Sometimes good sleep needs more than just xPAP

[DocWeezy]

This is the story of my personal journey to better sleep. I'm not suggesting that this will work for anyone else, nor am I suggesting that anyone should try it. Everybody is very different in their needs and medication situation. I'm sharing it only as an example of how complex and individual good sleep can be.

I have a lifetime of poor sleep, and can remember not sleeping well even as a child. I don't remember a time in my life when I was not tired and exhausted, and even though I didn't let that stop me from doing things, everything became more and more difficult as I grew older and continuing to push through was becoming almost impossible as I approached my mid-50s.

I've now been using APAP for 4.5 months. The first two months were abject misery in adjusting to the machine, claustrophobia issues, mask problems, etc. etc. etc. etc. Fortunately, I found this place very early and learned how to take control of my therapy and stick it out. I also discovered that I'm fortunate because my sleep doc is really very good and turned out to be very supportive of my tweaking my pressures. Unfortunately, he hasn't been so great about looking beyond APAP for the more subtle issues, which is what led me to this journey; however, he has remained supportive and encouraging.

Getting the pressures tweaked and my AHIs lowered was easy, and once the claustrophobia and panic issues resolved, I started sleeping more hours and was up to sleeping about 5 to 7 hours most nights. The numbers were good, leaks were very low, everything said that APAP therapy was working for me. I had become religious about sleep hygiene (thanks, Robysue!) and it did help to extend the number of hours I was sleeping.

But I still didn't feel awake and was still pretty tired most days...not nearly as bad as before, but still not very good. My gut instinct told me that while I was sleeping, I wasn't getting enough deep or REM sleep. So in order to try and get some idea of what was happening there, I bought a Zeo sleep monitor--it tracks your brain waves and interprets them into the different sleep stages. No, it isn't as accurate as a sleep study, but I just wanted to get some idea of what was happening on a regular basis night after night. It does seems to work. The first several nights I used it confirmed that the bulk of my night was in light sleep, with less than 10 minutes of deep and REM sleep. I was also waking up 10 or more times per night, even if I didn't stay awake for long. So....even though my OSA was well controlled, I still wasn't sleeping well.

Tried hypnosis; helped some but not much. Tried self hypnosis--same thing. Tried calcium/magnesium with no luck. Can't take Ambien--makes me totally whacko the next day. Lorazepam cut down on the awakenings, but did nothing to help the sleep stage issue and I don't want to take it long term.

Started researching serotonin issues...I know I've had serotonin issues throughout my life and anything that has increased my serotonin immediately decreased the crazy carb cravings I've fought my entire life. However, in the past whenever I've taken any kind of antidepressant that increases serotonin, it seriously messed up my sleep and I would only sleep about 2 hours--even the ones that weren't supposed to do that. I wasn't willing to try those again.

In researching the serotonin/insomnia issues, I found studies linking tryptophan to lessening/improving insomnia. So I thought what the heck--can't hurt, might even help and I would quickly know if it made my insomnia worse. Most of the studies used anywhere between 1000 and 3000 mg of pharmaceutical grade tryptophan. So I got some and started at 1500 mg per night.

WHAT A DIFFERENCE! The first night my deep sleep jumped to about 20 minutes; REM went to almost an hour. I had half the number of awakenings. Still only got about 6 hours total sleep, but I felt a lot better. Stayed at this level for several nights, with the same results. Decided to try 2000 mg one night and bingo--deep sleep at about an hour; REM at about 1.5 hours. Even night I take it is similar.

AHIs haven't changed and are still good in the .2 to .5 range most nights, although there seem to be more nights at the .1 to .2 level. Weirdly enough, the nights with the most deep sleep and REM sleep seem to have the least number of recorded apneas.

I'm now going on about 2 weeks of sleep with more normal amounts of deep sleep and REM, and wow, do I feel the difference! Energy level is way up, and absolutely no crazy carb cravings either.

Still working on extending the actual number of hours sleep a bit...while I feel 500% better, I still feel like I need about another hour of sleep. But at this point, even if I never get there, I don't care...if things continue at this level, I'm happy. Most nights I get between 5 and 6 hours of good sleep, with deep sleep accounting for about 15% and REM accounting for about 20% of that. Awake time is way down, as are number of awakenings. I even have some nights where I'm not waking up at all until about 4 or 5.

