Frustrated, and still looking for answers

first time poster here....

To try to "briefly" summarize my struggles with sleep to this point.

I am a 51 year old male, fairly slender build. I have dealt with sleep issues most of my adult life.

Typical night time symptoms, at their worst, would be getting "startled awake", shortly after falling asleep, hyperventalating, sitting up in bed, sometimes startled out of bed, finding myself standing up in the bedroom, trying to catch my breath. Some nights, it would happen again as soon as I fell back asleep. But in most cases, I would eventually fall asleep, sometimes dreaming. Other nights, I would not notice those extreme symptoms. It almost seems like it comes and goes in waves.

Daytime symptoms are not waking up refreshed, hard to focus, concentrate, read, sometimes minor headache. No instances of falling asleep at the wheel or keyboard.

First sleep study in 1998, then 2002, 2005, and 2015. All at different sleep labs. My current sleep doctor didn't show much confidence in the sleep labs from the earlier studies.

Along the way, we have treated and appeared to rule out acid reflux, post nasal drip, and anxiety disorder/nighttime panic attack. Treatments had mostly consisted of meds, including all types of sleep meds and benzos.

My last sleep study, in April of 2015, showed mild sleep apnea and some periodic leg movement. In general, it was not a good night sleep for me, as far as falling asleep or staying asleep. I was suprised they got the data that they did. The data showed my AHI was 5, RDI was 6, longest A/H was 56 seconds, PLM arousal index was 7, and oxygen desaturization was 92%. Mild snoring. I did not experience the "hyperventalating" symptoms as described above during my study. His physical exam showed some deviated septom and scalloping of my tongue. And I have never been aware of leg movements waking me up.

After my study, the sleep doc explained, since it was "mild" apnea, it is now harder to get approval from insurance for a cpap device, so we first tried other treatment options. Nasal steroids, antihystamines, breath right strips, theravent/provent strips, plus some oral minerals for the leg movement. He also mentioned that oral appliances would be another option, and surgery a last, and usually unsuccessful, resort.

None of the above treatments really showed much benefits. Since then, I was able to get approval for an auto cpap unit (set at 4-20cm), with nasal pillows, and a chin strap. It took a bit to get used to the pillows, air pressure, etc, but was eventually able to fall asleep with it. But I am finding that I seem to still experience the same "events" that startle me awake, even with the mask and chin strap. The sleep doc said some people do not adjust to the auto cpap, and next step would be trying a full face mask. If that does not work, he wants another sleep study with cpap so he can find the right air pressure for my apnea.

I am frustrated to say the least. Over the years, I found my hopes getting up after a visit to a doctor who would provide a new treatment option, only to be disappointed when it didn't resolve anything. Which explains why there was a long stretch of time between sleep studies. Now very skeptical that a treatment option exists. I almost feel like I've got some hidden condition that has been overlooked or not obvious. The doc explained that I am mild apnea due to the low AHI, but just common sense seems if I am getting startled awake gasping for air, and jumping out of bed, theres something more serious going on. I have forgotten what waking up refreshed feels like.

So, to sum it all up, does it sound like I am on the right path with my latest sleep doctor and treatments? Any other thoughts or experiences are appreciated.


Thanks again

Hi - have you been tested for 'silent GERD" - the acid reflux that may not feel present in the daytime, but that can definitely affect your sleep?

Have you been tested for any other conditions e.g. thyroid problems, diabetes, low hormones or Vit D?

Having an Apap set at 4-20 means it's been left at the default hi/lo #'s, and not set at any numbers suggested by a sleep study to be effective for apnea... happens all the time unfortunately, but 4 is almost impossible to breathe at for most of us and we've turned it up to 6, or a bit more when necessary (and don't let the doctor or DME tell you 'you can't do that' because it's nonsense.

I suggest you download Sleepyhead software and let us see some graphs of your overnights - it's free (tho' you need a card reader), and instructions are in the first forum posting Announcement "'Tutorial... ".

hivishornet wrote:an auto cpap unit (set at 4-20cm)

Do you know how to use the free Sleepyhead software to analyze pressure changes, mask leak and breathing events?

CPAP machines are not magic. They usually need some tweaking to get a good therapy that is preventing breathing events.

See - https://sleep.tnet.com/resources/sleepyhead

You seem to be very lucky to find only doctors that made the top half of their graduating class possible.
As has already been suggested you should download the free Sleepyahead software and learn to use it with help from the geniuses here.
Then take charge of your own therapy and adjust your machine until it is dialed in to the best therapy you can get.
You make it work with help you will find here.

hivishornet wrote: My last sleep study, in April of 2015, showed mild sleep apnea and some periodic leg movement. In general, it was not a good night sleep for me, as far as falling asleep or staying asleep... The data showed my AHI was 5, RDI was 6, longest A/H was 56 seconds, PLM arousal index was 7, and oxygen desaturization was 92%. Mild snoring... His physical exam showed some deviated septom and scalloping of my tongue. And I have never been aware of leg movements waking me up... ... Now very skeptical that a treatment option exists. I almost feel like I've got some hidden condition that has been overlooked or not obvious.

