Unanswered Questions

49er wrote:

ironhands wrote:The can't really check for gluten intolerance reliably, but you can check for a wheat allergy, or a blood test for celiac, but if your b12 isn't abnormally low, or you aren't getting stomach issues or running to the bathroom after having a few beers or a plate of pasta, it's probably fine. Low B12 can make you feel tired all the time, and interfere with your sleep.

When you say you're tired during the day, is it more of a physical exhaustion, like, your limbs feel like lead, or sleepy tired? If so, we might be talking about atypical depression, which is anti-depressant resistant, and more physical than classical depression. Also causes hypersomnia.

Melatonin is a good first step, but I would highly recommend going with the l-tryptophan (or 5HTP if you can't find the tryptophan) because of the daytime effects as well. At night, it metabolizes into melatonin, and during the day, serotonin, so it acts as a sedative AND as an antidepressant - while you may not be psychologically depressed, you are certainly physically depressed, and the extra serotonin boost will (hopefully) help with that without the negative reactions from the prozac.

If bradc has taken prozac or any antidepressant recently, taking l-tryptophan or 5HtP is not a good idea because of the risk of serotonin syndrome. And if he hasn't, it is a good idea as with any supplement to start low and go very slowly with the dose. Many people find they have to take 1/2 the amount of the suggested starting size.

I haven't taken any anti-depressants in several years. The last one I took was trazadone? which they gave me as a sleep aid. I have already disposed of the Prozac that was prescribed a couple weeks ago because I'm not taking anymore of this stuff that turns me into a zombie. Like I said before, I feel like if I was able to get a good nights sleep everything else would take care of itself, which may or may not be completely wrong. I had only been taking the melatonin for less than a week, but I quit taking it.

As far as being tired, it is sun-up to sun-down. I am always sleepy tired and a lot of the times my feet feel like lead and my legs feel like jello, but this seems to be tied to how exhausting my dreams are, and how much I wake during the night. And I can most definitely tell a difference in my hunger throughout the day based on this.

I am going to do some research on l-tryptophan and 5-HTP and see what I can come up with.

49er wrote:

Pugsy wrote:Actually Melatonin 10 mg (are you sure it is 10 mg) is a very high dose and it may be counter productive.

Discussed often here on the forum. I don't have that link handy .....anyone have that discussion to the video where the doc says "less is more" when it comes to Melatonin?

Read up on side effects..it isn't as benign as people might initially think.

Totally agree as one who felt that taking 2mg the other night caused a depressed mood the next day. Bradc, I am concerned with your history of depression and by taking 10mg, you would be very susceptible to this side effect.

Obviously, I didn't follow the rule but it is best to start with around .33mg of melatonin and slowly work your way up to the ideal dose.

49er

I don't feel that I have a bad history of depression. I am very much a happy person, but my mood is dictated by how awful I slept the night before. And here lately is the first time I felt that I was truly on the verge of depression; simply because I have been to countless doctors over the years and they all just take my vitals, pretend to listen to me for a couple minutes, tell me I'm depressed and write a RX for an anti-depressant. I have made huge changes in my life in order to "feel better," but it feels like the more things change, the more they stay the same.

Again, I do appreciate all the input. Last night I began working on changing some bad sleep habits and am continuing to research everyone's suggestions. I ordered a new mask (TAP PAP nasal pillow) this morning. Hopefully getting rid of the head harness will help. I truly envy the people that can sleep anywhere with no machines or aids and wake up refreshed, but maybe one day I will at least know what it's like to wake up refreshed. Nevertheless, the quest continues.

massive appetite by the end of the day, as well? Sounds almost exactly like my symptoms. Read up on atypical depression, you might find some answers.

As far as treatment, check up on the tryptophan, seem like you might need both a stimulant and a sedative, if the sedative isn't enough to keep you under at night.

ironhands wrote:massive appetite by the end of the day, as well? Sounds almost exactly like my symptoms. Read up on atypical depression, you might find some answers.

