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Joined Oct 2018
Joined Oct 2018

Would the long-term health effects of UARS be similar to that of someone with mild sleep apnea? I'm quite certain that I've dealt with this since before I was a teenager. My sleep was always awful, I always wanted to stay up late and had trouble going to bed earlier, had trouble focusing in latter elementary school and high school. The school work didn't make sense. Some of the stuff at jobs didn't make sense sometimes, but I would make myself get good enough at it that it was like second nature so that I wouldn't mess up as much or at all. Even if I ride as a passenger in a car, within minutes I'll get sleepy from the bumps and such on the road. I have ridden on 15-20 minute trips before with a relative and literally went to sleep in the passenger seat and they'd tell me to wake up when we got home. I would just get so sleepy that I couldn't help it. I fall asleep in front of my computer at home. My sensitivities to sounds (pages flipping, watching people perform tasks, relaxing sounds, etc.) seem much higher than everyone that I have come across. Yet I don't think I have anything like Narcolepsy. My cognition for driving a vehicle definitely isn't there enough, however, even though I can operate 40-foot industrial machines at work with no problem during the day. This also puzzles me. Exercising - stuff like pushups - causes my entire body to shake rapidly. I have been unable to find the source of this. I suspect that my general light "shakes" that I've had since I was a kid may just be benign tremors, but the violent shakes when exercising seems to be like chasing the wind. I don't see other people having that when they work out. I'm starting to wonder if I haven't damaged something in my brain or neurologically due to lack of sleep over all of these years. :-/

"Dental devices and surgery are also options, but I recall you have been down that road already."

Yep, had the sinus surgery and that did improve the breathing, but not the sleeping apart from the fact that I don't breathe as loudly when I sleep and it doesn't take as long to get a breath in or out. There is a "sleep apnea" surgery aka UVVV (Uvulopalatopharyngoplasty) where they scrape away tissue from the throat and/or remodel it. Very dangerous surgery and usually doesn't help much, if at all. A coworker's husband had it and nearly bled to death after his stitches in his throat popped loose. My brother had something similar happen to him where the stitches popped loose, as well. Dental devices...they seem to cause even worse TMJ for a lot of people and also they definitely move teeth to the point of making them crooked for a lot of people. I've had a ton of dental work in the past, so I don't want to mess all of that up.

I'll start researching sleep labs around my area and figure out which ones can check for UARS. There is some kind of test that some sleep clinics can do to check the strength of your esophagus/airway using a tube. They cram a tube down your throat and do some sort of pressure test or something like that. I saw a video where a little girl had that done before her actual sleep test and they stuck a tube so many times into her throat that it started bleeding and they abandoned the test.

I'm also wondering if a nasal pillow mask would try to deviate my septum again due to the pressure of something in my nose pushing on it. I think one side of the incision is still healing even though the surgery was in July and the ENT doc that I have seen a number of times after the surgery said that's pretty normal and it can take up to a year to heal completely.

Not so sure that I can just yet...maybe not seizures specifically, but something weird is going on with my body neurologically and is mixed with other sleep apnea-like symptoms. If I had a full night of sleep, those numbers would likely be considerably higher.

What kind of treatment did you get for your silent seizures? I do feel "less jumpy" when I sleep better/longer to make up for the arousals, but I still had the odd jumps and jerks throughout the day with no rhyme or reason when doing daily tasks. My physical therapist noticed them when I was getting treated for my tibial torsion (leg bones are twisted outwards, causing me to toe-out a bit more than normal when walking). She wanted me to get it checked and noted my higher than normal pulse rate when exercising. Not to mention I fainted on the table during a blood draw at a clinic for about 15 minutes at the beginning of the year. Never fainted from needles or a blood draw. I was exhausted, walking 5-6 miles at work, had not eaten much that morning, skipped lunch and went to the doctor and that happened. They spilled the blood all over me and I woke up with my left arm numb from the blood pressure cuff and I felt tingly all over. Blood pressure was 60/60 and 52bpm on the monitor in front of me. The doctor literally tried to refer me to a psychiatrist to get meds for "anxiety" to suppress those symptoms, then argued with the nurses about my vitals while I was basically halfway dead. So I didn't get any answers from that episode. I had never had that happen and it seemed to be from pure exhaustion.

Went to my doctor and got another blood draw a day or two later and not so much as a fainting spell, so there are some weird things going on with my body that they haven't figured out. There was a little speculation that my lack of sleep in younger years could have caused the minor tibial torsion due to lack of proper rest for the bones and muscles to develop properly. The surgeon said no to surgery and told me to deal with it and that I'd have aches and pains in various areas of my knees and legs for life. So they 'weren't sure' if lack of sleep contributed to it. Poor sleep for half of my life has definitely taken its toll on me. I'm so ready to get that next sleep study.

Following up on what seems like a never-ending chase. 36 year old male, 160 pounds. Very active/athletic. No known conditions. Over the course of this year:

Primary care doctor, had all kinds of blood work done, thyroid checked, etc. Nothing found. Had an MRI of the brain, requested by my primary care doc with nothing unusual. The MRI was read with a side-note that stated deviated septum.

