pain (shoulders, back, hips, knees) throughout the night, and also when I try to roll to back. I used to fall asleep on my side and wake on my back. Before realizing I had sleep apnea, I’d wake up all throughout the night; I thought it was insomnia. I’d sleep a little, maybe a couple hours on side, then spend time tossing and turning, and, if I got back to sleep, would invariably wake on my back with headache, and that would happen between 3:30 am and 8 or 9 am, but I’d usually wake between 5:30 and 7:30 am. It is clear to me now that my apneas were happening on my back in second half of night (early morning hours).

I went for center based sleep study on Aug. 1. (I had started my side sleeping on 6/19. I took earliest appt available for sleep study.) In the sleep study, it took a long time for me to fall asleep. (I was there two hours before my usual bedtime, and there was red flashing light on wall at feet (and no eye masks available, ended up wrapping pillow case around my head to block light), and I could hear techs talking and laughing). I fell asleep on my side twice, and woke when I rolled to my back. The first time I woke, after a short tossing and turning, I started feeling around for my book and glasses I had left next to my pillow (and was going to reach for light switch above bed after - at home, I’d often try to read and would fall back asleep when reading) but they were not there (tech had moved). When she saw me looking for something, she asked over speaker if she could help me find something, but I responded by asking to use bathroom. She came in and said that we were about half way through night and I had slept about 1 ½ hours, and she said that I woke right after rolling to my back. She said I immediately had trouble breathing after rolling to back, and she could see that is why I woke up. I eventually went back to sleep on my side, and the next time I rolled, I awoke during the roll. The tech then came in and said she wanted me to try to sleep the rest of the night on my back. She said they needed some data of me on my back. Just laying flat on my back, I can feel my air passage closing, and I couldn’t go to sleep. I think I spent about 1 ½ hours trying to sleep and finally, around 5 am, told her I wasn’t going to get back to sleep and wanted to go home. I expressed concern that it was a wasted night, I wasn’t able to sleep much or on back so didn’t have apneas during study, and she told me not to worry. She said I had demonstrated an inability or great difficulty sleeping on my back, and restricted air passage on my back. She said she took pictures of data that showed the restricted air passage on my back.

The sleep study report basically says I had difficulty sleeping and a lot of awake time due to unfamiliar environment. I had two REM cycles of normal duration, and the report says I slept on my side and supine, and there is no sleep apnea. The report didn't mention the restricted air passage on back, that the tech told me the data showed. The doctor who wrote the report recommended a “hypnotic” to help me sleep if I had same trouble at home (which sounds dangerous to me, for a person with sleep apnea). The doctor even wrote in the report that I reported (on sleep center’s survey completed prior to study) “a feeling of not breathing” when I was sleeping. No, I reported two incidents in which I woke up and was not breathing. That was not just a feeling. That was my direct experience of not breathing, air passage closed off, when I woke up. I can also feel air passage closing when I just lie on my back when awake. I also wrote on the report that when I first started waking with headaches in 2011, I told my doctor then that I felt like I wasn’t getting circulation to my head/brain when I was sleeping. That was how I felt when I awoke, that blood flow to my head had been cut off while sleeping. (You’d think that would have tipped my doctor back then off to the possibility of sleep apnea and lack of oxygen to brain.)

After the sleep study, I have seen a neurologist (also saw him before sleep study, when having daily headaches, he ordered MRI of brain which was normal) and a pulmonary doctor, both of whom said it sounds like sleep apnea to them but I need to repeat sleep study. Pulmonary doctor recommended home study (he owns equipment but his office couldn’t tell me cost) and is supposedly checking with plan to see if they will cover it. (It has been three weeks since I’ve seen that doctor and no update from his office (and I did call once since I saw him to check status). I also inquired with plan, they said they’d look into it and get back to me, but I haven’t heard back. I inquired not because I want to do another sleep study but I’m curious to see if the plan is willing to cover another.) The doctors say they cannot do anything without diagnosis of sleep apnea made in sleep study. Also, my insurance (Blue Shield PPO) won’t cover a CPAP without diagnosis of moderate to severe sleep apnea made in sleep study. (If I have apnea in the second half of night when on my back, I’m not sure that is enough for the plan coverage. However, my headaches and exhaustion and problems functioning were severe, and I know I need treatment. And I'm willing to just pay for it. It is my health at stake.)

