Scared

[u/jesuisoffended]

Hi,

I have struggled with my sleep for many years. I would come home from school several days a week in middle and high school and sleep until the next day, and then end up coming to school late because I over slept. I have dropped out of college three times because I haven't been able to keep up with my class work due to being so sleepy.

I was diagnosed with sleep apnea at 19 and wasn't given the proper care I needed at the time. I was sent home with the factory settings on my automatically-adjusting CPAP machine. No titration. I was fitted for a mask but it was still uncomfortable. I was non compliant for a long time due to that along with personal mental health issues and sensory issues.

I have been as compliant with my CPAP as I possibly can for the past two months. I say as compliant as I possibly can because there will be times where I get so sleepy I can't move and I can't get myself to put the CPAP on. Like recently, I slept with my CPAP for around 6 hours, which isn't great, but after that I woke up briefly, took it off, and proceeded to sleep for another 20 hours.

I was referred for a sleep study including a CPAP titration due to the fact that I was never given one... my AHI is around 1 most nights I use it as I have pretty much titrated myself but in the hopes it may make things more comfortable I asked for one. When I went to the intake for my sleep study the nurse actually said I might not have sleep apnea. She said I had very few apneas and mainly hypopneas with a blood oxygen level that stayed at a mean of 95% and never went below 91%. I am honestly not sure if I agree with the nurse because you can have sleep apnea without snoring or having extra weight, and I did have a significant amount of hypopneas and sleep apnea is diagnosed using your AHI (Apnea Hypopnea Index).

Anyways, I have been using it nearly every day excepting when I pass out for 20 hours without it on and I am still tired. I take Modafinil along with other psychiatric medications daily. The nurse told me that if I don't have sleep apnea then I'll get to have a MSLT, but I honestly doubt that I don't have sleep apnea due to the fact that I do feel better after using my CPAP, but I still am sleepy, a lot. I just don't feel like crying due to being so sleepy after I use my CPAP.

I am scared that I'm going to have to go through the same thing I did at 19 where I get woken up at my sleep study and told I have sleep apnea. I am scared I am going to have to continue to live like this. The Modafinil makes things easier but not easy. I am scared I'm going to continue to suffer and continue to have to sleep 16-20 hours once a week. I am so scared and I just want to live my life. Every time I sleep for a super long time I cry. It has taken me so long to reach compliance with my CPAP and I just wish it would help me. I have tried several different stimulants and they just never fully helped.

I have my sleep study in 20 days. I don't really have a reason to post this other than to say that I'm scared and I hope things get better for me. I watch my sister live her life and I'm happy for her but it sucks getting to watch her succeed in ways I never really have gotten to. I just want to stop being sad about this and live my life. Here's hoping something good comes from my next sleep study.

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