4 years on CPAP, and still dealing with sleep hygiene issues

CollegeGirl wrote: But fatigue is also a symptom of hypothyroidism, which I was recently (about six months ago) diagnosed with. My doc says my dosage is right now, but I've been on this same dosage since I started six months ago, and I'm not feeling any better, fatigue or mental-fog wise.

It would be easy to blame your apnea, and bad sleep hygiene, but I fear the real culprit is right in front of you. Your therapy numbers are good - while your sleep hygiene is questionable, I really would ask the doctor what makes him think the dosage is right, some meds don't work for everyone maybe you need to try a different med for your hypothyroidism.

My sleep hygiene is rather pathetic too, so I can't yell at you for that - 40 years of bad habits are hard to break You might try taking a warm shower at bed time and see if that helps you relax. I don't think taking a nap in the toidy without your CPAP is helping. It's probably adding to the problem - I know, I know, I know - THANKS A LOT

Thank you guys! I am so relieved I am not alone... the only reply I got to read last night before I went to bed (last night was an early night because I only slept three hours the night before) was the first person's, and I was SO worried they were all going to be like that. LOL!

Okay, so, thanks to you guys, here's my to-start-doing list:

1) Find a good endo and schedule an appointment. I've been meaning to do this anyway - now I have another good reason.
2) Get an alarm clock with two alarms (GREAT idea tooly!)
3) Start using my laptop on battery only (another GREAT idea tooly!!!! I'm so glad to see you posting. )
4) Be more active (I suspect this is a big culprit - good point, Kathy!). I went out and got myself a gym membership at lunch today, but my leg is currently bandaged from hither to yon, and I won't be able to start actually swimming until three weeks from now. I've been planning to start that for a while, though - I've already got a couple of swimsuits made for lap swimming and everything else I need to get started. I'm excited about this.
5) Minimize the time it takes to get ready for bed as much as possible (more great suggestions, tooly, though I don't know that I can totally implement the laundry thing - I'm gonna try!)

Reading a good book is a GREAT suggestion a bunch of you made, but my problem is that I was an English major and am a VERY avid reader, so if a book is especially good I will stay up all night reading it! Books are dangerous for me. Maybe I'll pull out some Henry James. Everything of his always put me to sleep very quickly in college.

I think oldschoolcpap also was spot-on - it could very well partly be rebellion against the fact I'm not happy with my life at this moment. Not enough to be depressed (thanks to Ellen for suggesting that and looking out for me, but I've been depressed before - and this isn't that, fortunately!), but enough to be frustrated. I'm not happy with my living situation or my parents (stepdad has untreated sleep apnea and won't use his cpap, mom I very much believe either has untreated apnea or Alzheimers or both and refuses to go to the doc, and both are awful with money, and I can't save for my own house b/c I keep having to bail them out...sorry, more than you guys wanted to know) and I go through periods where I love my job and periods where I don't, but the economy situation right now means it's not a good time to be job hunting, and my job is difficult but tolerable, on a bad day. If this promotion comes through, it MIGHT be enough for me to be able to change my living situation - but it might not. We'll see.

LOL @ Kathy's suggestion to move around the world! Sheer genius! I talked to blarg just a couple nights ago - he seems to be doing fine with his sleep schedule now - I'll ask him if he thinks it was the time change that remedied that.

Pineapple, you were absolutely right to scold me for the bathroom naps. I used to scold people for napping without CPAP, and now I do it, too! Granted I'm sitting completely upright so as to minimize apneas, and it's not for very long, but you're absolutely right - it's not helping me any, and it's probably hurting me.

And thanks, Den, for the links - I'm going to peruse them this afternoon after work - thanks to my usual verbose nature, my lunch hour's almost up!

I love this forum. This empathy and commiseration has meant SO much to me. I've been feeling so mad at myself about this, and now I feel like I'm not alone. Hugs to all of you.

Edited to add: I'm going to implement all these changes one at a time, slowly. If there's anything I learned from this forum, it's that I need to make big life changes sloooowly and deliberately!

SharkBait wrote:

yorkiemum01 wrote:Sharkbait is my soul twin...........

Hope this doesn't freak you out, but when I'm reading I also have a 4 lb yorkie nestled up against my leg...

