An interesting experience over the last six days. I am using my machine more and more each night, and sleeping longer and longer each bout. I still wake up once or twice during the night, but that’s better than 3-4. In terms of “incidences”, my AHI index of 124 which is way beyond severe apnea, is down to less than 5 (earlier it said .5, but that was an email typo of my results). So that’s the sleep side, which is the primary goal.
However, I have had fewer foggy incidents during the day too. My head is generally clearer. I have felt a bit light-headed a few times later at night, and my sleep cycle is still off. I did better the first week, better sleep routine, this past few nights I’ve been back to going to bed too late and getting up later in the morning. Which then messes me up during the day, particularly if I compensate with caffeine or more fluid intake after 9:00 at night. In other words, the sleep machine doesn’t cure having a stupid sleep routine that can still screw me up. Or, as Andrea puts it, one week won’t cure your sleep deficit of 47 years. Personally, I’m looking into declaring sleep bankruptcy, starting fresh. 🙂
At the same time, however, I have blood pressure issues from before. About 3 years ago, I was sick and jacked myself full of cold remedies for a week. By the weekend, I had a serious sore ear, and thought it was an infection or something. Nope, glands were fine too. I did however have a BP of 165/100 or so. Stroke range. Got the meds going, can’t take decogestants cuz part of how they work is jacking BP, and the meds keep me pretty even-keeled at 120/80ish. Sometimes 125, sometimes 85, but most of the time it is 120/80 plus a point or two.
However, a friend who was doing great with similar machine noted her BP was way down after a month. So I started tracking it immediately, worried about it going too low. Had a small checkup at doctor’s the other day (with an awesome doctor, surprisingly, too bad I probably can’t keep her there, it’s a teaching clinic), and my BP was down to 114/80 and 111/78. So we’re changing dosage of one of my meds. Definitely an encouraging sign.
There’s also an improvement I think in overall energy levels, but not sure quite how to explain it. Basically, I’m less abnormally tired/exhausted and more normally sleepyish? I’m not falling asleep or anything, but I do find myself yawning more than I did before. A very relaxed sleepy yawn rather than a tense over-tired haven’t slept yawn.
I’m not fog free, I’m not using the machine for a full sleep cycle, I’m not bouncing with energy and glowing as the picture of health, but it’s all going well. I have another three weeks before I go for my follow-up appointment but I’m moving from cautiously optimistic to relatively convinced there are strong treatment benefits if not yet an outright “cure” for my apnea.
The success has also had a few ripple effects on other goals — I’m more motivated to do basic exercise (walking, etc.), I bought a new weight scale with better precision for a guy of my weight/size, I’m tracking my sleep times in my phone tracker too. All seems to be moving forward.
Funny thing, I’m more excited to get off my BP meds so that I can take cold remedies again when I’m sick (I have a lot of trouble kicking things now without access to decongestants), but Andrea mentioned — “don’t forget alcohol again too!”. Since I’m such a lush, no doubt! 🙂
So I went to bed just before 11:00 last night, and fell asleep well enough after I got over my initial hyper-ventilating. I think I need to let my body relax a bit, settle for a minute or two before I put on the machine, maybe while it is warming up the water. Then I slept until after 1:00. That might not seem like much, but it was well over the 90 minute sleep cycle I normally have i.e. it pushed through it.
The problem was I felt like (a) I needed to go to the bathroom eventually / not urgently and (b) I had a tickle in the back of my throat I wasn’t able to clear. Took a break, got up, went to the washroom, And the tickle became reflux. Not sure if that was a reaction to swallowing too much air, or something else. Going to try clearing my throat more before I start tonight.
Went back to bed eventually, decided to try it again anyway, vomiting or not, and had no issues — slept again for more than 2 hours. So it’s working, and I slept more than the previous night with the machine (about 4 hours the first night, probably about 5 hours the second).
And I woke up this morning with my head the clearest it has been in months. I felt great. Until I got up and started doing stuff, and then some of the fuzzies came back in. And this evening I was really tired and partially two-headed again, but it held off longer than usual today, another encouraging sign. Plus my right jaw cracked this morning, releasing a lot of tension, which I think is because I haven’t been clenching and grinding as much either. Another bonus.
As noted yesterday (Nervous yet resolute), I picked up an APAP machine yesterday to see if it can help with my sleep apnea. I set it up last night, adjusted the straps on the head gear, filled up the water reservoir, adjusted pillows and setup of my night stand to accommodate everything, and gave it a whirl.
In the first couple of minutes, I felt like I was hyper-ventilating. Likely a combination of it being APAP not CPAP, so it actually ramps up from air pressure of “5” to a maximum of “16” for me (range is 0 to 20 for the machine, and in contrast with CPAP that just has steady number the whole time, mine will also decrease if I’m not needing the higher number), and that whole nervous thing I mentioned in the title of the post.