As far as treatment, check up on the tryptophan, seem like you might need both a stimulant and a sedative, if the sedative isn't enough to keep you under at night.

ironhands,

I am perplexed. If someone is having sleep issues, why would a stimulant be a good idea?

49er

49er wrote:

ironhands wrote:massive appetite by the end of the day, as well? Sounds almost exactly like my symptoms. Read up on atypical depression, you might find some answers.

As far as treatment, check up on the tryptophan, seem like you might need both a stimulant and a sedative, if the sedative isn't enough to keep you under at night.

ironhands,

I am perplexed. If someone is having sleep issues, why would a stimulant be a good idea?

49er

Because not all sleep issues can be resolved. When dealing with idiopathic hypersomnia (or really any hypersomnia), sleep phase disorders, or sedative resistant sleep maintenance insomnia, sometimes the only treatment is a stimulant as a compensatory measure if any light sedative, PAP, and proper sleep hygiene program yield no improvement.

Given the alternative of sedatives like the Z drugs (benzos, zopiclone, etc), it's the better option in terms of dependency and long term use effects. That, and the increased activity while on the stimulants may be enough to kick a deeper sleep into motion.

A REM suppressant might also be a decent option, if the dreams are exhausting, but since there's also the light sleeper issue...yeah..we're back into sedative territory.

unfortunately, not everyone's issues can be resolved by PAP, even if there is underlying apnea, and caring for the sleep portion of the day can only go so far. There comes a time when treatment needs to continue during the day, and if/when all other avenues haven't had success, a stimulant band-aid may be the only "solution".

Just throwing this out there with the myriad of other things that may or may not be something that could help you. When I read of people with frequent wakings I have to wonder about their legs. Do your wakings include restlessness and frequent position changes? Another thing that made me ask is when my legs are worse, my active brain is more problematic. They seem to go hand in hand. If you have what seems to be restless sleep and/or your legs move a lot during sleep, you might want to read up on PLMD or Periodic Limb Movement Disorder. What did your sleep study say about limb movements?

bradc,

You write

I don't usually have a problem getting to sleep initially. I try to keep a pretty consistent schedule of going to bed between 9 and 9:30 and getting up between 5:30 and 6. I do wake often, but I tend to fall back asleep pretty easily and my dreams continue.

but the four days of data that you've posted show the following run times on your machine:

• 4/14: Machine is turned ON at 21:14 and turned OFF at 5:35
• 4/20: Machine is turned ON at 3:29 and turned OFF at 6:49
• 4/21: Machine is turned ON at 22:56 and turned OFF at 5:15
• 4/22: Machine is turned ON at 22:53 and turned OFF at 2:27

Of the four random nights of data, only the first of the four fits your self described "pretty consistent schedule of going to bed between 9 and 9:30 and getting up between 5:30 and 6." So either your sleep schedule is not as consistent as you think it is or you are spending a lot of time sleeping without the mask on or both.

So which is it?

If the machine ON/OFF times are reasonably accurate descriptions of your actual bedtimes and wake up times, then working for a more consistent sleep schedule has the potential to address some of your sleep issues. Please understand that I say this as someone who struggles (daily) with the need to maintain something of a regular sleep schedule. It's a lot of work for me to try to make sure that I get to bed on time, but when I do, getting up (on time) is much easier and in general I feel better when my sleep schedule is more stable.

If, however, you are sleeping for significant periods of time without the mask on, that may go a long way towards explaining the ongoing daytime symptoms.

So you need to be honest with yourself: How irregular is your actual bedtime? How often are you up till 3:30ish? How often do you wake up before 5:00 and simply take the mask off so that you can just get back to sleep? Do you ever go to bed without the mask on and then put it on after you wake up in the middle of the night?


And you also need to think about this as well: Your desired sleep schedule (9:15 - 5:30) is an eight hour time in bed window, but when attempting to sleep during that time period you describe your sleep as fragmented (lots of wakes) with a lot of vivid disturbing dreams (not nightmares, but physically exhausting nonetheless). Which (together with the data you posted) raises the following questions:

1) Why do you want to wake up by 5:30? Is this something that you must do because of a job or school?