Her name's Macy and she's 7. I bought her for my kids but since I work out of my house I was given the chore of potty training her and it took about 6 months. By then she was pretty much hooked on being over here with me and my two Brittanys and she quickly was able to take over herding Brittanys like she was a sheep dog so they would move out of the way and she could go for a ride in the car.

I was never much for small dogs but this 4 lb critter is the best dog I have ever had and it's not even close.

[/hijack]

Wow...that is coincidence.....they are fantastic dogs, and mine is normally nestled in with me while I read my book.
They're the best!

CollegeGirl wrote: So I'm thinking I'm just so exhausted (whether it's from the thyroid or the bad sleep hygiene), that when I get home I don't have the energy to do what I need to do to go to bed. It takes less energy to read or surf the net than it does to get my clothes together, make my lunch, etc for the next day.

CollegeGirl,

This sounds very much like me before CPAP (and to some extent after). I'd come home too tired to accomplish anything. So I'd get on the net while I tried to find the resolve to get going and do whatever had to be done that night. I'd tell myself I couldn't go to sleep because I had to do xy & z (such as work clothes). But I couldn't drag myself up to do that. So I stayed on the computer for hours until desperation gave me enough of a second wind to do it or, more often, until I was so tired I just didn't care whether I had clean clothes or lunch prepared and would stagger to bed at 3am or later.

Your plans for addressing possible causes of your exhaustion sound good. In the meantime it may help to get all your "work" done as soon as you walk in the door at night or even over the prior weekend. Without a to do list hanging over your head all evening it might be easier to go to bed. I admit I've never succeeded at this but it's always been my fantasy to have all my clothes for the week laid out on Sunday. (OK. My real fantasy is disposable clothes coming out of the wall ala star trek. And I'd like them magically materialized onto my body so that I can grab one minute more of sleep. And I want my humidifier to dispense coffee through a tube in the morning.)

CollegeGirl wrote: Maybe I'll pull out some Henry James. Everything of his always put me to sleep very quickly in college

He always worked for me. Magic insomnia cure. I wonder if it works as well in it's online form.
http://www.gutenberg.org/browse/authors/j#a113

Good luck
MidnightOwl

Someone suggested moving to the other side of the world... um, that won't work.

But if you really want to chuck the circadian rhythm, go into shift work. If you are changing your sleep pattern drastically on a regular basis (inverting your pattern entirely at least every 2 or 3 weeks for a week or more at a time) you will remove the circadian rhythm from the equation.

I've worked 8, 10 and 12 hour shifts. An 8 hour cycle can be quit nice (if you don't mind the effect on your social life.) For example imagine 7am-3pm/3pm-11pm/11pm-7am pattern. You start off working 7-3, then after a week or two, you get several days off. During the days off you just stay up late each night and bingo, you're ready for 3-11 shifts for a week or two. (Repeat days off and staying up late.) And then you're into 11-7 shift. (Repeat.) This pattern actually rewards you for staying up late!!! And you never have to hold a pattern very long. If you do stay up late a few nights and bugger yourself up. All will be fixed by your next transition. The side effect of the constant changes shuts down the circadian rhythm entirely. Your body needs to be exposed to sleeping similar hours for a period of around 4 weeks to "set" this pattern. (I speak from long experience.) You can actually set a reverse pattern by sleeping always in the daytime. But the one killer is sunlight when you sleep! The sun plays a major role. Shift workers have long learned to take phones out of bedrooms, and put up hotel style heavy-lined drapes that can black-out the room (or wear a sleep mask covering your eyes.) The trouble comes in breaking the circadian rhythm. I had a job where we did 2 months training on a normally 8-4 schedule before starting our shift rotation. Breaking into the rotation after all our bodies had set circadian rhythms was extremely unpleasant. But once broken, the pattern was quite nice.

Once your rhythm is broken, you can sleep whenever you go to bed. This could be considered very bad. But I've found the effect works for me. All the circadian rhythm ever seemed to do was make me feel horrid. I couldn't sleep during the day if I wanted too. It made me feel awful just because it was "time for bed" as far as my body was concerned. (Whenever I stayed up too late, the circadian rhythm seemed to magnify the negative effects and prevent or delay recovery.) Without the rhythm working it's evils, I feel tired only when I've not gotten enough sleep or I've been up too long -- never because it's a certain time of day and my body wants me to sleep now (whether or not it makes sense to do so.)