Really hate hear that you haven't been able to get the help you need from your providers. I am going to leave the discussion of optimizing your CPAP treatment to the others. It is my opinion that this is your first priority.

As to your sleep apnea being mild - maybe it's not really. First of all, how much sleep were they able to capture, and was there significant time spent in REM while supine? That's thought to present the best opportunity for the worst case scenario to manifest. I would want to know that the data captured was sufficient to believe it well represents your usual sleep.

About the scalloped tongue - I had that issue but it resolved over time on effective CPAP treatment. Not sure of the mechanics of this problem or its resolution. Wouldn't hurt to make sure your thyroid is ok since an enlarged tongue can be a symptom of hypothyroid. My thyroid was normal.

About those limb movements - without seeing the details of your report, I'm guessing the limb movement index was higher than 7 if 7 caused arousal. And I'm guessing this count you gave is the only the limb movements not associated with respiratory effort. Am I right? Do be aware that limb movements can mask apneas in a sleep study (and vice versa). Every time a limb movement causes arousal, one has to wonder, if these arousals were absent, would that space be filled with apneas? (and again vice versa) Hence a mild OSA diagnosis in the presence of limb movements could mean one or both of the diagnoses are under appreciated. If this is likely a problem in your case we could talk about it more.

Thanks all for your replies.

Julie wrote:Hi - have you been tested for 'silent GERD" - the acid reflux that may not feel present in the daytime, but that can definitely affect your sleep?

Have you been tested for any other conditions e.g. thyroid problems, diabetes, low hormones or Vit D?

Having an Apap set at 4-20 means it's been left at the default hi/lo #'s, and not set at any numbers suggested by a sleep study to be effective for apnea... happens all the time unfortunately, but 4 is almost impossible to breathe at for most of us and we've turned it up to 6, or a bit more when necessary (and don't let the doctor or DME tell you 'you can't do that' because it's nonsense.

I suggest you download Sleepyhead software and let us see some graphs of your overnights - it's free (tho' you need a card reader), and instructions are in the first forum posting Announcement "'Tutorial... ".

I have never been specifically tested for silent GERD. Part of past treatment had included a few different types of heartburn meds, Nexium, etc. Most recent physical/blood work showed no signs of any other conditions like thyroid probs. I understand my apap is set at the defaults. Its my understanding, from my current sleep doc, that in order to set it to a fixed pressure like a traditional cpap, I must have another sleep study? Is this correct? I am scheduled to see him again in a few weeks to review my current apap useage.

I will download the Sleepyhead software. Will it still give me useable date even though I am unable to wear it the entire night? As mentioned in my initial post, most of the time, I still have the same "events" when I wear it, and just end up taking it off.

ChicagoGranny wrote:

hivishornet wrote:an auto cpap unit (set at 4-20cm)

Do you know how to use the free Sleepyhead software to analyze pressure changes, mask leak and breathing events?

CPAP machines are not magic. They usually need some tweaking to get a good therapy that is preventing breathing events.

See - https://sleep.tnet.com/resources/sleepyhead

Thanks ChicagoGranny, I will download the Sleepyhead software.

kteague wrote:

hivishornet wrote: My last sleep study, in April of 2015, showed mild sleep apnea and some periodic leg movement. In general, it was not a good night sleep for me, as far as falling asleep or staying asleep... The data showed my AHI was 5, RDI was 6, longest A/H was 56 seconds, PLM arousal index was 7, and oxygen desaturization was 92%. Mild snoring... His physical exam showed some deviated septom and scalloping of my tongue. And I have never been aware of leg movements waking me up... ... Now very skeptical that a treatment option exists. I almost feel like I've got some hidden condition that has been overlooked or not obvious.

Really hate hear that you haven't been able to get the help you need from your providers. I am going to leave the discussion of optimizing your CPAP treatment to the others. It is my opinion that this is your first priority.

As to your sleep apnea being mild - maybe it's not really. First of all, how much sleep were they able to capture, and was there significant time spent in REM while supine? That's thought to present the best opportunity for the worst case scenario to manifest. I would want to know that the data captured was sufficient to believe it well represents your usual sleep.

About the scalloped tongue - I had that issue but it resolved over time on effective CPAP treatment. Not sure of the mechanics of this problem or its resolution. Wouldn't hurt to make sure your thyroid is ok since an enlarged tongue can be a symptom of hypothyroid. My thyroid was normal.