I waited a few minutes, tried again, got it set up, and waited. Wondered if I would be able to fall asleep with it on. Apparently I can. My wife came in a little while later and noticed (a) I was asleep, (b) I was lying on my back which is unusual as I’m a side sleeper and back sleeping makes me snore, and worsens apnea, and (c) I was sleeping completely peacefully with my mouth closed (there’s another first).
That lasted about 80 minutes or so and then I woke up. It felt like my headgear was squeezing my head too much — not so much a suction problem, more like the straps were too tight. Adjusted things, took a break for a bit, went to the washroom, reattached everything, good to go again. And slept for about 90 minutes. That’s my standard sleep cycle anyway.
I can’t remember if I tried for awhile without it then or later, but did another round in there for about 90 minutes or so, and eventually got up around 5:00 and went to the washroom again (I drank way too much water later in the evening that I would normally, I was dehydrated from dinner and trying the different headgear). I also took some medication about 3 hours later than normal, which always messes my sleep too.
Back to bed around 5:30 or so, tried again, and laid there for about 30-45 minutes before I packed it in. I was not going back to sleep. I felt fine, still “sleepy” but not “dead sleepy” as I am usually at that time.
Trying to assess preliminary results is foolish, but I’m going to do it anyway:
I was tired today, but more sleepy than exhausted, which is probably an improvement;
Oddly enough, I felt like I had an air-conditioning hang-over, or as if I had been on an airplane too long. It’s a really hard feeling to describe, but I feel almost two-headed — like my physical head and my subconscious mind are not perfectly aligned along the same axis. This has been going on for quite some time though, no apparent cause, and while it was worse today than it has been in awhile, it’s still within the normal realm of “me”;
My jaw was less sore today than usual, makes me think I might have avoided grinding somewhat too; and,
My right ear “popped” today — not a air pressure clear, more like my jaw cracked, which sounds almost like it’s in my ear when it happens … often if I have a pressure or tension headache, the pressure goes away or at least decreases significantly if I can get my ear / jaw to pop / crack. If not, I have to do TMJ-style massaging along my jawline to get the muscles to relax. I haven’t been able to get it crack in months, today the right one went no problem, and my left one felt like it was ready to go, just not there yet. An audible release they call it when it goes; relief is what I call it.
Overall, my first night with the machine wasn’t an unqualified success, but I didn’t feel horrible doing it, I did sleep with it on, not 100% of the time, but at least 50-60% which is a good start considering it takes some getting used to in terms of the air of course but also the head gear too.
My sleep study produced a more accurate “Apnea Hypopnea Index (AHI)” number, of course, as it has lots of sensors. The AHI is the number of incidents recorded per hour. Depending on the geographical area and who the governing council is, the standards are usually that < 5 incidents per hour is considered minimal or non-existent apnea. Mild would be 5-15 events per hour, moderate would be 15-30, and severe would be over 30. My official number from the whackjobs at the sleep clinic was 124. Severe severe severe why is he not dead yet apnea. According to the standards. However, first I’m not positive the sleep clinic was entirely reliable (low efficacy as per the previous post), and second, the woman teaching me the new machines was like, “Yeah, it’s high, but not anywhere near the highest, maybe above average but not big time.” Personally I think 2 per minute sounds like a lot from the original study.
The reason I mention it however is that the machine estimates how many you have based on the way you breathe in and out. It’s not as reliable as the sleep study, of course. But the machine knows when you’re inhaling and exhaling as it affects the amount of resistance it registers. And the machine comes with an SD card, and a modem to transmit my sleep data directly back to the company during the day. My numbers for last night? 0.5. A “half” of an event. I don’t even know what half an event is, but still, it basically registered me as having no apnea with the machine running and the air blowing in.
That’s pretty dang impressive.
I’ll keep at it. There are also some potential short-term benefits besides just better sleeping, including a small amount of weight loss (partly due to decreased bloating, metabolic improvements or more accurately, stopping things from screwing up your metabolism) and a reduction in blood pressure. I’m happy but a little nervous about my blood pressure potentially going down too far as I have meds that are supposed to regulate it low already, and the meds work pretty well. I’m going to monitor my BP twice a day for the next month or so, just to make sure nothing dramatic happens and my BP suddenly plummets without me knowing.
The only thing that presented a real challenge to me, and it’s a bit funny, is trying to yawn with the mask on my nose.
