The sleep clinic gave me some paper about 'sleepmapper.com' so I made an account but it didn't have nay data via the satellite modem, or however that little antenna connects (cellular 4G??). They sure didn't know. So I installed sleppmapper on my PC, popped the modem off and popped the SD into the USB adapter, and it said that it downloaded. But, on the sleepmapper site it still says "no data" so the heck with that I need my own software, and tomorrow I'll look around for some.
They diagnosed "severe" apnea. Probably undiagnosed for 30 years, until I started actually suffering sudden unconsciousness during the day at work.
The place that did the sleep study seems too tied into profits on the machines. There needs to be some separation there.
At least they gave me a decent bipap machine, which IMHO sure beats a CPAP. Why would anyone want a CPAP when these are available? And heck, they should be about $150, not ten or twenty times that! Get real!
My treatment story:
After 5 years without health insurance, I got a better job with insurance, and found a local family practice, and tried to make an appointment outside work hours. Got a "physician's assistant" who wrote down "old guy often feels sleepy" when I described "sudden unconsciousness while driving and at work." They, and nurse practitioners, are wonderful for 90% of common treatments, but need to stay out of the diagnosis arena they are not qualified for IMHO. So after I'm in trouble at work and trying to hold onto my new wonderful job I moved across the country for, I went back to the doctor's office and insisted I get seen...taking names. So it turns out they DO have a doctor on-staff on-site outside of work hours, it's just a secret unless you make a fuss. So he gives me some great "awareness" meds and a doctor's note for work and a prescription for a sleep study.
So the sleep study says I have severe apnea, 70+ apnea events an hour. That seems more than possible??? The masks in the study seem absolutely unbearable torture, and I consider whether death is looking more attractive.
So they can't control it with a CPAP. They go to BiPAP. I hate that I can't do anything while falling asleep with the huge mask on, can't enjoy music or see TV or the computer. This really sucks.
Then my personal machine comes in. I can't stand the big mask on my nose, they hurt an leak. Worse yet they feel like I'm re-breathing the air I just exhaled, and I need to breathe deeper just to get any air. So I chose a really small rig with little cushions that try to seal against your nostrils. If I open my mouth at all, my ears pop painfully. I can't exhale quickly, as the mask only passes a small amount of air.
I get home and try it the first nights. I have severe hay fever. I under go a long ritual to get my sinuses reasonably clear. As soon as I start using the BiPAP it's ticking the hair in my nose, the 'cushions' don't flow sufficient air, and I can't exhale quickly, only slowly. I sneeze and it's a mess. I cough and my ear drums pop. If I open my jaw, not even opening my mouth, and it pops my ears painfully. The next 3 days my right ear hurts, and there's a constant ringing in my ears. I turned down the humidifier to "2" so I wasn't always drowning in stuff dripping right at my nose.
Then it seemed to be working well for a night.
Then I woke up and it felt like somebody punched me in the nose and broke my nose. The nose and facial bones on my left side were in extreme pain. And...from the moment I woke up, that area seemed extremely COLD!
So I went to the family care place and got to see another doctor. She did nothing.
So Saturday I went back and said it was an emergency, because I needed to use the bipap and anything that interfered was serious.
The bipap changes pressure against the sinus tissues. It kind of squeezes them out like a sponge. Which is kind of cool, in that over the course of the night it really clears out your sinuses! But... it seemed to wring mine out too hard and caused injury. Very little blood though, mostly really thin water dripping from my nose for the next 2 or 3 days. That's my opinion, that this was caused by my allergies and the BiPAP. Doctor thought it was an infection. Well, they didn't do anything for my obvious ear infection but offered me antibiotics for my sinus allergies. They suggested I review the pressures with my other "sleep" doctor, so we might minimize these...problems or injuries or side effects.
I tried to see the "sleep" doctor associated with the sleep study place, and it was pretty much impossible, and then she's going on vacation so of course the doctor covering for her is booked.
