Well, it’s been just over a year since I’ve had a dream. That’s right kids, rem sleep at 6% which is deadly, it’s like being handed a diagnosis for early onstage Alzheimer’s disease. For what little time I have left This is what I have to look forward to, cognitive decline, inability to control or regulate emotions(read here easily angered and upset) and finally dementia.
And if anyone thinks I’m sticking around for that ride, lol nope.
So before I decide when and how to kill myself, thought I would ask, did anyone figure out another way? My tongue isn’t the problem, The osa is not treatable with surgery, I just got old. The cpap has done nothing but wake me constantly whenever i have csa. Being a mouth breather at night and these horrible masks that seem to be ok for everyone else but are hell for me due to bad skin have also been a problem. As yet I have been given no reason why am having csa but pretty sure my sleep doc wants to blame just about everything on medications I’ve taken for a decade with no problems. Yeah, about 5 months to get into sleep lab which was a nightmare and honestly only succeeded in sleeping one night of 3 in lab because I was stoned to the gills.
After a year of no rem sleep, I’m ready to tell god he can’t fire me because I quit. This bs is not what I signed up for. So, any actual success stories before i become another statistic?
Hi, It sounds like you’ve been through a really challenging experience, and it’s understandable to feel frustrated and overwhelmed given your symptoms and treatment journey. Central Sleep Apnea (CSA) can be complex and sometimes harder to manage than obstructive sleep apnea. It’s not uncommon for people with CSA to have disrupted sleep stages, including reduced REM sleep, which can affect cognitive and emotional health.
Treatment for CSA often requires a tailored approach — sometimes involving adaptive servo-ventilation (ASV) devices, careful medication review, or addressing underlying health conditions. Mask discomfort and skin irritation are also common issues, and there may be alternative mask options or strategies to improve comfort.
While CSA can be difficult to treat, some patients do find improvements with adjustments to therapy or additional medical support. It’s important to continue working closely with your healthcare providers to explore all possible options.
Your mental and emotional well-being is equally important. If you’re feeling hopeless or struggling with thoughts of self-harm, reaching out for support from a mental health professional or crisis counselor can make a big difference.
You’re not alone, and many people facing tough sleep challenges have found paths to better quality of life through persistence and support
I don’t know if you ever tried a mask liner to help with your mask fit. At least, for me, it became necessary to use them (I am going to attempt to give you a link to the specific kind I would recommend). I only needed them when I needed to start using a full face mask. They reduced the leaking around my mouth and my nose and it changed my life, along with getting an adjustable bed frame and mattress so that I was able to elevate my head and legs and remain on my back with minimal movement throughout the night. I know it’s not easy for everyone to get a new mattress, but my parents got me the new one with the adjustable bed frame for Christmas 2022.
I had minimal REM sleep and had no memory of any dreams starting in December 2015 (which is when I started using a CPAP) and just in the last couple of months, I have remembered maybe two dreams, which is amazing. It’s also odd because I stopped using my CPAP last July and this January was officially undiagnosed with sleep apnea due to the amount of weight I’ve lost (almost half my highest body weight which was in 2015. I did start a medication recently that seems to have increased my REM sleep as well as my overall amount of sleep. I had struggled with insomnia for about 12 years, trying different medications. There is a newer class of medication, specifically for insomnia, called orexin receptor antagonists and these have been amazing for my insomnia.
But here’s the website link for the mask liners that really helped with my leaking from my CPAP full face mask. Mask Liners
I wish you the best and I urge you to hang in there. I have also struggled with depression and feeling pretty hopeless at times and still do, though I started an antidepressant last year that has helped me with my ability to concentrate (I hadn’t realized how much my anxiety, which the antidepressant also helps, was disturbing my ability to concentrate for about 6 years). I can read books again, which was always my favorite activity, until I lost the ability to concentrate. But thankfully my medication has given me back the thing I enjoy most. There is always hope, especially when you reach out.
Here is something that you have not mentioned nor has anybody else. You should investigate a system called remede. That’s spelled correctly. This system is an implanted device think something like a pacemaker, that stimulates your phrenic nerve. This is the nerve that tells your diaphragm to contract so that you breathe properly. I don’t know where you live but I currently have a consult arranged at Beth Israel hospital near Boston. This is free. You can do the same. Google the name, and I’m sure you’ll be able to find where you can get a consult. Good luck.
Chronic sleep deprivation is torture. I’m there too, though not from CSA. My apnea is extremely mild and treated well with a dental device. But I do feel your pain because I get up every morning feeling like I’ve been at war all night. I think the problem is untreated dysautonomia and I’m looking for help with it. My thought for you is find a doctor who cares enough to really understand your situation and find treatment that helps you. I couldn’t sleep well with a CPAP either. But there are some smart, caring doctors and you deserve good treatment. So persevere and get yourself that help. Keep talking about it too.
