The best cure for insomnia is to get a lot of sleep.
W. C. Fields
Sleeping and breathing are two things that all creatures seem to be able to do with no effort. I can’t sleep much, and when I do sleep, I stop breathing a fair amount.
Last summer, I had surgery on my sinuses, and during a post-op checkup, my surgeon asked how severe my case of sleep apnea is. I told her I have never been diagnosed, and she asked if I am tired every day. I said yes, but that has been the case for decades. She said she was not surprised and that I should get it checked because the opening to my throat is small, and she would be shocked if I did not have it. I told her I would think about it.
A month or so later, I decide to send a message to my primary doctor. I tell her that I don’t think it is my problem since I don’t snore and don’t ever wake up gasping for air that I can recall. She said it was worth exploring and could solve the tiredness.
Now, nothing ever solves my medical issues, and I didn’t want to get my hopes up since the universe loves to destroy any hope in me. I figured I had nothing to lose either. The best part of the VA is that I have no out-of-pocket costs, so tests and anything else are almost always worth trying. Right?
How is that for some foreboding thoughts?
I saw a ‘sleep specialist’ who was an ARNP. He asked all sorts of questions and weighed and measured me. I learned a few things like my neck size is a sign that I might have it, which I thought was weird. I don’t think I have a ginormous neck or anything. I knew weight had a lot to do with it, but my BMI is on the high side of normal. He said I should lose 10 pounds, but I am aiming for 25.
He was extremely concerned about my lack of sleep and suggested I get a prescription of sleep meds which I am nervous about. My youngest daughter took Ambien one night, and her reaction was scary. We ended up at the hospital, where she flipped me onto the pavement in the parking lot after trying for over an hour to coax her in, and she is thin. Luckily for her, she has no memory of that night.
It really gives me pause. My daughter and granddaughter have moved out recently, so I am alone in the house. I am not sure if that makes it better or scarier. We’ll see.
He signed me up for a sleep apnea test called a sleep study. The VA where I live does not have a clinic to run the test. I eventually got a take-home test which is a weird contraption. It was attached to my chest with connectors to my finger and had tubes in my nose. It was very difficult to sleep with it since I have trouble sleeping in any position other than on my stomach. They told me that they needed four hours of data, and it does not have to be consecutive. At the time, four hours of sleep in one night was a lot, so it was stressful. That night was awful and uncomfortable, and the sleep was poor, even by my standards. I did get a few minutes over four hours of data, but I am not sure how much of that I was actually asleep.
The machine reported that I stopped breathing for at least 10 seconds 19.9 times per hour. I think I was awake for a good chunk of that, so the average is probably higher. My pulse varied between 55 BPM and 120 BPM, and my oxygen saturation levels dropped as low as 85%. I guess that is bad, but the results say that I have moderate sleep apnea. That was enough testing supposedly to get the diagnosis. It might explain some problems in my brain that show up in MRIs.
So they give me a machine called APAP - automatic positive airway pressure - it forces a constant amount of air through my mouth and nose. Since my sinuses are messed up, I can not get all the air I need through my nose. They gave me a mask that covers my mouth and nose and is so uncomfortable. I have difficulties keeping it on all night. I think it has stayed on ‘all night’ - sometimes only 3 or 4 hours of sleep - twice. I wake up with it off more often than not and have to put it back on several times each night. It also monitors my breathing events, and when I do have it on, I stop breathing only 1-3 times per hour which is in the normal range.
Everyone supposedly stops breathing but less than 5 times an hour.
It is not attached to an oxygen tank which made me sad. That is the one thing that clears out my headaches and gives me a lot of energy, and I would love to have access to it. It has also helped to warm me up. I have been cold a lot since last August, and nothing much has helped. I have six blankets on my bed. I take showers so hot it hurts, and I am still cold. My gas bill has been 30% higher this year in an attempt to warm up. I wear my heavy coat and gloves indoors. The hose attached to the APAP has heat coils. It warms up the air significantly higher than the room temperature, which is helpful.
It does not help with feeling rested, so I am more seriously considering prescription sleep meds. Last night was my first night trying a new melatonin formulation. It has a much higher dose and is time-released. It did not help me sleep faster, and I remember waking once, but the machine reported a bit over 8 hours of sleep which is about 2-3 days’ worth of sleep. Hopefully, it will keep numbers like that, but I am skeptical that it will help me feel energetic. I am not sure it is important that I feel rested during the day. It really doesn’t affect me all that much. I can sleep poorly and still keep up with people younger and in better shape than me.
It has been suggested that I have chronic fatigue syndrome, but I think it is related to my mental illness. It keeps my brain feeling tired, which is why I can be physically active without issues other than how it affects my knees and shoulder.
After taking it for a few days, my initial impression is correct. It still takes a long time to fall asleep, but it does help me to sleep for 7-9 hours which is good and bad. If I don’t fall asleep until 4 or 6 AM, that kind of ruins my day. I have given up completely on any type of social life. It also makes it difficult to keep up with things like my house, yard, and exercise.