The center-based sleep study cost over $2300, plus additional for dr who wrote report. The plan paid more than $1800, and my 20% coinsurance (facility and professional fee) was $485. I’ve tried to communicate with the sleep center and doctor (whose office won’t communicate with me since I’m not his patient, only had sleep study that he reviewed) about discrepancies between my experience and what tech confirmed and what report says, and how info I put on sleep survey seems to have been ignored, and that I need help in moving forward, but no response.

To do home sleep study and get meaningful data, I’d have to go back to sleeping on my back, and I’m not willing to do that. And the time and money it is going to take... I think I’d probably have to do center based titration study after home sleep study. I think I’d be better off just buying an auto cpap and managing the treatment myself. I tried to talk to the doctor about a trial with auto cpap rental, to get data to substantiate diagnosis, and told him I’d pay for it, no need to go through plan, but he didn’t seem to hear what I was saying. He was insistent he can’t do anything without sleep study confirming diagnosis. He also disagreed with ordering anything online, saying if he ordered a cpap for me, I’d need to have someone come out to set it up and make adjustments to the machine. I know that is B.S. While it would be great to have local support, I have serious doubts I’d have any meaningful support, and I can figure things out on my own (with help from all the great info online and here).

I’d be happy to do a rental trial with an auto c-pap, but I don’t think I’ll be able to get a doctor to write a prescription for that. I’m considering using an alternative method to buy a Resmed Airsense 10 Auto CPAP for her. I prefer to buy new. I’ve found two websites that have a prescription service but one has bad reviews. The other one appears to require you to buy from them. I’ve read in a couple posts that there is a list of doctors who will prescribe cpap without sleep study, but I haven’t found that list. Is there one, and can someone direct me to it?

Since starting sleeping on my side only, I’m feeling a little better, despite not sleeping well. Not having headaches is a major improvement. Over the last couple weeks (more than two months since sleeping on side only), my head feels clearer, far less confusion, and I’m not feeling so out of it. I’m waking feeling tired but not exhausted and horrible. I’d like to be able to sleep well, be able to sleep on my back (my joints can’t take being on my side all night, and I don’t want to live with nightly pain), and I’d like to get my energy and life back! I see treatment as a necessity, and an auto CPAP seems to be the best option. (I tried a wedge pillow. That was a bad night, and it jacked up my lower back for a day.)

When I think back to the massive headaches, and sleeping through three alarm clocks, it is scary. I’m so glad that sleeping on my side is keeping me apnea and headache-free, but it isn’t a long-term solution. It is disturbing to be facing such difficult obstacles, and lack of support from doctors, in trying to be diagnosed and treated for a serious health condition that can result in disability and death if left untreated. (I have some questions about policies related to sleep apnea, and I'll post something on that later.)

Any thoughts, feedback, advice, suggestions, will be appreciated! Thank you!

Sunshine (I’m not really sunshiny, but the name popped into my head when registering. I thought if people call me sunshine, maybe some of it will rub off on me. Smile)
09-14-2015 06:29 PM
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Mosquitobait Offline

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Post: #2
RE: new and seeking feedback
Well, all I can suggest is look for someone selling an automachine and buy it. It's going to take a while before you get a machine even IF you got a script tomorrow, in most cases. Without a prescription, you can't buy one new from commercial places.
09-14-2015 07:01 PM
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DariaVader Offline
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Post: #3
RE: new and seeking feedback
a home study is very likely to be more comfortable than what you encountered, and more insurances are covering them. Something else you can try is to get a recording oximeter and measure if your oxygen levels are dropping during the night, That would explain the headaches and support an apnea diagnosis. I don't know what size town you are located in, but there must be other doctors you can try who will respect that you know your own body; I would encourage you to find one and keep her or him.

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
Tongue Suck Technique for prevention of mouth breathing:
  • Place your tongue behind your front teeth on the roof of your mouth
  • let your tongue fill the space between the upper molars
  • gently suck to form a light vacuum
Practising during the day can help you to keep it at night

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
09-14-2015 07:04 PM
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OpalRose Offline

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Post: #4
RE: new and seeking feedback
sunshine,
Call your insurance to see if they cover a home sleep study. The bottom line is that without a perscription, you won't be able to purchase a machine from anyone reputable, and your doctor is not going to write a script without a sleep study and diagnosis.

OpalRose
(This post was last modified: 09-14-2015 07:40 PM by OpalRose.)
09-14-2015 07:36 PM
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Sleeprider Online
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Post: #5
RE: new and seeking feedback
What was the result and recommendation of your sleep study? You probably have enough data for a Dx of obstructive sleep apnea. Your regular doctor can write your prescription, if you can't get it from the specialists. Any auto machine will have data and allow you to self-titrate and be effectively treated.

