Low AHI but still lightheaded dizzy sleepy fatigued

[omar]

Been readings lots of posts on various topics for weeks because my symptoms have become unbearable. It's actually quite exhausting trying to understand everything. I am truly amazed that everyone seems to have so much energy dealing their sleep apnea.

I was diagnosed in 2010 with mild sleep apnea but it didn't bother me so much. In 2013 I was prescribed a mouth piece that seemed effective for a few years. Things got worse so in 2017 I started using a Cpap device. Each year my excess daytime sleepiness and fatigue has been getting worse. Cpap stopped being effective over a year ago. I regularly rip off the mask because I can't breathe gasping for air. I feel awful every day and have very little energy to do anything. I have constant dizziness, lightheaded, headaches, off balance, can't think properly and lack focus, need to take multiple naps to function. Life sucks giving me constant mood swings, anxiety, depression. I dread going to sleep because I actually feel worse when I wake up.

My AHI scores are under 1 most of the time with over 90% compliance and 7-9hours of sleep. Doctors tell me it's not my apnea had multiple sleep tests. No health problems no medications. Too fatigued and tired to exercise.

After about a year of complaining I finally tested an ASV device for a week and felt much better. I dreamt for the first time in over a year. I asked my doctors for a prescription but they said no because it's a ventilator for patients with serious lung problems.

I've been searching for solutions but have not found any. Lots of people with similar symptoms but nobody seems to have a solution. Lots of repeated topics that are unresolved. What happens to all those suffering individuals that just disappear?

Please share your insights about suitable Ivaps, AutoEpap, ASV devices. I am also interested in surgeries like tonsillectomy, adenoidectomy, etc to help my breathing.

Although I get in trouble with my sleep therapists I've been tweaking my settings for about 2 years and nothing really changes. Pressures range from 8-12. Epr has little effect. Ramp off. Increasing pressures too high makes me feel worse. Been looking at my sleep data but don't see anything significant except my expiratory waveform is not smooth but maybe that is normal?

Your help is greatly appreciated.

[Miss Emerita]

Omar, your symptoms sound really rough. Have you been examined by a pulmonologist and an ENT doctor?

I know the experts on the forum will do what they can to help you. They would probably find it useful to see a typical Oscar chart. Here’s where to get the Oscar software:

https://www.sleepfiles.com/OSCAR/

Best to read the guide before you get going. To use the software, you will need to import the data that are on the SD card in your machine. If there is no card in there, get one—nothing fancy needed. Also get an SD card reader if one isn’t built into your laptop or desktop.

Before you take a picture of a Daily chart, please hide the calendar and pie chart on the left. That way other important information will be in your screen shot. Stack your graphs like this:

Events
Flow rate
Pressure
Leaks
Flow limitations
Snores.

This will help the experts see the information they need at a glance.

[USMCVet]

Do you have a lot of stress in your life? I felt similar things and pretty sure it was a lot of stress. I'm still tired but my anxiety and lightheadedness, dizziness, headaches have gone away after getting rid of my big stressors.

[zonker]

Omar, your symptoms sound really rough. Have you been examined by a pulmonologist and an ENT doctor?

I know the experts on the forum will do what they can to help you. They would probably find it useful to see a typical Oscar chart. Here’s where to get the Oscar software:

https://www.sleepfiles.com/OSCAR/

Best to read the guide before you get going. To use the software, you will need to import the data that are on the SD card in your machine. If there is no card in there, get one—nothing fancy needed. Also get an SD card reader if one isn’t built into your laptop or desktop.

Before you take a picture of a Daily chart, please hide the calendar and pie chart on the left. That way other important information will be in your screen shot. Stack your graphs like this:

Events
Flow rate
Pressure
Leaks
Flow limitations
Snores.

This will help the experts see the information they need at a glance.

dang it, that's a well composed reply! i may have to steal it and start using it myself.

[Miss Emerita]

Oh, you are too kind, dear sir! And nothing can beat “Welcome to the...” (I will leave that to you!)

[omar]

@Miss Emerita
I have been seen by both pulmonologist and ENT doctor. They say I'm fine nothing wrong.

[omar]

@USMCVet
I would say I have low stress but no one is stress free. My work life and family life is not great though.

[omar]

Are there any drugs to give me energy and reduce sleepiness?

I need medications to help me function. I'm pretty useless as is. It's really humiliating and embarrassing to be honest.

@Sluggish seems to have very similar experiences maybe I should get in touch.

[zonker]

Are there any drugs to give me energy and reduce sleepiness?

I need medications to help me function. I'm pretty useless as is. It's really humiliating and embarrassing to be honest.

@Sluggish seems to have very similar experiences maybe I should get in touch.

when you get the chance, please download oscar and post some charts. it may be that while you are under 1.0 for ahi, you might not be optimized for the best sleep you can get.

i'm not a big fan of drugs, so i can't answer that. perhaps someone will come along directly who can.

good luck!

[omar]

@zonker
How do you optimIze for best sleep?
I've been increasing pressures with little effect.

Does anyone know how to get a bipap and asv device without prescriptions?

[zonker]

@zonker
How do you optimIze for best sleep?
I've been increasing pressures with little effect.

Does anyone know how to get a bipap and asv device without prescriptions?

that optimization is different for each one of us. what will work for you won't work for me and vice versa. the only way you can find out how to do it for YOU is to download oscar and post some charts.

once the experts see what is going on with you, they will be able to offer suggestions tailored to your situation.

i don't think there is any need to jump to more expensive bilevel or asv machines until you exhausted all the possibilities of your machine first.

post some charts and we can go from there.

[zoocrewphoto]

My first thought is that your cpap machine is set too low. You mention taking the mask off, gasping for air. That happens with a lot of people when the machine is set for 4 or 5, and it doesn't feel like enough. It is possible that when you tried out the asv, it was set with a higher minimum pressure, and that is why you liked it more. The asv machines are very expensive, and they are intended for specific problems.

I would recommend that you raise your minimum pressure to at least 6, and see if you feel a bit better. And post some graphs of a typical night. We can help you get the current machine going at more ideal settings for YOU. Most doctors really don't understand how the settings affect our ability to sleep well. They just look at ahi and hours of use.

[omar]

@zoocrewphoto
My min pressure is 8. I listed my settings above. Been increasing minimum from 8-12 but it has little effect. Higher pressures disturb my sleep. Based on my sleep reports my pressures only vary 9-11. On bipap/asv EPAP was set to lowest setting 4.

What else can I do? I felt better on bipap and asv. Any reasons why? What does the data say?

Thanks for you help!

Capture1.PNG (63.71 KiB) Viewed 2906 times

Capture2.PNG (56.2 KiB) Viewed 2906 times

[omar]

Here is an earlier date where max pressure was 12. I've had min pressure set at 8 for over a year. Currently it is set at 10. I do see more CA events but according to therapists they are not significant. Some days I have more leaks but also not significant according to therapists.

Capture3.PNG (69.03 KiB) Viewed 2895 times

Capture4.PNG (58.18 KiB) Viewed 2895 times

[omar]

Could the constant air pressures throughout the night be irritating my inner ear, throat, lungs that result in lightheaded, dizzy, off-balance feelings?

I felt the bipap/asv devices had a more natural breathing pattern. Cpap therapy seems very rough and rudimentary.