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+--- Thread: 1 year on CPAP - No progress: Lowenstein Prisma Smart (/Thread-1-year-on-CPAP-No-progress-Lowenstein-Prisma-Smart)
1 year on CPAP - No progress: Lowenstein Prisma Smart - phoen1kx - 11-20-2023
Male, 22yo, 95kg, 196cm, physically active.
Soon, it will be 1 year since I started CPAP. I'm not getting better. Actually, I feel like my health's getting worse and worse. I can't even describe how terrible I feel day after day.
Not really sure what to do anymore. Doctors told me the data looks good. I've experimented with different pressures, CPAP/APAP, humidifier... no progress. Just hopeless, I feel like a total mess.
Honestly I might consider undergoing surgery.
Elevoplasty, septum correction, and turbinate reduction. Doctors told me to consider it, the rest is up to me to decide.
Data from last night:
Almost every night looks like this, with ahi being mostly under 2, a couple days ago I saw a 5 and a 6, not sure what caused it to be that high, but there were also some flawless 0.2s, 0.5s and such
Any help would be highly appreciated.
[attachment=56313]
RE: 1 year on CPAP - No progress - Dormeo - 11-20-2023
Could you describe how you feel during the day? Are you sleepy, longing for a nap? Are you tired, wanting to sit or lie down? Do you feel worse after physical activity? If no to all of those, do you have "brain fog"?
The reason I'm asking is that one possibility to consider is that the way you feel during the day isn't related to your night-time respiration. Here are some things you could try doing, before you decide to have surgery:
Wear an oximeter at night to see whether you're having significant O2 desaturations despite your good numbers. I'm willing to bet you're fine on that front, but it's easy enough to check.
Try to get more sleep at night. Many people need at least 8 hours of actual sleep in order to feel rested.
Have blood tests for problems in the following areas: testosterone, Lyme disease, vitamin D, vitamin B12, thyroid, iron, connective tissue disease or other autoimmune conditions.
RE: 1 year on CPAP - No progress - paulag1955 - 11-20-2023
Thyroid, especially, will mimic apnea symptoms. I was referred for a sleep study for excessive fatigue and brain fog, and I do have apnea, but my symptoms were resolved by treating my hypothyroidism.
RE: 1 year on CPAP - No progress - phoen1kx - 11-21-2023
My main issue is brain fog. I feel like I'm cognitively impaired, like I have dementia or something. My thinking is slow and I feel very confused at times. All this combined with low energy and depression-like symptoms.
I think I already checked pretty much everything you recommended.
Vitamins and iron seemed fine, as well as hormones and the thyroid. Not sure about autoimmune conditions, I'm waiting for the results from gastroscopy and I have to do some other things related to the gut, to test for gluten and lactose intolerance.
I do get enough sleep, maybe even too much of it.. on average 8 hours for sure. I often oversleep since it's hard to wake up...
RE: 1 year on CPAP - No progress - PeaceLoveAndPizza - 11-21-2023
Your data looks good, your flow rate not quite so. There are many spikes/sags that are likely impacting sleep quality. The best example is between 0700 and 0745. Those are examples of arousals that are not being counted as apnoeas, but are quite possibly impacting sleep quality.
Consider trying a bit more pressure and a bit of softPAP. In the absence of flow limitations driving up pressure, you may need a bit more to help smooth out the breaths. SoftPAP can help with that as well, but I would adjust pressure up by 1 and softPAP up by 1 to balance it out and see how if it helps.
If you have not done so, LankyLefty27 has a number of videos on UARS and RERAs that may be of interest.
RE: 1 year on CPAP - No progress - Dormeo - 11-21-2023
Ah. I mentioned sleep time because the chart you posted showed less than 7 hours of machine usage. Maybe it was atypical.
An autoimmune panel would be a good idea; I hope your doctor will be open to it.
Could depression be behind your daytime fogginess?
If you are concerned about spikiness in your flow rate, just zoom in on the spikes to see what they look like. Are they part of some arousal breathing? If so, did anything happen right before them to trigger the arousal (e.g., a leak)? Or are they just sighs?
Brief arousals are a normal part of sleeping, so by themselves they're not a cause for concern. What *is* problematic is having arousals and then staying awake after them. This is especially true when this messes up your progression through sleep stages. Unfortunately our machines don't generate data that can tell us about our sleep "architecture."
RE: 1 year on CPAP - No progress - paulag1955 - 11-21-2023
Hopefully your thyroid was checked beyond simply measuring your TSH, which isn't even a thyroid hormone. Also, most insurance companies use a laughably broad reference range for "normal" thyroid function. Also, many doctors rely solely on the numbers and disregard the patient's symptoms. So If your T4 and T3 weren't tested, try to get those tests. You may have to see a naturopath, though, to get a diagnosis that considers all the relevant factors.
RE: 1 year on CPAP - No progress - Sleepy Quixote - 11-21-2023
@phoen1kx
When you had your sleep study was there any indication of PLMs in the report, it would show up as a PLM Index of x number along with actual number of PLMs and PLMs with arousals. The reason I ask is many sleep Docs just gloss over that portion if at all when they review your report with you and concentrate on the OSA. Your flow rate chart indicates quite a bit of sleep disruption and PLMD can do just that. Worth digging the old sleep study paperwork out just to take a look.
If you are negative PLM or low, start focusing on what you need to do to smooth that flow rate out a good bit.
good luck, keep at it, that's how we get good at it.
RE: 1 year on CPAP - No progress - phoen1kx - 11-22-2023
Sleep study:
(Includes PLM index):
[attachment=56364]
Hormones/Vitamins:
(Apparently these are all normal...)
[attachment=56365]
------------------------
[attachment=56366]
It looks like doctors only care about the AHI number and nothing else since they didn't even mention the flow rate.
I don't really wake up during the night, and insomnia and falling back to sleep when awoken is not a problem.
This is just my guess, but it could be that I'm having tons of these micro-arousals that don't wake me up but affect my sleep quality.. Not sure what to do about that.
RE: 1 year on CPAP - No progress - Dormeo - 11-22-2023
There's no question you need to be on CPAP, given your sleep study. But because you don't feel sleepy during the day but do feel a lot of brain fog, I suspect you have an additional health problem that's affecting your daytime condition.
I can't guess what most of the words in your sleep study mean. Did the study include a breakdown of the amount of time you spent in each sleep stage (light, deep, REM)? That might help us with the question about micro-arousals disrupting your sleep architecture.
You didn't answer the question about depression. It's natural to feel depressed in response to persistent brain fog, but do you have any insight into whether depression might also be contributing to your cognitive state? Have you asked your doctor about that?
One additional thought: years ago, when I was experiencing deep fatigue, the battery of tests that I had included an MRI of my brain. You're experiencing brain fog, not fatigue, but I wonder whether an MRI of your brain might be a good idea, just to rule out some possible issues.