So the bottom line for me was that APA therapy was only the starting point. And while it is obviously a major player in my lifelong sleep issues, I've discovered that other areas needed support in order to achieve better sleep. I'm hoping that over time as I continue to sleep well and my body starts to recover from the chronic sleep deprivation, I'll be able to achieve good sleep without the tryptophan. The journey is probably far from over, but for the first time I'm feeling like I'm well on my way and beginning to enjoy the benefits of sleeping.

The best and most noticeable thing: bike riding is now just joyful instead of exhausting!

Weezy

[Pugsy]

So the bottom line for me was that APA therapy was only the starting point. And while it is obviously a major player in my lifelong sleep issues, I've discovered that other areas needed support in order to achieve better sleep.

It is often just the starting point in the journey to feel better. Good job on not giving up and keeping working on trying to isolate your particular causative factor. It took me about 18 months to find mine. There are a lot of factors out there besides OSA and sometimes we just have to keep plodding along till we stumble over it.

Well done and I am so happy for you.

[JayC]

I'm part of this club too.....

Right now I am on light therapy every morning, APAP every night (and nap, if any!!), and recently getting back to some vitamins (Omega complex and calcium with D and Magnesium) that got lost in the shuffle during my recent move and other major speed bumps in the path of life.

I HAVE to keep up on the clean eating, and enough physical movement (which I am not doing at the moment) as well as light and sleep issues to get that productivity.

I've done the mental health therapy (and still do, although mostly for support at the moment since these functioning issues are invisible and somewhat disabling), neuro testing, neuropsych testing, sleep studies.....

I have this brain thing (odd electrical results on EEG) that doesn't rise to being called seizure; maybe "depression" has been more a side-effect of the brain activity rather than a mental health issue of its own... Maybe sleep disordered breathing with some desaturations that likely date back to puberty, and insomnia issues dating back to at least age eight is what got my brain firing odd electrics....maybe SDB, insomnia, and electical activity are intertwined both in origin and solution....

What I know is that docs don't get what is up with me, and have largely been too quick to opine that the abnormal results show something is up, but they don't see how that adds up to create the ongoing issues of said scope for me. Problem is, they stay with their textbooks and forget that I am a person.....and they somehow often forget to add up ALL the abnormal results and THINK about how these things may be related and inter-related!! And this is from smart, compassionate, top of their class docs working at Harvard Medical School connected hospitals.....!

CPAP gave me a huge missing piece (and peace)....... which just allows me the energy to continue to address other portions of the big picture. So much easier to think with sleep!! And this from someone who is at the moment averaging less than 6 hours of sleep a night. And 6 hours being way more than I got nightly for quite a long time before I started CPAP in 2008!


When my Fellow in Behavioral Neurology referred me to Seizure Specialist for extensive EEG testing, then onto Sleep Medicine for sleep study, he did a good thing.

After starting CPAP therapy, he and I had a follow up appointment as he had been the one to get all those referrals going. I thanked him for doing that for me........and I commented on some commentary I read in the related reports that indicated he (and or some of the other sleep docs) was skeptical that any of these results would indicate the level of cognitive functioning issues I was reporting. He wrote that I must have some undertreated mental health issue....

I suggested (with much respect) that if he had my issues to deal with, and had been marginalized or not helped for so long, that he would likely not have been high in his med school class...if he was even able to get into or through the rigors of med school nevermind a top school. And that maybe the COMBINATION of all this "small" irregularities needed to be added up and looked at as compounding each other.

And I thanked him again for ordering the testing despite his skepticism........ I believe, from the look on his face, that he really heard what I was saying, and that some other patient not presenting with the expected would not be lost in the shuffle, nor their real struggles dismissed so easily in a sentence in the records.

For the record, my place of mental health treatment for the last 9 years is also part of the Harvard Medical School system, so the attitude in the records has more to do with attitudes of medical pros towards mental health and medical health crossovers, than with the quality and thoroughness of the mental health treatment I was getting. I was referred for the sleep/eeg/neuro testing after lots of med trials, lots of behavioral skills training, lots of individual therapy.........there was not un- nor under-treated psych issues........... just unaddressed *brain* issues and SDB issues of probably brain and mouth/jaw structure origin!!

J

[DocWeezy]

Wow, JayC, you have really been climbing uphill. Your tenacity and determination to help yourself is impressive.

How is the light therapy working for you? I just got a blue light box last week and am using on dark/rainy days when I can't get out and walk fairly early in the morning. I THINK it helps to wake me up, but I'm not sure.

