How tired were you?

[frazzled-snoozer]

Ever since my diagnosis I've been wondering how much of my fatigue I could rightfully blame on sleep apnea. I've long feared that much of it could actually be just sheer laziness!

I think I may have always had sleep apnea. For as long as I can remember I've needed more sleep than anyone else I knew. I'm not sure how much is weight related because I've always gone up and down the scale like a yo-yo but my sleep needs never change.

I got by alright though until October 2008. I awoke one morning to massive vertigo. I was diagnosed with labyrinthitis and the dr said it could take 2 weeks to 6 months to resolve. I ended up being on the longer end at 5 months. In that time period I didn't function. I left my bed to do things that HAD to be done and part of my treatment was to try to do things normally and also spend at least some time each day doing things that added to my dizziness. I had to train my brain to gain balance again. When I recovered from the vertigo I should've felt on top of the world. But instead I was just so fatigued that I never really got back into the groove again.

So.... for the past year I've been virutually useless. I hardly ever cook. I stayed in bed all weekend and late into most mornings. When I finally get out of bed I do things that require sitting and delegate anything that requires getting up and moving around. For a while I thought it was just a habit I'd gotten into that I couldn't break.

So... anyone else out there that let things go that badly?!?!?!?!?!?!

[KatieW]

Nice to see you posting. How are you doing with your cpap therapy?

I was tired, but not as incapacitated as you were. Hope this is improving for you.

[kteague]

Hi. My sleep issues over time rendered me nearly nonfunctional, the living dead. For a period of time it took more energy than I could muster for even personal hygiene. I hate to admit it, but a few times it was as long as a week between showers, and even a fews days between teeth brushing. Early on I dealt with a lot of guilt and self-lashing. At some point I accepted that I'd done the best I could with the limited energies available. I'd been under the care of a sleep doctor for many years before my OSA diagnosis, so I didn't let my symptoms go unattended. I struggled valiantly for years to keep up with work and home, and when I couldn't any longer, I grieved the changes required of me by my failing body and brain. For me, things got nearly as bad functionally as they could get (short of a heart attack or stroke). But I sure didn't allow things to get that bad - I fought tooth and nail all the way down.

I think sometimes the symptoms are gradually worsening and it's easy to explain away small changes as aging, poor diet, lack of exercise, etc. And I would think in one who had OSA since youth, the sense of what norm should feel like is missing. Hopefully now that you have a diagnosis and are being treated you will begin to see improvements in your energy levels and interest in doing more than only what's required of you. Keep us informed of your progress, unless you feel so great you're too busy to get on the computer!

[SleepyT]

I, too, was very tired. Had to take a nap every day...usually around 2PM. And I do mean HAD to take a nap...not just want to. The fatigue was awful...but as bad as it was...I hated the brain fuzziness...and the depression more.

Still pisses me off to have sleep apnea... as it's my first health issue...and I don't like this 'weakness' of mine...or being tied to my machine (and electricity). Having said that....I am 100% compliant...and am also grateful for the therapy...but I'd be lying if I said I didn't wish I could wave my magic wand and make OSA go away.

[Autopapdude]

Ever since my diagnosis I've been wondering how much of my fatigue I could rightfully blame on sleep apnea. I've long feared that much of it could actually be just sheer laziness!

I think I may have always had sleep apnea. For as long as I can remember I've needed more sleep than anyone else I knew. I'm not sure how much is weight related because I've always gone up and down the scale like a yo-yo but my sleep needs never change.

I got by alright though until October 2008. I awoke one morning to massive vertigo. I was diagnosed with labyrinthitis and the dr said it could take 2 weeks to 6 months to resolve. I ended up being on the longer end at 5 months. In that time period I didn't function. I left my bed to do things that HAD to be done and part of my treatment was to try to do things normally and also spend at least some time each day doing things that added to my dizziness. I had to train my brain to gain balance again. When I recovered from the vertigo I should've felt on top of the world. But instead I was just so fatigued that I never really got back into the groove again.

So.... for the past year I've been virutually useless. I hardly ever cook. I stayed in bed all weekend and late into most mornings. When I finally get out of bed I do things that require sitting and delegate anything that requires getting up and moving around. For a while I thought it was just a habit I'd gotten into that I couldn't break.

So... anyone else out there that let things go that badly?!?!?!?!?!?!