With the nose mask on, as soon as you open your mouth, there’s essentially a bit of a vapour lock as the air comes in your nose and out through your mouth and nothing goes down. Your mouth may even make a vibrating noise as it opens and closes a bit. Very disturbing. Anyway, I tried yawning and my mouth kind of blew an inverted raspberry (hard to explain, almost more vacuum in than blowing out as the vapour lock wants your mouth to slam back shut even as you try to open it). I asked the tech, she laughed and said, no, there were no special techniques she knew of to do it. I found out though that if I put up my hand and cover my mouth (like you would in polite company anyway), it creates enough of a shield for you to open your mouth without the machine clamping it shut or your lips/cheeks/mouth doing a concert. Doesn’t sound like much, but the alternative was very unsatisfying stifled yawns as I was getting really sleepy. 🙂
So I’m trying again tonight, hoping I can hold out to 11:00 or so to go to bed so I’m not awake at the crack of stupid. Wish me luck.
So I have always had interesting sleep patterns. Bouts of insomnia, bouts of oversleeping. Frequently waking up with a sore jaw because I’m a grinder. But apnea wasn’t really on my list of likely causes of sleep problems. Mostly cuz I’m fortunate enough to share my bed with someone familiar with sleep apnea and I wasn’t showing the regular signs of jerking awake, obstructed breathing, making choking noises in my sleep, or even restless leg syndrome of twitching while sleeping. Sure, I occasionally snore, but more so when I ended up on my back than my usual side.
Last January (2015), I headed off though for a sleep study. Really I thought I was mostly grinding, but open to seeing what other problems I might have that caused me to sleep so badly. Andrea had done a sleep test years before, so I was open to it. However, in the pre-meeting with the doctor for the first time, I had a less than stellar beginning. I filled out the patient history forms, blah blah blah, the doctor calls me in, he hasn’t read through them yet, and he starts to go through them with me. Thirty seconds in he basically tells me 50% of people have sleep apnea, he thinks I have severe apnea and I should not only do the sleep test but I can go ahead and book an appointment with a CPAP vendor. Really? You haven’t even read my forms or done the test but you’re already giving me my diagnosis? Based on what — the fact that I’m fat? Really? He even as I was leaving suggested a specific vendor I should go to…something, by the way, that I know violates just about every ethical standard there is for medicine because it shows up regularly as a frustration for patients. Like when I needed someone to do stuff for Jacob and they were reluctant to tell me which doctor or private specialist to go see, preferring to just give us the list and let us choose. Yet this guy had no trouble pointing to one, nudge, nudge, wink, wink.
Whatever, I went to the sleep study. I figured these people would be more clinically detached. Nope, the woman basically told me as soon as I walked in that I had sleep apnea, would need a machine for the rest of my life, etc. Did the sleep test with half the night with no machines and half the night with constant air pressure. I couldn’t tell the difference honestly. Didn’t seem to make any difference at all.
In the end, I didn’t follow up and tried other stuff over the last year. We got a new mattress which helped. I stopped having caffeine most days after 4:00 p.m., and tried cutting back more generally. A few other things. When I follow the regime, it helps; then I get busy, fall into old habits, and it doesn’t work. However, I was at a massage the one day, and I kind of dozed off for part of it. And the RMT asked me afterwards if I have a CPAP machine or not, cuz I was definitely stopping breathing while I was dozing. Good to know. Another RMT told me the same thing. Again, good to know, and oddly enough, I trust both of them farther than I could throw the quack I saw in the first place.
Fast-forward to the new year, I’ve been thinking of redoing the test with someone else, and I found out that a friend had used a company called Inspiration Medic and was really finding it to work out well in getting the right fit for the masks, etc. Encouraging. Partly because most people I know who have stories about CPAP machines or mouth devices fall into one of two camps — either it did nothing for them, and there was virtually no impact (often because they couldn’t get the right settings, but might have also been misdiagnosed too) OR they think it’s the greatest invention of all time and can’t believe they didn’t do it earlier. Most people I know have been in the first camp. Mild improvements at best.
But with the encouragement that someone got it to work well with Inspiration Medic, I set up an appointment last week for this week, got the sleep clinic to send over the paperwork with the settings, and I went tonight.
Finding the right mask is always the biggest challenge, with air pressure settings often the secondary problem. In my case, I qualify for APAP which instead of “Constant” air pressure I get “Auto” i.e. it ramps up when I seem to need it, and ramps down when I don’t. It’s more expensive than CPAP (of course) so the government only funds APAP if you meet the medical criteria in the sleep test. Great — I sucked bad enough that I qualify for APAP!
Tried three masks tonight, got a loaner unit, all set up, and with the mask on, Andrea can’t even hear it. Nice little machine. So tonight will be the first night. I may not make it the whole night the first night wearing the gear, but I’ll try.
I’m nervous, but resolute. Onward for the path to improved sleeping, I hope!