There have been lots of studies about the dangers and life-shortening effects of shift work. I don't disagree. It's got some serious drawbacks also. But once upon I time, I used to really enjoy my shift work and found it helped me.

Where shift work will KILL you is in trying to fit social and family life (or more simply "LIFE") into your shift patterns. When you start messing with your sleep cycle to get up early this day for this event, and taking quick naps before work. That's when you'll really start to hate shift work.

To survive shift work, sleep your work pattern. Get up every day the same period of time before whatever shift you work (for me 2 hours before my shift.) And go to bed around the same number of hours after the end of your shift. This way, your sleep cycle is always directly related to your current shift. Getting up early and staying up too late are bad. But they don't have quite the same devastating effects that circadian rhythm locked folks have.

You know how every year they talk about the sleep effects of daylight savings on everyone? That has more to do with circadian rhythm than anything else. You disrupted the rhythm - how dare you! On shifts, and without a rhythm, a minor change like that is a speed bump in the road and just as quickly forgotten.

I now work 12 hour shifts. There is pretty much time to Work-Eat-Sleep-&-Commute on a daily basis. I have only about an hour of "free time" before bed when I get home (usually spent on the phone to friends of family.) The bonus is more days off. The downside, all those things you do after work - have to be done now on days off. So those extra days off vanish quickly unless you are disciplined. The mega-downside: when you do stay up late - boy are you gonna feel that tomorrow! The upside of the mega-downside: you'll only have to work 1 or 2 more days before you get 2 or 3 days off to recouperate and get back on track.

All things considered, I prefer the sleep schedule of 8 hour shifts and the days off of 12 hours shifts. (With 8 hour shifts you usually work 2 weekends out of 3. With 12 hour shifts, you have every-other weekend off.)

I would not advise anyone to rush out and get a shift work job. But I will say that if you really have trouble sticking to a sleep pattern, it can actually help in a perverse sort of way. Even though your sleep Doctor will probably be appualed!

The above is based on my experiences. I've been working shifts for years. Spent considerable time learning (the hard way) what works and doesn't - for me. Your experience might be very different. Not everyone has the same reactions to the same influences. So please consider that before rushing off to sign up for shift work.

Someone at work swears by their "alarm clock lamp", specially during the winter when it's dark in the morning. I believe the idea is that your circadian clock is fine-tuned and kept on schedule by dawn's "light". There are "full spectrum light" alarm lamps that will turn on the light at a specific time. I think some of them ramp the light up slowly to mimic dawn approaching. My coworker says that the light wakes her up more gently than a loud alarm and helps her stay on a schedule.

I haven't tracked down one of these lamps yet. But since she mentioned this last year, the first thing I do when I wake up is turn on all the lights in the house, and it seems to help me get moving. And if I get moving at a normal time every day, it helps me get to sleep at a normal time too.

Hi College Girl - always so good to see you here!

First...you are definitely not a moron. Reading your posts over the past couple of years definitely has proven that!

There are SOOO many issues to consider when trying to straighten out sleep issues. Good advice has been given, and there is one point that seems to be missing - considering the possible effect of UARS/Flow limitation/RERAs. (these seems to have some differences, but generally these words are used interchangeably.)

I have been on cpap now for almost 2.5 years. I go through periods of things not working at all to it all working smoothly, where I can get my AHI down below 1 consistently. (anything above that and I feel about the same as I did before treatment.)

But even when my AHI is at those low levels, I am not 100% - I feel better, but only marginally so. I have kept my eyes and ears open to why this could be, and have found some valuable info in the threads about flow limitations/UARS etc. These also cause arousals, and may be interrupting your sleep deep sleep just like apneas/hypopneas.

One thing that I gleaned, was that "they" don't really know how to treat flow limitations specifically, so prescribe cpap because that usually seems to take care of it. But not always...This seems to be an open issue in the field of sleep disorder discussion. You might want to check these threads.

http://tinyurl.com/d4882n (a 6 pg. post, but very valuable info)
http://tinyurl.com/ddg3um
http://tinyurl.com/dna63a (talks about flow limitations - some more links in Rested Gal's post too.)
viewtopic.php?p=285569#285569 (some links for sleep hygiene and a very good post on UARS by Snoredog)
http://tinyurl.com/c22nz8 (article by Dr. Parks on UARS. He is a ENT, and dentist specializing only in sleep issues.)