2) What time would you typically wake up on your own without any alarm clock in the room and without the artificial requirement of getting up to go to work or school?

3) When 9:30 PM comes around, are you physically tired and mentally tired, but not particularly sleepy?

4) If you were NOT trying to get up by 5:30-6:00 on most days, when would you choose to go to bed each night?

bradc,

I'm going to jump in here with my two cents concerning all the discussion about what supplements and/or meds might be appropriate in your case.

I'd urge some caution before jumping in with both feet looking for a magic set of pills to fix the sleep problems. I'm not saying that such things are totally unappropriate. Rather these things are seldom completely benign (including the OTC melatonin, l-tryptophan and 5HtP supplements) and you really want to make sure that what ever you decide to try has a decent chance of actually addressing some of the problems you are trying to fix.

You've written:

Since last October, I have changed my diet, I quit using tobacco, I only have an occasional beer, I have lost about 50 lbs, and I started using my CPAP again. However, I still have exhausting dreams and wake up everyday feeling fatigued. So, while my appearance my be better, I still feel miserable. I have to fight myself to keep my mask on during the night because I always want to sleep on my stomach, but eventually the mask comes off and I'm face first.

and

I wake up every day feeling more tired than the night before, light-headed, and fatigued almost like a hangover. I am constantly in a fog and have problems even coming up with words to finish a sentence. I am a light sleeper and wake up quite a bit during the night. I feel like I can take a nap at any point during the day, including right now while I'm writing this. I have awful dreams; not necessarily emotional dreams like family or friends dying, but physically exhausting dreams

and

I have never thought about "sleep hygiene." I am definitely not following some of those guidelines, namely watching TV and reading in bed.

and

I try not to drink anything within an hour or 2 of going to bed and I rarely drink any alcohol. I already picked up the RX of Prozac, only because I did not know what the rx was for until I had already paid and got home. But, I am not taking them because I have been put on enough anti-depressants to know that they do not help. I forgot to mention earlier that I have been taking 10mg of melatonin for about the last week, but I have never had much luck with it

and

robysue wrote: What other sleepy hygiene guidelines are not yet part of your life?

Watching TV and reading are the big ones. I will watch the clock at times, but that one is not as bad as the other 2. I get regular exercise, I have about as consistent of a routine as possible. I don't drink caffeine much at all. Actually, this was another drastic change as of late. I used to drink 1 to 2 pots of coffee every morning, but I quit drinking anything caffeinated all together.

and

As far as being tired, it is sun-up to sun-down. I am always sleepy tired and a lot of the times my feet feel like lead and my legs feel like jello, but this seems to be tied to how exhausting my dreams are, and how much I wake during the night. And I can most definitely tell a difference in my hunger throughout the day based on this.

It sounds as if there are several potentially separate issues going on with your overall sleep patterns. Among them are:

• Badly fragmented sleep with lots of wakes
• Dreams that leave you physically exhausted
• Difficulty relaxing the mind enough to allow sleep to come naturally without something like the TV or music to distract your thoughts
• Sleep behavior or habits that may be adding to the other issues (i.e. poor sleep hygiene)
• Problems tolerating the mask that may lead to you sleeping without it on your nose for a good bit of the night
• Excessive stress caused by both the lack of high quality sleep and the worrying about how bad your sleep is.
• On going problems with severe daytime sleepiness and fatigue

The thing is: These problems are not likely to be easily resolved by just taking supplements. You need to figure out whether there is a root cause for some of them and treat the root cause. And work on cleaning up the ones that have no real cause by paying more attention to your overall sleep hygiene. (And I mean that in a broad sense and not in a "rules enforcement" sense.)

First, kteague makes a good suggestion when she says that you need to consider the possibility of restless leg syndrome (RLS) and periodic limb movement disorder (PLMD). These are not the same sleep problem, but they both can manifest themselves with a sense of finding sleep physically exhausting because the body is indeed moving all night long. (It's possible that undiagnosed RLS or PLMD might be triggering some of those dreams where you're running around chasing things all night long.)