How tired was I? Let's see-I fell asleep on an interstate highway, and was awakened by the wheels of the car hitting the edge of the shoulder (fortunately). That was in the morning, in broad daylight. I fell asleep in the middle of a concert I was playing, when the music got soft. I'd come home, stretch out on the couch, and I'd sleep for 4 hours, getting up every 10 minutes or so. I once fell asleep in the middle of having sex, on top of my girlfriend. I'd say that I was pretty sleepy, and it was strange---knew it was happening, but didn't know why. Finally, I went for the sleep study, after my doctor said "you sound like you have OSA," and have been on the 'pap ever since. I woke up the first night after using the pap, and I had slept 6 1/2 solid hours, with dreams, and was completely rested for the first time in years!

[montana user]

They say medical people are the worst for getting to the doctor and such. I was working in the sleep lab telling patients all the signs and symptoms of sleep apnea, knowing damn well I had every single one of them myself! I had to stop working as an EMT on the ambulance for a while because I was too tired to drive for more than hour! i could not function as an EMT, I could not concentrate, I was a horrible care provider! I did law enforcement. Same problem! I would sit on the side of the highway and catch myself dozing off. Finally got my own sleep study done, and have been using CPAP for just over a year now. I am back to part time ambulance work, on Search and Rescue, and full time Sleep Lab Coordinator. And I still have energy left over

[frazzled-snoozer]

Sounds like some mighty tired folks out there.

Autopapdude..what instrument were you playing in a concert? That could've been dangerous--depending on the instrument!

I'm starting to feel like there are a lot of people out there like me.

[BlackSpinner]

I was falling asleep while typing code at my key board. It was the weirdest feeling, I was concentrating on the logic and code and I could feel myself begin to slide of the chair!
I would come home and fall asleep on the bus, the metro and then in front of the tv.

[Muse-Inc]

I have short slept myself as long as I can remember...sleeping seemed like such a waste so I cut it to 6 hrs or so & slept in on wkends if I was more tired than usual -- I was clueless as to how damaging to my health this was. I was always tired, and then, it started getting worse. I gained 50 #s during a yr or so of extreme stress and blamed it on the stress. Slowly over time, I began falling asleep at concerts, watching movies or TV, during lulls in conversation at social gatherings; for some unknown bizarre reason, I just thought this was normal because at this pt I was getting a lot more sleep and slept in 12+ hrs on the wkends <anyone recognize overt apnea here?>. While getting up in the morning has always been a struggle (I am a night owl), it was becoming next to impossible to wake up & become alert...I was always late to work and had to work late/take work home to compensate; I fell asleep over the keyboard staying upright in my chair with fingers on the keyboard. Eventually, I stopped doing all nightime activities, esp if it meant driving. The worst was falling asleep at a traffic light on the drive home from work, that was while I was waiting for my PSG, the driver behing me beeped at me and completely freaked me out as I'd never fallen asleep while driving; at that point, when I was sleepy driving home I started talking on my cell figuring distracted was better than dead (me or someone else). The epiphany of restful sleep in my PSG and the diagnosis of "severe" meant there was a fix for my exhaustion; I took it and have never regretted committing 100% to CPAP therapy.

[Scarlet834]

By the time I received treatment I had begun needing sick days, zoning out but not quite sleeping at work, crashed on the couch frequently at night long before bedtime, had to pull over while driving, and was all around scary tired.

[tillymarigold]

I was nearly as bad as you. By the time I was diagnosed, I was getting through work with two giant mugs of coffee in the morning, a soda at lunch, and an energy drink in the afternoon (and sometimes a nap, luckily I have my own office), getting home and eating dinner at 6 pm, napping from 6:30 to 9:30 or 10:30 pm, then getting up to go to bed. On weekends I would get up at 11 and if I went out and did something I was okay, I could stay out even until pretty late (if I had my morning coffee, an energy drink before I went out, a soda with lunch, coffee in the afternoon, and another soda with dinner); but if I came home, I'd be asleep right away. If I didn't go out on the weekends, I'd nap from 3-6 pm and go to bed by 9:00. So I was getting 10-12 hours of sleep a day, up to maybe 15-16 hours on weekends. I didn't fall asleep while driving but I did black out a couple times ... I'd find myself driving the car along the road and not remember anything after having gotten in the car 10 minutes earlier. I fell asleep everywhere else though ... yes, including lulls in conversation.