Your situation does not sound that much different from mine in 2008. I went to a sleep study, and did not tolerate the clinic environment well. I slept enough to show severe OSA and was prescribed an auto CPAP. I have not seen a sleep doctor since, but my primary physicians have always supported any needs we discussed.

As long as you get an auto cpap, you will be able to determine the efficacy of your treatment and make the changes necessary to optimize the settings. Just do it.

______________________________________________
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09-14-2015 07:51 PM
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trish6hundred Offline

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Location: Missouri, USA

Post: #6
RE: new and seeking feedback
Hi sunshine,
WELCOME! to the forum.!
Much success to you in getting a home sleep study and then a CPAP machine.
Hang in there for more feedback. Oh, by the way, if you want to see which machines to avoid and which ones to buy, check out this very helpful link: http://www.apneaboard.com/wiki/index.php...ne_Choices .

trish6hundred
09-14-2015 08:31 PM
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3porpoise Offline

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Post: #7
RE: new and seeking feedback
Hi sunshine,
You may consider requesting the full 5-6 page diagnostic sleep study report upon which the 2 page summary report is based. You could see how many times you desaturated in the time you did sleep. What sleep stages you reached . You could try calling the sleep tech that you spoke with that night re trouble breathing on your back and explain it wasn't documented . Then take it to your GP.
If you lay on your back during the day , do you feel the trouble breathing? Could your thyroid be swollen ?
Hope you get this sorted out. All the best.
3
09-15-2015 07:43 PM
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vsheline Online

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Post: #8
RE: new and seeking feedback
(09-14-2015 06:29 PM)sunshine Wrote:  Any thoughts, feedback, advice, suggestions, will be appreciated!

Hi sunshine,

An inspired name.

As I am sure you fully realize, you have OSA and it seems like your doctors have been acting obtusely.

I think part of the problem here may be that your case happens to be somewhat unusual.

Another part of the problem may be that insurance companies have forced doctors in USA to follow only where test results indicate a diagnosis, and in your case OSA is not indicated when sleeping on your side, and you did not (you cannot) sleep on your back. So, your measured AHI was low and, in that alternate universe in which your doctors live, your diagnostic study results did not indicate OSA.

I suggest finding another doctor. There are many good ones who will not ignore the obvious. I can only assume there are some good ones in your area, too.

1. You have a right to receive for your own records the full diagnostic study results, including all data. (Usually 4 to 6 pages.)

Does the sleep data show a deep desaturation in your blood Oxygen before you woke up? That would corroborate your story, and would be good to persistently bring to your doctors' attention while insisting on skipping another futile diagnostic sleep study, to skip to the titration study. If your General Practitioner or any of your doctors cooperates and submits a request for preauthorization of a titration study, it may be approved upon the second appeal.

I would expect a request for preauthorization to skip a second diagnostic study and proceed straight to a titration study, is sure to be denied twice.

After the initial denial I would expect that you would need to appeal twice. The first appeal would be denied, because the initial denial would not have been caused by some clerical error or anything like that. The second appeal will go to a higher level of folks, who may have discretion to allow a titration study based on the inconclusive results of your diagnostic study.

2. If the way to an overnight lab titration study is blocked, you can try for a Home Titration (Trial).

A Home Titration (Trial) might work, because with APAP treatment you might be able to sleep on your back, but probably NOT if your pressure range is "wide open" (4 to 20). Perhaps a range of 10 to 20, or 15 to 20 might work. (And that means you may need the home trial to last at least a week, preferably a month, because it may take a week or two just to get used to such a high pressure and to be able to sleep through the night.)

If the machine is set wide open and stays at a low pressure of 4 (because you are sleeping on your side) and you suddenly roll onto your back and immediately have total obstruction of the airway, even the fast-reacting standard ResMed AutoSet algorithm is not going to be able to prevent this total obstruction which turns on/off like a light switch as you change sleep positions.

After you roll onto your back and immediately have total obstruction of the airway, the pressure may stay at 4 and you may simply have a long apnea and wake up on your back, before the machine's algorithm determines that the pressure suddenly needs to be way, way higher (because a very long apnea suddenly occurred). But now you are wide awake and it will be a while before you can relax and get back to sleep (on your side, of course). And unless you immediately fall asleep again and roll onto your back again, at least 5 times every hour (no - that's not going to happen!) then your Apnea Hypopnea Index may remain less than 5.