Weezy

[DocWeezy]

Thanks, Pugsy. Part of what got me going down this other road was reading about your physical/orthopedic issues with sleep which led me to start questioning WHY I didn't feel better and was still tired.

Weezy

[JayC]

If I am not tenacious then I get lost in the shuffle.....as it is I don't "look" like I have a "problem" so they don't really get it!

I use equipment from the SunBox company......not the blue light version. Both lumens and angle and distance from the sight source are factors in the therapy as determined by NIH studies. I have not seen actual studies regarding the blue light equipment (not saying it doesn't exist....just that the commercial sites don't provide detail OR links so that I could see the studies they rely on in their sales efforts!!)

I have been using the light box mornings since last summer..... Historically, (my entire adult life!!)my worst functioning time is spring (round about now!!) because the effects of short days is cumulatively too much, even as the days are getting longer by now.

The light therapy has shown measureable improvements in my sleep length, my awakeness, my functioning in several areas. Gradual increments, but measurable! I have not made other changes, so the improvements are from this therapy....especially as I have had MAJOR MULTIPLE stressors happen during this same time period. It is almost scary to realize how positive and real the improvements are IN THE FACE of at least half a dozen major hard/heavy/difficult/bad events and situations!

I make a point of getting outside as well....as early in the day as possible....but use the light box daily as well.

At this point, I don't skip it unless I have no other choice! Can't wait to see how the second 12 months on it go! Wish I had been able to purchase it sooner! Sure happy to have it now!!


You likely won't see the full improvement in a week.....and perhaps you might benefit from a daily routine at some point to compare...?

Warm regards,
J

Wow, JayC, you have really been climbing uphill. Your tenacity and determination to help yourself is impressive.

How is the light therapy working for you? I just got a blue light box last week and am using on dark/rainy days when I can't get out and walk fairly early in the morning. I THINK it helps to wake me up, but I'm not sure.

Weezy

[Jade]

DocWeezy, when you say "serotonin issues" are you talking about depression, or something else? Just wondering how you became aware of this. I don't think I've got problems with my serotonin, but my sleep has become unfreshing on cpap, though I'm sleeping about the same amount of time each night (as best I can tell). I'm wondering if tryptophan or melatonin or something, might be helpful for me.

JayC, do you consider yourself a "night" or "morning" person? I have been considering trying a lightbox in the afternoon, as I have no problem waking up early and easily, but get sleepy very early in the evening (much more in the winter than the summer).

[bayourest]

it is interesting to me to read that someone else has a hard time adjusting as the spring comes in. I think I "should" feel better as the days get longer after a long winter but that's when I start to feel worse. I've noticed it for several years.
As for tryptophn, my vet suggested it for my very active, very anxious, dog and it made a world of difference for him. It did not have any type of artificial or sedative effect. it just allowed him to feel/act calmer and to focus, while taking off the edge. No "personality change" except that he is more accessible in training and more able to relax.
What kind of tryptophan did you get? OTC or Rx? I'd be interested in doing some research on this.

[JayC]

Jade~

I would choose "night person" if only for the fact of having chronicly less than stellar mornings (even when awake and out of bed!) for most of my life. Don't know what I would be in a "perfect world".... the night is what I know more of, and it is quieter (which I like!!), but really not in touch with natural rhythms after pushing past tired to a second wind and staying up to do things that I would be too thickheaded or grouchy to accomplish in the morning.....

Lightbox therapy I believe has something to do with melatonin production, as well as whatever it might do to other brain chemicals and processes. And light exposure could be too activating and potentially interfere with sleep if done too late in the day. That said, I believe in experimenting. Just keep notes as you do so you can notice trends and other factors (time of month, time of year, weather, eating and hydration, .........).

Are you waking early after sufficiently long sleep? After sufficiently good sleep? So is the early sleepiness related to sleep quality or length?

You mention winter being harder......well, less light per day, and depending on where on the globe you are, (like me) even a sunny day can be not enough to do good things to our sleep.

As I get better at breaking the old habit of pushing thru past midnight to a second wind, I am increasing my sleep time/quality and waking up between 6 and 8 with no alarms. Then I do my light therapy pretty much as soon as I wake up....30 min minimum....and if I am groggy, I just keep the light on until I feel right turning it off! (Usually about an hour and I feel a shift of alertness.....then get moving on my day.)

For me, late in the day groggy can *also* be related to when and what I am eating. A protein snack when I slump (rather than the carb I might crave!) helps get me out of the late day slump, so winter especially (but anytime of the year) I need to notice my hydration and food intake in this functioning equation.

