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Born with CSA - Sleepwalking - 09-19-2023
It is my belief that I’ve had CSA since I was born or at a very early age.
I was left back in kindergarten. The only explanation I received was that they said that I was, “not ready.” I believe the CSA was presenting like ADHD and maybe even a little on the Autism spectrum. In 2008, I was diagnosed with ADHD but the medication didn’t help (beacaue I didn’t truly have ADHD). I’ve taken an untimed IQ test and scored 160.
When I was 9 years old, I remember complaining to doctors about severe headaches often. No reason was found. Suffered most of my life with headaches 5-7 days per week, it has sent me to the emergency room a couple of times, 2 MRI’s of my brain, and no cause was ever found.
By around this time (9yo), I was already having sleeping issues. I would lay in bed unable to sleep. That would actual be the time my brain felt most alert. I would remember all of the things that I was supposed to tell my mother late at night after she was already sleeping.
Depression hit me hard starting in high school and didn’t let up until I started CPAP a couple of weeks ago. I still have a carving knife in my bathroom drawer, was going to sit in a warm bath a stab myself in the jugular, it is now left there for self defense only.
Around 20, after I ran myself over with my own car while I was diving it (swear! It’s a great story…I’ve also fallen off of a moving car), in the ambulance, they noticed my heart skipping beats often.
Most of my schooling was filled with progress reports and report cards stating “not working up to potential” or something similar. I’ve yawned excessively all of my life.
By around 23, I started having night sweats to the point that I’ve had to change all sheets and blankets, take off pajamas and have to dry myself of with a towel.
Around 25, I was eating in a restaurant with my mother and brother, I put my fork down and fell asleep at the table. I was diagnosed with mild sleep apnea (0-3) by the Stony Brook University Hospital Sleep Lab. CPAP was not recommended. Their big advice to me was to take a night job as they could see that I actually sleep better during the day. Around this time, I started smoking marijuana for the first time in my life. Now looking back, it’s my belief that the marijuana makes my apnea much worse which caused my life to fall apart causing a downward spiral. The three periods of my life that I’ve smoked marijuana all ended in a downward spiral to the point that I’ve walked away from my business twice.
I’ve been observed to stop breathing while sleeping at least 13 years ago. I just didn’t know about CSA and all of the different complaints that I’ve had given to doctors were just blown off.
There is much more to this story if you would like to know more. But the last thing I’d like to leave you with is that I nearly died from Covid. Hospitalized for 59 days and have had long Covid since. Ironically, having Covid allowed me to understand my CSA better because they are both ultimately oxygen issue.
I bring you this information because it is my wish to help others like me hopefully at a much younger age.
RE: Born with CSA - quiescence at last - 09-19-2023
Thanks for sharing, and welcome, and good luck. I wonder if you have ever noted OBSTRUCTIVE EVENTS, that your pipes collapse or that you snore at all. Air pressure "air stents" does not do alot to alleviate CSA, and you may find that something akin to a ventilator may be necessary. Please feel free to post a chart or two here togive us a look see at the battleground. There are some great folks here that have gone through issues like heavy CSA and can relate the steps you might need to take if insurance will be willing pay for part of the equipment charges.
QAL
RE: Born with CSA - Gideon - 09-20-2023
Welcome to the forum.
As a suggestion, think about getting a recording pulse-oximeter and record your oxygen levels overnight. You are correct in that those symptoms and your history of Covid/Long Covid it may reveal something. Do this for several nights then post your results here and we can look at them.
My wife was grossly misdiagnosed with, and treated for, Depression, when her problem was a growth in her throat at her vocal cords with an airway reduced to 10% of her normal. Not technically apnea, but definitely oxygen deprived. I can guarantee you do not have her condition, but you do have similar symptoms.
My hope would be that this would uncover something your medical team will followup on.
RE: Born with CSA - Sleepwalking - 09-20-2023
Thank you and you’re welcome QAL. I don’t have any data (need an sd card) and I’m not sure when I started snoring.
With having CSA and OSA, would the ASV PAP be the correct machine?
Anybody know if having long covid and still requiring oxygen at times, would that interfere with the diagnosis of CSA?
Not worried about any cost. My insurance should cover it, but I’d be willing to pay almost anything for the proper machine.
I stayed at my mother’s house Saturday night, she’s 80 with a memory of new information lasting only a few minutes (possibly white matter disease), she hid the CPAP and we spent 4 hours looking, my SpO2 went down to 82 while awake and I didn’t have a cannula to use just the oxygen concentrator alone. (I take the tube from the concentrator and stick it in the CPAP intake for oxygenated air which allows my SpO2 to be 95-99. Never pegged at 100.) The days prior to this, I was fully rested after just about 3 hours for 6 days in a row. Sunday night, without the CPAP, slept 8 hours and felt awful. I’ll pay.
RE: Born with CSA - Sleepwalking - 09-20-2023
Thank you Gideon, this gives me some comfort and hope. So sorry about your wife’s situation. Praying for you both.
I just started yesterday with the Checkme O2 Max, will post when I can.
Thank you
RE: Born with CSA - Gideon - 09-20-2023
you have a CPAP?
if so please update your profile and post your daily detailed charts from OSCAR. They will tell us a lot.
RE: Born with CSA - Sleepwalking - 09-20-2023
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RE: Born with CSA - Sleepwalking - 09-20-2023
Gideon,
I'm sorry, in my excitement, I messed something up.
I have a CPAP my brother gave me. It doesn't have an SD card. I have get out to buy one.
I was trying to post a report from Checkme O2 monitor.
I was using the CPAP and my SpO2 went down to 80%
RE: Born with CSA - Sleepwalking - 09-20-2023
Here’s the report from the Checkme O2 monitor. Feel asleep in the last 3rd of the report.
RE: Born with CSA - Gideon - 09-20-2023
I wouldn't care about the 80%, that only means to look closer. The significant stat is the 63.5 minutes less than 90% and the eyeball says much of that is at or below 88%. That is IMHO a significant issue.
Print this report for several days to prove it is not an outlier and develop a plan to work on this with your medical team. Under Medicare this qualifies you for overnight supplemental oxygen.
Was this with or without the CPAP.
Get an SD card TODAY and use it overnight and post your OSCAR charts and your new O2 stats.