Please understand that all APAP machines (and all standard bi-level machines without a "backup respiration rate" feature) do not respond or raise the pressure during an apnea. These machines all wait to see how long the apnea lasts. (If you have EPR enabled, the EPR will go away after perhaps 15 seconds, but other than that, the pressure will not be changed during an apnea.) Nothing is done to interrupt the apnea. After an apnea or hypopnea ends, or when there is snoring or signs of "Flow Limitation" the pressure will be raised a little in order to help prevent recurrence. If there is sudden total obstruction of the airway, there is no snoring or Flow Limitation, and the pressure will not be raised until after the body ends the apnea by itself, by a small jolt of adrenalin and the resulting arousal or awakening.

So, you may need the Min Pressure to be somewhere between 10 and 20 cmH2O, so that when you roll onto your back hopefully you will not immediately have total obstruction of the airway.

The company which provides the home trial may not listen to your request that the Min Pressure be higher than 4. I suspect you will need to be proactive and assertive in getting the Min Pressure adjusted higher. For example, it may make everything so much easier if (even before the home trial is scheduled or begins) you can get the prescribing physician to specify that the Min Pressure shall be set according to the patient's preference.

Actually, in practice, after APAP patients are issued machines and start therapy the Min Pressure is eventually set according to patient preference, but unless the prescribing doctor indicates otherwise, during titrations the initial Min Pressure is usually set the lowest which the patient can tolerate, like 4 or 5 or at most 6. (I suspect 6 would likely be too low to prevent your sudden total obstructions.)

I suppose the prescribing physician probably could specify that an in-lab titration or at-home titration should start at the highest pressure the patient can tolerate, and if no obstructive events are seen during supine sleep at the initial pressure settings, then the pressure should be gradually lowered to find the pressure at which obstructive events occur during supine sleep.

If at the start of the Home Trial the Min Pressure is initially set to 10, then you may need to mask up and (with machine running) use it while reading or watching TV a few hours, just to get used to the pressure for one or more days before trying to fall asleep at that pressure. It may be good to do this no matter how low the initial Min Pressure is, to help you get used to breathing under pressure.

I think it usually takes a week or two for our breathing muscles to strengthen and become fairly accustomed to breathing under pressure.

3. You may need the standard (fast-reacting) ResMed AutoSet algorithm, not the slower-to-react new AutoSet For Her algorithm, nor the slower-to-react Philips Respironics System One Auto algorithm. (The AirSense 10 AutoSet For Her has three algorithmic modes to choose from, the AutoSet For Her mode, the standard AutoSet mode, and simple fixed-pressure CPAP mode.)

4. If the pressure needed to prevent apnea and hypopnea when sleeping on your back is 15 or higher, please insist on receiving a standard bilevel auto machine, preferably the ResMed AirCurve 10 VAuto, which is RedMed's optimal machine for obstructive sleep apnea uncomplicated by central apneas. Patients with pressures of 15 and higher are often prescribed bi-level machines because bilevel therapy makes high pressures much less uncomfortable, and ResMed machines are known for responding more quickly to a sudden onset of obstructive conditions.

5. To gather data to show your doctors, I suggest getting a "recording" pulse oximeter. No prescription is needed. (Supplier 19 carries them. A link to the Supplier List is at the top of all forum pages.) I would recommend the type which is worn on the wrist with separate finger sensor cup, because this type is far more comfortable and (I think) is less likely to move and have erratic readings.

In the meantime, it may stop your sides from getting sore if you are able to obtain a 3" foam mattress topper. I need to sleep on my sides, and the foam topper allows me to do that without my hips slowly becoming very sore.

My case is kinda unusual, too. If I roll onto my back my machine may not be able to keep my airway open, even if the inhalation pressure rises as high as 25 cmH2O, which is as high as most bilevel machines can go.

Good luck and take care,
--- Vaughn

Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
(This post was last modified: 09-20-2015 11:00 PM by vsheline.)
09-20-2015 08:07 PM
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AirPlease Offline

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Post: #9
RE: new and seeking feedback
I strongly encourage you to find better (more attentive) medical practitioners. I had a sleep study done several years ago, and could not sleep on my back during the study, as I feel as if I am suffocating when I am on my back. Apparently at that time, when sleeping on my side, no apneas occurred, and I was told I did not have sleep apnea. I knew something was wrong, as I could not sleep on my back, and I was tired during the day, but the sleep center wanted me to take a class on sleep hygiene instead. I took the class (which was actually helpful), but was still tired all the time. Recently, I asked for another sleep study, and actually managed some time on my back. Well surprise, surprise, it was discovered that I have sleep apnea! I might have had treatment for several years now, if I had just kept pushing at the time. I really want to have some medical practitioner "look out" for me, but, it just isn't realistic. I have much better outcomes when I advocate for myself. Good luck!
09-22-2015 07:06 PM
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sunshine Offline

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Post: #10
RE: new and seeking feedback
Thanks everyone for the welcomes, helpful comments and suggestions.