Hope this gives some background/thoughts to ponder....

J

[jeffishere]

I had become religious about sleep hygiene (thanks, Robysue!) and it did help to extend the number of hours I was sleeping.
Weezy

Thanks for the great post! Could you be specific about sleep hygiene? Are you referring to no TV etc. in the bedroom, or about cleaning the mask & tube etc.?
I will try Tryptophan....any contra-indications you're aware of?

thanks again!

[DocWeezy]

Hi Jeffishere.....for the sleep hygiene, do a search on Robysue's posts--she KNOWS sleep hygiene and has many fabulous posts about it. One of the key things for me was the idea of getting out of bed when I can't sleep and doing something quiet until I feel sleepy again.

As for the unrefreshing sleep: Are you checking your numbers? Has your AHI changed? Has anything else changed? Mask leaks? Machine pressure? Hose leaks?

Re the serotonin issues: I never really had any idea about it until about 3 years ago. I never considered myself depressed, but after my first knee replacement surgery and a few months into a very difficult recovery, my gp doctor suggested a mild antidepressant to help (I had become mildly depressed and pretty weepy--no surprise after a total knee replacement and heavy pain meds for months). While my mood didn't really change too much--except I became more like my normal self again--the huge difference was in carb cravings. My entire life has been a battle against cravings for bread and sugar. I usually won the battles, but it was a struggle every single day, especially in the afternoon. After a few days on the Wellbutrin, I had NO carb cravings. It was rather bizarre. My doc speculated that I've not had enough seratonin because low seratonin can cause carb cravings (and remember that I was severely sleep deprived at this point but we didn't know it).

so I stayed on the Wellbutrin for a couple of years just because of the lack of cravings, although it messed up my poor sleep even more. I would occasionally go off of the Wellbutrin just to get some sleep, but when I was on it, my "normal" sleep night was about 3 to 4 hours, with about a 1 hour nap in the afternoon. Every time I went off it, carb cravings went back through the roof. Not good! I finally went off it for good when I went on cpap and just went back to the fight against cravings.

So I guess there's something about my body that does better with a supplement to support seratonin production. I am still having absolutely no cravings since taking the tryptophan, and my sleep continues to be pretty good every night--it is better sleep than I've had for decades. I'm hoping that I can back off or stop the tryptophan eventually once my body has recovered from the sleep deprivation and I'm consistently sleeping well (I truly hate taking pills!).

It really doesn't make any sense why Wellbutrin messes up my sleep but tryptophan helps it. They both support serotonin production. I can only speculate that there is something in the Wellbutrin that triggers something that messes with my sleep and tryptophan doesn't trigger whatever it is.

I just looked for pharmaceutical grade tryptophan at my favorite health food store. I bought the "Now" brand and it seems to be good.

Weezy

[Jade]

JayC, good point about tracking to notice trends or just have a record of what I did and what the results were.

I’m a morning person, myself…never really needed an alarm clock to wake up early, and when I’m up, I’m UP. Quickly and effortlessly alert. As Monk from the tv show says, “It’s a blessing. And a curse.” But not so much of the later, actually. Well, I guess the flip side is a curse. I never could pull all-nighters in school or go to late night parties. Try keeping me up past 11, give or take, and a person is risking some serious consequences and possible bloodshed (theirs, not mine).

The difference in light due to seasons is very noticeable to me. DST is my most hated government program—seriously.

My sleep time is about the same as pre-treatment. Slightly increased wake-ups as best I can tell, but I wasn’t tracking it before cpap came into my life. I’m not feeling refreshed after sleep now. I did before. I have periods of huge fatigue, where I haven’t the energy to even stand up much less exercise. Plus a bunch of other negative symptoms. It’s very odd. And that’s why I wonder if trying typtophan/melatonin/mystery substance would restore restful sleep AND let me continue using cpap.

DocWeezy, I do check my numbers, and they’ve been great from day 1. Everything’s within optimal parameters and has been confirmed by a sleep study not too long ago. Unfortunately, sleep and daytime quality of life has been rotten since day 1, too. It can fluctuate a lot even within one day though. My childhood feelings of being an alien stuck on a foreign planet have come back!

I’ve never had strong carb cravings. But maybe the tripto. will still help the sleep. Thanks for sharing your story. It’s great you’ve been able to learn so much about how your body functions best. More power to you!