I think I am missing some useful links by Dr. Krakow. Do a search for Krakow to bring up posts where people mention his info, and search BarryKrakkowMD to access his specific posts.

Hope this helps. -Betty

Ha, oldschoolcpap - sounds like I was made for shift work! Unfortunately, there's no such thing in the kind of job I have now - it's pretty much 9 to 5 only. If I ever find myself job searching in the future, I'll definitely have to consider this!

TSSleepy, that's some great advice. I knew someone who had a light alarm clock once and she loved it. Maybe it's something worth trying!

Betty, thank you so much for your kind words! I will definitely be looking at those links. I would *think* that if it was flow limitations, they'd be showing up in my cpap data, yeah? Maybe not? I'll keep this in the back of my mind and talk to my GP if I'm not seeing results - maybe she can find me a good local sleep doc to address RERA's/FLs etc with. Thank you for your suggestion!


I got 9 hours of sleep Monday night, and 8 hours last night. I still feel dead tired and hit the snooze button a million times because I'm so exhausted...I was tired all day...BUT I haven't napped at all the last couple of days...so that's an improvement.

I just remembered (lol - my memory is still AWFUL - 4 years on cpap hasn't fixed that!) - I went to bed in time to get 7.5-8 hours every night for a month or so once - and I still didn't feel any better at the end of that month. Is it possible 8 hours is not enough for me? It doesn't seem like that should be "normal" for someone on cpap for so long...

You avoid going to bed like I avoid housework, with the result that I hardly ever have anyone over, and I'm very social. We both know how to shoot ourselves in the foot (feet?) well. But here's a little trick I have learned and you will be surprised how well it works: set a timer when you get online. Don't set a limit for yourself, just track your time online. Then, for every 15 minutes you are online, you make yourself spend 15 minutes more in bed. Don't make it a rule that it has to be going to bed earlier--just "in bed", via naps, sleeping in, etc. Then that will become inconvenient and you will get tired of trying to work it in, and before you know it you will be going to bed a little earlier.

If you can just keep it up for a week, my guess is you will be hooked. It's worked like a charm for me with housecleaning: I can spend however much time I want online, but I make myself spend an equal amount of time on housework. My house looks better, and I'm actually doing stuff like getting out of the house with all the time I'm NOT online. No matter how much fun the Internet is, it still simply involves us sitting on our fat butts in front of a screen writing about doing stuff instead of actually going out and doing it.

You have nothing to lose by trying. Good luck.

Hi, CollegeGirl,

I’m new to this forum and noticed your post about the late nights. (It was your Hypothyroidism that caught my eye).

Rested Gal said:

But all that said, CG, I can't help but think that your sleep is not the lone culprit in how you feel. How often are they checking your thyroid levels and where in the normal range are they falling? Years ago a doctor told me that he didn't agree with traditional views on thyroid levels in that just getting someone into the normal range is not sufficient. He said even if somebody tested in the normal range, if it was on the lower end of that range and they were still symptomatic, their levels should be brought to the higher end of that range. Also, if one normally was at the hgher end of the range when their thyroid was healthy, having it drop to the lower end is not normal for that person and may produce symptoms. Sounded reasonble to me, but what do I know?! Do you think it would a reasonable step to be evaluated by an endocrinologist just to see if they can pinpoint anything?

Exactly my experience. I, too, have been recently diagnosed (even though I talked to several doctors 20+ years ago about it - I knew it wasn’t “all in my head”!)and am at last being treated. Current Dr. is an M.D. with a non-traditional approach and at last, I’m getting some real help with my endo. Issues. (I’m also seeing an endocrinologist In May for a second opinion, just because I don't want to waste any more time). I have recently learned that OSA is also a symptom of Hypo. I’m sure you’re aware of that. But did you know that with Hypothyroidism, you can also suffer from adrenal fatigue (or adrenal burnout, or insufficiency) and one of the classic symptoms is that you’re exhausted during the day and energized at night? As Kathy said, this may be something to discuss with your Dr. Maybe your adrenals can use some support, too.
Some sites with good info. that address the thyroid, adrenal, sleep connection (and there are tons more):

http://www.thyroidpower.com/interadrenalthyroidfr.html
http://www.adrenalfatigue.org/sleep_disorders.php
http://thyroid.about.com/cs/endocrinolo ... atigue.htm

It sounds to me like it may be more than just a case of lack of discipline! Good luck!