I'm in the LA area, CA, and for the past 26 years, I've used doctors associated with Cedars Sinai. I previously thought they were the best in the area, but I've seen 4 different doctors now since realizing I have sleep apnea, and they all are super-glued to the idea that a diagnosis can only be made in a sleep study, and they can't do anything without a sleep study showing I have sleep apnea. Talking to them is like talking to someone who sticks their fingers in their ears and sticks their tongue out, making noise to not hear what you are saying. I'm seriously disappointed. Since I have a PPO, I can go elsewhere. I'm aware that UCLA has its own sleep center and their doctors also require sleep studies to diagnose and prescribe cpaps. One other problem here is that the doctors with good reviews have very long waits to get in (2 to 3 months), and there are a lot of quality of care problems everywhere. I've been websearching to find info about doctors who might prescribe cpap (auto cpap trial rental) without diagnosis in sleep study, but I haven't found that info. I don't want to blindly make appts and go from doctor to doctor...

I work for a large employer that offers multiple plans and vendors, and I'm switching to Kaiser during open enrollment. I've been able to speak to reps of Kaiser and Health Net, which are among my options. HN has the same sleep study requirement that my current plan has, but Kaiser doesn't use formal sleep studies. They use oximeter at home, followed by home trial of auto-cpap, from which they use data to determine a person's needs (usually prescribing set pressure cpap after auto cpap trial). I've spoken to a sleep apnea patient at Kaiser and a Kaiser doctor. The patient said he went to PCP, was referred to sleep specialist and sent home with oximeter, which he turned in the next day. He received a call a day later to attend an orientation class and was sent home with the auto cpap and mask of his choice. He said all that happened within a week! The doctor I spoke with confirmed their process. I've also spoken with my employer's account management at Kaiser, and it sounds like they will be more willing to advocate for me with Kaiser. They listened and appeared to understand my situation. It sounds like Kaiser's process seems more efficient and has less obstacles.

Thanks Vaughn and DariaVader for the suggestion to obtain oximeter. I ordered one a few days ago and should have it soon.

I have called and emailed my current plan (including account management, not just customer service) to find out if they will cover the home sleep study after the center based one, and they said they would look into it and get back to me. I also asked if they would accept data from a home trial of auto cpap to establish diagnosis (with me paying for home trial of auto cpap, since it is not plan standard to cover one.) I haven't received any response. It has been 4 weeks. I've also called the doctor's office a couple times since seeing the doctor that recommended home sleep study, and they said they are going back and forth with my plan. That is just crazy, and I'm so thankful that I'm able to sleep on my side, although uncomfortable, avoiding apneas. I would be much worse off if that was not the case. (I'm not at all anxious to do a home sleep study, as I don't want to knowingly sleep on my back. I'd rather find a doctor who will prescribe rental trial of auto cpap, even if I have to pay the rental in full.)

Thanks for the suggestions of obtaining full sleep study and data printed out. I've requested it and am waiting for it to be available for pickup. (I had previously requested it on disk but I'm not able to access it because I don't have the required software.)

I can't communicate directly with the tech from my sleep study. No way to reach her. I've emailed the director of the sleep center and called the doctor's office who read the report, and can't get a substantive response from them about what the tech told me vs. what sleep report summary says.

Vaughn, thank you for taking the time to write up all that info for me. It is very helpful. I was trying to find an auto cpap that I could purchase but it sounds like I need to do trial first to make sure it is what I need. I hadn't read much about the bilevel cpaps, and I don't want to spend my money on an auto cpap to find that it might not work so well and an bilevel auto cpap would be better. I didn't want to wait until January and change of health plans to get treatment, but now, after reading your post, I think it is best to find dr who will prescribe rental, or wait until I get into Kaiser.

I do have a memory foam topper on my bed. I've tried a few of them and have one that isn't too thick, I think 3 inches, and egg-crate like, for coolness. The thicker one was way too hot and uncomfortable, like sleeping in a giant marshmellow that had been roasting over a fire!

Thank you all again for all the helpful info and suggestions!
(This post was last modified: 09-23-2015 08:58 AM by sunshine.)
09-23-2015 08:57 AM
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