Low AHI for years but tired and low SpO2 spikes down to 85%. Brain MRI abnormal

[MyronH]

Hey Guys. I haven't been here in awhile. I need some advice. I'm 52yo. I recently had a brain MRI and they compared it to one when I was 38yo. They said I had anomalies and white spots on my brain scattered. Also some brain atrophy going on, that was advanced for my age.

I have anxiety/panic disorder and treated for it. I had two episodes of DVT's and PE's in 2015 and 2018 and diagnosed with Factor V Leiden that makes me clot more. I was on Xarelto between those two times, but my doctor took me off and on baby asprin up until 2018 when I had the second DVT/PE. Now on maintenance dose Xarelto for life.

Sometimes during the day, I'll feel "foggy/tired", take SpO2 reading and it would be somewhere between 90-94%. My normal usual hovers around 94%, although it is weird. I get these "cold" spells where my body feels super cold, I take my reading and I'm at 100% constantly, until the cold spell goes away in an hour or two.

Anyway, going back to the chart below, my AHI is always low, with only a couple of 10-12 second CA's throughout the night. But my watch indicates my SpO2 goes down to 84-85% at times. I don't understand why! It has always been like this for years! My sleep doctor says all looks good and I have low AHI, and he doesn't know why my oxygen drops so rapidly to 85% just for a 10 second CA.

Anyway, I think this has been affecting my brain, and causing the atrophy, even though my family has a history of dementia/parkinsons. I think this oversight of my low SpO2 drops over the years has caused the atrophy and white matter spots.

I used to have a Contec device but the battery went out and it stopped working. I threw it away. The probe was bad too on it. But it too would always sound it's alarm at me to wake up when I put it to 85% alarm. The graphs would always show short drops to 85%.

Also when I fly, I have checked my oxygen with oximeter and it dips down to 90% or sometimes lower, for almost the whole flight. I have to take deep breaths to basically bring it up to even 95%. On my last flight, I had my friend try it, and his was basically normal at 95%. Also when I went to Arizona, I had a terrible first three days. I felt out of breath hiking around and even sluggish in my hotel. At night, my Contec said I was dropping to 80%, and one morning I woke up with raccoon/black eyes, due to the low oxygen. But after 3 days, I started feeling a little better. But it was a terrible experience. I drove to Flagstaff   and at it's higher elevation I felt even more out and while at a museum felt about to pass out. I had to get back in my car and drive back down to Sedona.

So I think I have several things going on here with oxygen deprivation where my body has some issue. But none of my doctors have any answers. My last sleep test was in 2018 so I'm thinking about getting another one, and see if they can monitor my SpO2 during the night.




   

[UnicornRider]

You need a continuous recording Pulse/Oximeter so you can monitor your own O2 status and you can print a historical report for your medical team.

There are several models out there.

I bought the Wellue Checkme O2 Max because:
   1.)  It has a 72 hour battery.
   2.)   It logs 4 sessions of 10 hours each, before it starts to write over the first of 4 sessions.
   3.)   It has a replaceable Ring element in case of breakage or failure.
   4.)   It will Bluetooth to my Iphone for data logging, instant read out display, audible and vibratory user defined alarms.
    5.)   It will Bluetooth to the Iphone as far away as the living room for remote monitoring.
    6.)   It has user defined audible and vibratory alarm on the ring/wrist assembly
     7.)   O2 Insight Pro software for Session print out and data logging
     8.)   Data can be imported to OSCAR for reporting on OSCAR's Daily, Overview and Statistics pages.
     9.)   We purchased one for my mother a month earlier, before I found out I needed to wear one also.

I have always restarted my Checkme O2 Max to coincide with the start of my ResMed, so sync's time for OSCAR import and so it does not restart in the middle of a sleep session. I down load data to my PC running O2 Insight Pro daily after a sleep session.

  During the daytime if my Checkme alarms I can get up and walk around, if it alarms at night someone monitoring from the living room will check on me.

      I wish you well

[stier52r043]

Hello MyronH,
Unfortunately I only understand German and have to use Google Translate to write to you.
I have been on CPAP care since 2014. Unfortunately, most doctors only work in their area of expertise and do not take other areas of expertise into account.
The biological body of living beings, whether human or animal, is a complex system.
I'm too small for my body weight :-) .
Since 2004 I have had to take beta blockers and ACE inhibitors to combat high blood pressure. There is also an anti-inflammatory drug for proctitis.
The anti-inflammatory drug (active ingredient sulfasalazine) also helps me against the effects of my osteoarthritis in all major joints.
Importantly, my prostate had to be reduced in size in 2021. But everything worked out well.

After the prostate operation, my AHI increased significantly, and facial pain from the CPAP mask was also a problem.

Due to arthritis pain and a mild disposition, a young doctor concluded that I may have secondary RLS and prescribed Pregabalin 75 mg.

My AHI then did what he wanted - but the SpO2 value remained good - the doctor liked it that way too - no problem for him.

Causes – no explanation?
So - after the prostate operation I should have checked a medication for drainage - how that works now.

Then I measured my blood pressure again at home - at the doctor it was 125 over 70 - everything was good - but after about 10 - 15 minutes of rest - in the evening in bed - blood pressure 74 over 49 and AHI max 30 AHI 8.9 x - OA max. 71 seconds.

So I left out the additional water pill because it was added in 2016 and then it worked with the blood pressure value.

Now I think I'm on the path to asking more questions, even if the gods in white are always pressed for time.

I wish you - find someone who doesn't just shrug their shoulders - e.g. a young doctor who is interested in a successful career!

Greetings from Leipzig – in Saxony

[Dormeo]

Do get a recording oximeter, as UnicornRider has advised. With the data you get from the oximeter, you will be in a better position to press your doctor(s) for help, including treatment or further testing.

Is your sleep doctor a neurologist? Did a neurologist order the MRI of your brain? Has the doctor who ordered the MRI had a conversation with you about how he or she interprets the results?

About high altitudes: they do drop O2 levels for many people whose bodies are used to a lower elevation. I now experience altitude problems even at 2500 feet -- poor sleep, dizziness, faintness, extreme reactions to alcohol, shortness of breath, the whole shebang. At any rate, the kind of experience you report is common.

[TechieHippie]

First, I'm sorry you are going through this. It's scary and challenging. Take care of yourself as best you can during this.

For whatever reason, your body is not regulating oxygen well and if it were me, I would ask for an immediate trial of supplemental oxygen while you get this figured out. Those levels aren't normal and I'm pretty sure you should qualify. You probably only need 1-2 L, maybe more during the night. You can get a simple adaptor tube that the o2 attaches into the BiPap.

I second the suggestion of the Checkme from Supplier #40 ASAP; the SleepU is great too if cost is an issue. You can wear the monitor both day and night except while charging. I suspect you are out of the realm of sleep doctors now, and probably need to bring in pulmonology. Wishing you luck and improving health.

Lisa