I scanned the replies you've gotten quickly and apologize if someone has already mentioned this, but too much sleep can leave you as lethargic as too little. You might try limiting your sleep hours to 8 for a few days running and see how you feel. Yes, that will mean setting one of humankind's most loathsome inventions: an alarm clock.

I definitely identify with the struggle just to do the obvious: go to bed at "bedtime."


My thoughts on the whole issue include:

1. I'm a bachelor, but when I've been intimately involved with someone, I easily adopted her sleep habits and fell asleep as soon as we tried to, regardless of whether that was immediately upon leaping eagerly under the covers. I'd still have bouts of insomnia, but fewer.

Why? I think largely it was just a change in habits.

Solution? Either adopt new habits, or start dating again.


2. Reading does not work for me - I can't put books down.

3. I sleep better when I'm getting plenty of exercise.

4. I sleep better if I don't eat after about 7 pm.

5. I go to bed earlier if I turn the Internet off - I haven't had a TV in 20 years because I wasted so much time with the silly thing, but the Net is just as bad: I can easily blow a ten p.m. bedtime by checking my e-mail one last time before retiring...three hours go by, and....

6. I recently invested in a $7 timer to run my little greenhouse's lights - the same thing attached to a lamp would allow a lamp in my bedroom to turn off and turn on at the same times....

7. Also have invested in dark curtains, and will also be lining the windows. I never sleep as much in summer, and need to darken the room.

8. Sleep habits are, for me, like exercise and diet habits: I do better if I keep a log, and after a few weeks of keeping that log, habits become...habitual. I have logged my sleep most nights for three months now, and am averaging a bedtime of about 12.30.....crazy.

9. Habits seem to involve the ability to forgive my own failures and start over, again and again and again....true with exercise, true with nutrition, and probably true with sleep....Over six months, I've greatly improved my diet and exercise habits, my health and fitness have greatly improved, and I've come to realize part of it is just pure, raw self-discipline - I've never had too much of that, but find I can develop it when motivated...say, by fear of heart disease...

10. I sleep better if I know I am ready for the next day - lunch and such already in my briefcase, keys, wallet, and phone next to it, and so on. It's a ritual of sorts, and makes the morning less maddening.

11. I think part of getting an evening bedtime established will stem from establishing a regular wake-up time, too - sleeping in until ten a.m. on weekends means I cannot fall asleep on Saturday or Sunday nights, which starts the whole cycle over again....

Sure, it could be bad habits - but a few things that have recently helped me:

1) Getting a little more (or a little) exercise early in the evening - a walk around the block or whatever would be very light exercise. Ideally outdoors.
2) Make sure your mask fits. I started out with a partial mask (just over my nose) but I'm a mouth breather and could never get more then 2-4 hours a night with the CPAP. THen I got a full face mask (after playing with mouth taping etc.) and that helped - but still only 4-5 hours a night. Turns out my mask was too small and when I would open my mouth too wide while asleep I would have the same problem as with the nasal mask - wind tunnel up the nose and out the mouth - wake up just enough to turn off the machine and take off the mask. Recently I got a larger full face mask and ROUTINELY SLEEP THE WHOLE NIGHT with mask and machine (YEAH!)
3) 4 -years -might be time for a new sleep study. I went 6 - turns out my needs have changed fairly significantly.

GOOD LUCK

There's lots of good advice in this thread about sleep hygiene. However, I didn't see where any one to date has mentioned the importance of exercise in your daily routine.

If you are living a sedentary lifestyle, then some exercise during the day can provide tremendous benefits. It need not be a 2 hour workout or a 10 mile run. All I'm talking about is maybe a 20 minute walk, or walk up a few flights of stairs during the day at work. More is better.

I can always tell when I've slipped back to my sedentary ways: it shows up first in my sleep patterns, and secondly in having to let my belt out another notch.

BTW, it's probably best NOT to exercise just before bedtime. Exercise for me is best if done in the morning. YMMV