My sleep doctor said that relative to my AHI, I have the most severe symptoms he's ever seen.

I had been telling doctors that I was sure I was more tired than normal people since I was 11 years old. Finally I was yelling at my primary doctor when I was 28, "I know you'll tell me I'd have more energy if I exercised, but I think that's a lie! People have been telling me that all my life and I think they're making it up! Every time I exercise, I just get tireder and tireder every time I do it until I injure myself and have to take a few days off!" She stopped with her mouth hanging open and said "You have a sleep disorder! Forget everything else I said and go call the sleep center right now, we're not working on anything else until that's under control." (Yes, she did say to call them right now.)

[frazzled-snoozer]

I was falling asleep while typing code at my key board. It was the weirdest feeling, I was concentrating on the logic and code and I could feel myself begin to slide of the chair!
I would come home and fall asleep on the bus, the metro and then in front of the tv.

I can so seriously relate to what you're saying. I'm a programmer too but I work from home. It takes a major deadline for me to ever get anything done anymore!! I fall asleep regularly while pondering a line of code. (Can't bill the boss for that hour now!!! lol)

tillymarigold, you do sound a lot like me. I think my AHI is awfully low also relative to my symptoms. It was only 18. What was yours?

[Judy R]

I can so relate to most of you, however, after nearly 3 1/2 years on CPAP therapy, I'm still tired. I still have to take naps, I'd sleep all day if I could. I have no energy to do anything, and I use to be so active. That's one reason why I'm starting this New Year by getting a better more in tuned Family Doctor, and buying the card reader and the software so that I can take a more active role in my therapy. Also, that's why I joined this group. I wanted to learn as much as I can about sleep apnea, and so far I haven't been disappointed. You guys are a great group of people and are so helpful and caring. Thanks so much for letting me be a part of this group, it's been so uplifting, informative, and fun.

[MoneyGal]

I have a slightly different take on this. I was super ultra mega extra tired before diagnosis, but I did not fall asleep anywhere unexpectedly.

I would draw a distinction between "being tired" and "falling asleep unexpectedly." I think my diagnosis was so long in coming because I passed the Epworth Sleepiness Test measures all the time -- not that anyone ever administered them to me. But I would not have described myself as "sleepy" or "tired."

In fact, I think there's a lot of confusion and overlap in our speaking about concepts like "tiredness" and "fatigue" which can hinder diagnosis. I know that when I was saying to people, prior to diagnosis AND in the first few weeks after diagnosis, "I was so tired" or "I was stopping breathing over 90 times per hour" I would very often get the response, "oh, I know what you mean; I am so tired too."

I am a mom of small kids and many of my peers are other moms with small kids - talk about how tired we are is everpresent.

But how tired was I? In the last few months prior to diagnosis, I had stopped doing many things I would otherwise have enjoyed. I was really limiting my life and I was not getting a lot of enjoyment out of the things I was doing. I remember grading for a belt in tae kwon do about six weeks before diagnosis, and I cried my way through it, miserable. But what did I tell myself? "I must be really out of shape...I don't understand why this is so difficult for me...all these other people must be way younger and way fitter."

Another time I phoned my husband from our kids' school, which is one block (about a 2-minute walk) from our house. I said I could either get the kids home, or the car home, but not both. I could not imagine getting the kids AND myself into the car, turning it on, and driving it for 15 seconds.

Another time I went to a client meeting like this: rest in bed until the client meeting. Take cab to meeting. Appear bright and alive for one hour. Take cab home from meeting. Go immediately to bed. Cry and worry about how you are going to be able to fulfill on the contract work you've just landed. Wonder if you are actually going insane. Is this...severe depression?

And my tiredness looked like this (over and over): catch a cold. Have it turn into pneumonia within days. Become delirious with lack of oxygen. Doctor actually issues home oximeter so husband can monitor my levels. Become wheelchair- and bed-bound until the antibiotics kick in, and then think you are "recovering from pneumonia" while you can barely function for the next six weeks. Everyone around you says, "oh yes, this is what recovering from pneumonia feels like."

Lather, rinse, repeat. Finally get diagnosed when, with no pneumonia dx, cannot maintain O2 levels above 90% at any time.

[secret agent girl]

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