About those limb movements - without seeing the details of your report, I'm guessing the limb movement index was higher than 7 if 7 caused arousal. And I'm guessing this count you gave is the only the limb movements not associated with respiratory effort. Am I right? Do be aware that limb movements can mask apneas in a sleep study (and vice versa). Every time a limb movement causes arousal, one has to wonder, if these arousals were absent, would that space be filled with apneas? (and again vice versa) Hence a mild OSA diagnosis in the presence of limb movements could mean one or both of the diagnoses are under appreciated. If this is likely a problem in your case we could talk about it more.

I asked the same question to my sleep doc regarding the diagnosis of my "mild" sleep apnea, especially with the times that I experienced the more obvious "gasping" or "sitting up in bed" symptoms. Based on the data from my sleep study, he was confident that my apnea was not dramatically worse that what was recorded. I still have trouble with his answer.

Interesting point regarding limb movements masking more apnea events. Per my poly report, the PLM index was 22. Does not list how much time I was asleep.

As mentioned previous, I have a follow up appointment in a few weeks, to discuss how my apap treatment is working.

hivishornet wrote:

Julie wrote:I suggest you download Sleepyhead software and let us see some graphs of your overnights - it's free (tho' you need a card reader), and instructions are in the first forum posting Announcement "'Tutorial... ".

I will download the Sleepyhead software. Will it still give me useable date even though I am unable to wear it the entire night? As mentioned in my initial post, most of the time, I still have the same "events" when I wear it, and just end up taking it off.

certainly far more useful data than you have now

If you get Sleepyhead working right - and most do, not complicated - you should be able to titrate yourself (with the Apap) plus get lots of other info... a sleep study is not likely to be needed unless something very unusual occurs.

hivishornet wrote:Its my understanding, from my current sleep doc, that in order to set it to a fixed pressure like a traditional cpap, I must have another sleep study? Is this correct?

Give the guys in the forum some of your Sleepyhead charts and they will help you get the settings correct. There are some very good people here (Not you Julie) who can help you get it right.

Known troublemaker... hope you ignore it.

I agree with what others have said here in relation to your settings. There are certainly other treatments for other diagnoses. I can't really comment on those, I'm not a physician and others here probably know quite more than I do.
What I will comment on if your CPAP therapy as it seems your set up to fail at this point. A settings of 4-20 is not optimum. It is okay to start with, but get your data downloaded and have the pressure adjusted to a tighter settings ranged. Such as 10-14 or 9-12 to assure your comfort, alleviation of apneic events and so forth.

thecpapguy! wrote: Such as *guess* or *guess* to assure your comfort, alleviation of apneic events and so forth.

hivishornet, do please ignore any off the cuff pressure ranges that anybody happens to make up without even seeing any data.

thecpapguy! wrote: What I will comment on is your CPAP therapy as it seems your set up to fail at this point. A settings of 4-20 is not optimum. It is okay to start with, but get your data downloaded and have the pressure adjusted to a tighter settings ranged. Such as 10-14 or 9-12 to assure your comfort, alleviation of apneic events and so forth.

I think there are some that have a misconception of what I wrote. Hivishornet, the pressure settings that I reference in my above quote are simple examples. Sometimes it seems that some users are confused when pressure changes are suggested especially when your initial settings are set to 4-20. So, in my above quote when I stated "such as", the clarity is that those are examples of pressure ranges that seem to be more suitable for the users that I have spoken with. This means a spread between the lower pressure setting and higher pressure setting of 3-5. Such as 10-14 or 9-12 or any other acceptable combination.

I also want to make sure you notice that you should also get your data downloaded as suggested by other awesome members of the forum. Once you have the data download it would enlighten and reveal to what "tighter" pressure range may be acceptable for you.

God bless!

Thanks thecpapguy! and all for the additional comments. I will get my sleepyhead data downloaded and posted here shortly.

A few other questions:

It sounds like my 4-20 apap settings are not optimal, which my sleep doctor suggested could be the case, but wanted to start there as a baseline. Since I am still having events with my apap and chinstrap on, does this suggest my apap is not able to respond and increase air pressure fast enough when an event occurs?

Is it unusual to not be aware of apnea events every night? My extreme events are the sudden "sitting up in bed, out of bed, catching my breath" symptoms. But other times, I am not aware of those extremes at all, which certainly doesn't mean I'm not having lesser events. I did not have any extreme events during my sleep studies.

And is it also unusual to not experience these gasping symptoms the entire night? I have found most nights, I experience the extreme events in the first few hours of trying to fall asleep, but as the night and early morning go on, they are not obvious, and I do seem to get some sleep, and some dreaming as well.

hivishornet wrote:does this suggest my apap is not able to respond and increase air pressure fast enough when an event occurs?

Your machine responds to snores and flow limitations which usually precede apneas.

Your minimum pressure may be set too low. Get Sleepyhead running, and we can better answer all the questions you posted in your last comment. Too much guessing without it.

If it were me, I would immediately change the min pressure to 7.0 without yet seeing Sleepyhead charts.