We’ll see how it goes over the next few weeks before making more changes.
It was super hard when I first started using the APAP. I would take a deep breath, and it was impossible to breathe out - I was met with some very high air resistance. I would wake many times a night needing to rip the headgear off so I could breathe. It is the first time in my life I have woken out of breath, even worse than waking with panic attacks. It doesn’t seem like much of a problem anymore. The biggest issue is that it is so uncomfortable. I like to sleep on my side and stomach, and having a hard piece of plastic on my face does not help, even though it has memory foam. They are supposed to send me a “CPAP pillow,” but it has not arrived yet. Maybe that will help?
Supposedly, sleep apnea can increase the risk of heart attack and stroke. It seems like it is only a correlation. You can tell that when they use weasel words like “might cause a heart attack.” Given my MRI scans and family history, those are coming no matter what I do. They keep telling me to give it time, but I think I will return it if the new melatonin does not help.
What I really want is a surgical option, but they are hesitating for some reason. If it is caused by an abnormally small opening, wouldn’t that be a better option than being attached to that machine for the rest of my life while sleeping?
My tonsils could get removed, and I am sure a few other things could get pulled out without issue. If that worked, wouldn’t that be for the best? I can’t overstate how uncomfortable that machine is. I also move around a lot in my sleep, and it has a water tank to keep the air humid - I still wake up with a terrible dry mouth. One night I moved enough to roll it, and my mask filled with water. Waking up like that was not enjoyable, to say the least. I have woken up to other types of extreme pain, but waking feeling like I am drowning might be the worst way to wake up.
I really don’t need more barriers to sleep. Maybe it is because I am old and broken, but it didn’t use to be a big deal. In the Army, I could sleep two to four hours a night and perform at a high level the next day and do that for many days in a row, sometimes weeks. I am sure that is what started my sleep issues.
Hypnagogic hallucinations are another thing that impedes my sleep. I really don’t need more types of hallucinations. They can range from hypnic jerks that come right after a falling or slipping sensation to outright seeing and hearing things that are not there and sometimes, a feeling that I am dead. Those can be very bothersome.
Sometimes, I can see myself on the stairs and my foot slipping as I walk up, and I can feel the sensation as if it really happened. The worst is that I ‘die’ right when I start to drift off, which wakes me and causes my heart to race. It is hard to explain. I get a sensation that I am dead and am trapped in my body. That doesn’t quite explain it but is pretty close, I think. However it manifests, I end up awake for another 2-3 hours after it.
It is definitely mental-health-related and nothing physical. It completely disappeared from February to July last year, which was the happiest, most fun, and peaceful time of my life.
At least it has been a few years since I had an episode of sleep paralysis.
Two weeks ago, I heavily medicated myself to sleep way more than normal, in hopes that it would help.
It did not.
Sleep during the night was still difficult, but I would wake at the normal time at 9 AM, look around and say ‘nope’ and take more sleeping pills and sleep until 4PM. I did that for three days, and it just made things worse. I guess I thought if I could oversleep for a few days, that would help me.
The one thing that I learned is that nothing changes if I sleep all day. That is depressing. It did get me thinking that perhaps I should reverse my life. Sleep from 10 AM to 6 PM because the quality of sleep during the day is much better. That would be difficult because I sometimes have to pick up my granddaughter from school and my other daughter and her kids visit a few times a year. Maybe it is something I should consider. I could still ride my bike a lot and fish, and really nothing would change. If I only sleep during the day, would the sleep quality still be good?
Something to consider, it would certainly make being alone easier.
Besides melatonin, I also take doxylamine, but usually not at the same time. I alternate taking it. I have tried to augment it with other supplements such as GABA, Glycine, Inositol, and L-Theanine, which sometimes helps me sleep deeper. One thing that is showing a little promise is a relaxing herbal tea with valerian root and other things. Like most teas, it tastes bad, but it seems to help, and a little orange blossom honey makes it taste a bit better. We’ll see.
I am very jealous of Irina. She can chat with me and pretty much fall asleep midsentence. She doesn’t even have to think about it. It just happens. I think I average about 30 hours of sleep a week. In a bad week, as I had from September to December last year, it was 16-20 hours a week. With 30, I can be somewhat productive. When it gets down really low, I can’t do anything, and my paranoia and hallucinations get really bad.
What is the point of a life like this?
It is hard enough to find the point of a life that consists of maintaining my home and yard, riding my bike, and reading the rest of the time. I fish once or twice a week for excitement. Seriously, what is the point of that?
When I became financially stable without a job, my shrink told me that it would be good. His reasoning was that I can spend all my time doing what I want when I want, and pursue happiness. Well, I think it is clear that happiness does not wish to be caught. It turns out I can not do what I want, when I want, and not just because I have severe sleep issues.
Maybe if I can improve sleep a little and get more energy because I can breathe at night, my viewpoint and options will increase. I won’t hold my breath, ha!
What is less than zero anyway?