Neurologist: They saw the jerks/minor tremors that I have had since I was a kid and asked if I have had an MRI of my back (I haven't). If I try to do sit-ups, the core of my body violently shakes sometimes when I'm directly in the middle of going up or coming back from the movement. Only at the middle point. That can also happen sometimes when lifting weights, but the shaking is more so the muscle itself that is being used. Since I was a kid, I have always been "jumpy" in the sense of my body over-reacting. If I was about to drop something, instead of the one arm/hand moving (like a "normal" person's reaction), my whole body would react and move. If I walk into a store and the heat/air conditioning directly over the entrance blew on my head, I would automatically want to jerk my head and whole body down as if I nearly hit my head. If I sit back in a seat and the back of my head unexpectedly touches the back of the seat, my body wants to "jerk forward" for some unknown reason. I want to say that the "jerks" come from my lower back/core region. No one has figured out what that is.

ENT doc saw the MRI and requested a CT scan of my sinuses, which resulted in turbinate reduction/deviated septum surgery in July. My breathing is better, but I wake up feeling flat out exhausted every morning. I have struggled with poor sleep, couldn't concentrate in school and still have trouble focusing enough to drive a vehicle at 36 years old. I bought a simple SPO2 monitor and my pulse rate and oxygen levels spike up and down after I have been asleep for typically 2-4 hours. Pulse rate can go up above 100bpm and SPO2 goes down to and bounces back from the lower 90's back up into the upper 90's throughout the night. Something is clearly going on.

I had an in-lab sleep study earlier in the year, with only 2.75 hours of sleep. Of that, just a handful of minutes of REM sleep were present, so they never saw the full REM-side of things where everything seems to go wrong. There was a lot wrong with that sleep facility, the staff acted weird, the bed was hard, pillow was too tall, etc. They should have told me to take a couple of melatonin before I arrived, as well. The "first night effect" may have also been a contributor.

My brain is so tired of being tired that it now instantly tries to figure out what is going on the split second I wake. I thought my airway was closing or my tongue was falling back when sleeping on my back. Then I started feeling like it was doing it when I was on my stomach and side, too. Other times, it literally feels like I'm "too tired to breathe" like my lungs aren't wanting to take full breaths (unless I concentrate on breathing more deeply) the more I relax when I'm laying on my back. That could just be because I'm so exhausted, however. Then there are times like this morning when I woke up because my head and body "jerked" me awake with like 4-5 rapid-fire neurological jerks all done within a few seconds. I'm just getting to my wits' end and don't know what to do now. They do not seem to be hypnic jerks, they seem more like myoclonic or some other type of neurological jerk. Nothing about that was noted in the previous sleep study. No trial of CPAP. I'd have to buy it and if it is neurologically-related and doesn't help, I'll waste hundreds of dollars.

I'm wondering if those who work in the sleep field can recommend any neurological suggestions for me to consider that could interrupt my sleep. I'm started to wonder if there isn't something neurologically going on that a CPAP may not correct. I'm planning another in-lab sleep study after my insurance kicks in at the first of the year so that I can throw money towards my deductible for next year. What kind of conditions would cause my head and body to "jerk" away multiple times like that within a few seconds? There's no telling how many times I do that each night. That may very well be why I'm exhausted.

Sleep results from the March 2018 sleep study:

Hmm, that's odd. I've never had any type of ADHD diagnosis. Did a 30+ question quick test online and it only had 13%, so very negative. I don't exhibit any of the potential symptoms, either.

Even if I take two melatonins beforehand and it makes me absolutely sleepy, I'll wake up feeling like I'm just going to bed. I may worry a little here and there about a few things, but I don't think it is anxiety. Something is physically happening during the night to make those oxygen levels and heart rate bounce up and down and I just can't quite put my finger on exactly what it is. What I do know is that I can't spend the rest of my life not driving because I'm tired, so I'm going to have to figure out something rather quickly. I can do complex tasks at home, type 100 words per minute on the computer, play games with a ton of multitasking, etc. I can do tasks around the house, go work a long day at work and get stuff done out of habit once I'm used to them, but I can't "focus" while driving. My cognition just isn't there for that. I have no idea why. I seem to be able to do everything else fine (apart from being tired and wanting to go to sleep while sitting) but driving. I consider myself a risk because of that and willfully do not drive so that I'm not putting myself or anyone else's life in danger. Until I start feeling like the active 30-something that I actually am, I have determined to not drive anymore. I lift weights, not overweight, no known health issues other than fatigue. It is definitely happening in my deep sleep and I'm popping awake sometimes rapid-fire and seconds apart.

My body has a habit of failing to turn off until sometimes after midnight. Attempts over the years to "reset" my sleep schedule have failed miserably. However, it definitely isn't resting well enough no matter how much I sleep. I get up in the morning and feel exhausted. Eventually it will progress and I'll be tired through about mid-day. In the later afternoon, I'll start picking up energy and by late afternoon or early night, I'm wanting to something like weight lifting (have a home gym in my room). Then after that I'll be a little tired. I'm sleepy by 11pm or 12am, but my body doesn't want to officially go to sleep around those times. Even if I go to bed earlier, I'll have just have more of those awakenings and I'll feel just as bad (or sometimes worse) when I try to sleep 8-10 hours compared to something like 6 hours. I presume that it is because I'm getting less time in deep sleep, but still resting some in other stages. I love sleep, but with issues like that, it is a little scary to me because it makes me wonder about health problems down the road if I can't figure out what it is.