I gave up, hacked the unit, and found out it's only 8 / 16. So I changed it to 8 / 15 and tonight I'll see how it does. Wish me luck.
08-18-2014, 11:26 PM
(This post was last modified: 08-18-2014, 11:27 PM by MAPnea.)
Oh, my, cyclecamper, you've had a terrible experience starting off with sleep therapy! But welcome to the forum and I'm certain someone more familiar with your machine will be along shortly to help you out. I know you must be totally frustrated and frightened that therapy might not work for you, but please hang in there!! You'll find help here.
Good luck tonight and let us know how you do.
08-18-2014, 11:27 PM
(This post was last modified: 08-18-2014, 11:35 PM by cyclecamper.)
Better flow with the large 'pillows' despite a petite nose.
Some side-effects: I have not had any 'visual migraines' since using the bipap (for about 5 years I had occasional blurred vision right in the middle of where I was looking, no central detail, only peripheral vision working). No more problems driving (amazing I drove from Long Beach California to Virginia without crashing). Still have trouble staying awake programming at work though. I can tell how long I'm out by how many lines or pages I type of the same letter. They call that automatic actions like sleepwalking but of course for me it's the auto-repeat feature of the keyboard. So lately I notice it's not just one letter I type while unconscious, I'm typing two or three, always in home position. Soon I may be able to do my entire job while unconscious, I think there are others with that goal exclusively.
And I'm using parts of my lungs that haven't been used in ages, due to some silicosis from past careers. It's been cleaning my lungs out too, occasionally hacking up some crud from 45 years ago when I was welding and smoking Cools 3rd shift, and doing sound jobs and smoking pot in the evenings, college calculus differential equations during the day.
I can remember my kids' birthdays.
And, at 60, the BiPAP has caused improvement in my erections!
But it better not rip up my sinuses again, or hurt my ears.
Anyone else have such serious sinus and ear issues at such low pressures? The ear problems seem to have more to do with keeping my eustachian tubes closed by keeping my jaw closed. However, if I open my jaw a bit and make my lower jaw protrude, it improves the airflow in my throat, so there's a conflict...open and protrude to reduce the apnea causes the BiPAP to blow hurt my eardrums. Part of this problem was probably caused by braces on my teeth in the 1960's before they had the turnbuckle plates that expand your palette. In those days when they needed room in your gums the only things they could do were to pull out teeth or pull the back ones back farther via a 'headgear' with rubber bands, which makes your jaw go back more and interfere with your throat and give you TMJ headaches and other problems like apnea. I also had a gas tank fall on my throat once, kind of crushing my larynx, but it seemed to recover thought that's when my snoring got bad.
WELCOME! to the forum.!
Boy, it sounds like you are having a rough time with CPAP therapy. I encourage you to stick with it. With patience, plenty of trial and error, and time, it will get better.
It's not uncommon to use a larger sized pillow for a small nose, that's what I do. I use the medium sized pillow, (rather than the X-small or the small,) ,and that works best for me at this point.
Hang in there for more responses to your post and best of luck to you with your CPAP therapy, don't give up.
Just a quick comment about one of your issues, and that's your earaches. If your jaw is too firmly crammed against your teeth you will experience stress in the gland in between your jaw and your ear. That means hurt a lot.
So the idea is to keep the mouth closed, but not crammed shut. You might consider a chinstrap to "gently encourage" the jaw to stay forward, allowing the mouth to stay shut. Then use the tongue against the roof of the mouth to seal the airway. That can take a little practice, but you will get it done.
The other thing is to be sure your mask is not too tight. If its really tight when you first turn it on, it's going to be way too tight once the air pressure inflates the pillows. So don't do that. They're supposed to fit snugly and comfortably against the nostrils, not so tight they drive Mr. Nosie into Mr. Brains.
Work on one thing at a time and you'll get this down to a science.