Second, I'm wondering if you are also dealing with a sleep phase problem---being forced (or trying) to sleep at a point in the 24 hour cycle that your body simply doesn't want to be asleep at. Or if you are trying to enforce sleeping longer than your body wants to sleep by staying in bed (and dreaming ...) Or if you might have some problems distinguishing wake "day dreaming" from sleep dreaming and your wake mind is inventing some exhausting daydreams that lead to the exhausting sleep dreams. In other words, I'm not sure your main problem is just simple sleep maintenance insomnia. And given that you say, "I feel like I can take a nap at any point during the day," it's also worth asking a doc if there's any chance that you have narcolepsy.

Third, you've got to deal with whatever CPAP comfort issues there are. One of the CPAP comfort issues is sleep position. You say "I have to fight myself to keep my mask on during the night because I always want to sleep on my stomach, but eventually the mask comes off and I'm face first." I know it sounds impossible, but it is possible to stomach sleep with a CPAP mask on your face. (Google "Falcon sleeping position"). So working out a way to sleep on your stomach with the mask on is extremely important. You've also mentioned getting the TAP PAP with the hopes that the fact that it has no headgear may help. That's a start. But you might also want to consider other very minimal masks as well. If you can tolerate nasal pillows, you may find the Bella Loops headgear for the Swift FX nasal pillows more comfortable than the traditional headgear. You may find the AirFit is more comfortable than the mask you are currently wearing. But there's more to CPAP comfort than the mask: Are you using a humidifier? Are you using a heated tube? In either case, if the air coming through the mask is too hot, too cold, too damp, too dry or too stale, then playing around with the humidifier and tube temperature settings is reasonable. Because if the air coming into the mask is any of those things, that's just another negative thing that your brain is likely to focus on when you are trying to get to sleep.

Finally, since you say that you are a "light sleeper" and that you really haven't thought very much about sleep hygiene, I'd suggest starting with sleep hygiene. There's a lot more to sleep hygiene than meets the eye, and it's not just a collection of "rules" to follow. One of the best sources I've ever read for self-help on sleep hygiene is Dr. Barry Krakow's Sound Sleep, Sound Mind. (And one of Krakow's "rules" is jnk's reminder: "[The] Trick is to try things without obsessing about them. The point is to lower sources of anxiety rather than making sleep itself an anxiety-inducing concept.") Krakow talks a lot about what you can do to teach yourself how to turn off an over active mind so that you can get some sleep. He also talks a lot about how to minimize the worry (and stress) when you find that you've woken up yet again in the middle of the night. And he takes the time to talk at length about the difference between feeling tired and exhausted and feeling sleepy. Finally he spends quite a bit of time talking about what good sleep is and clearls up a lot of misconceptions about what good sleep is.

So I would strongly urge you to first work your way through Krakow's suggestions and give "sleep hygiene" in this very broad sense (rather than just a collection of rules to follow) a month or two before turning to taking OTC dietary supplements or insisting to a doc that you need to be put on either a daytime stimulant or night time sedative or both.

If you are NOT making any significant progress getting the sleep to improve through self-help measures loosely described as "sleep hygiene", then it may be time to bite the bullet and start looking at pharmaceutical ideas that might help, including the OTC supplements melatonin, l-tryptophan and 5HtP, as well as prescription meds for sleep and/or prescription meds for increasing daytime alertness (i.e. stimulants). But I'd put that off until you've given the self-help sleep hygiene measures a chance to work.

kteague wrote:Just throwing this out there with the myriad of other things that may or may not be something that could help you. When I read of people with frequent wakings I have to wonder about their legs. Do your wakings include restlessness and frequent position changes? Another thing that made me ask is when my legs are worse, my active brain is more problematic. They seem to go hand in hand. If you have what seems to be restless sleep and/or your legs move a lot during sleep, you might want to read up on PLMD or Periodic Limb Movement Disorder. What did your sleep study say about limb movements?

To be honest, I have no idea what my sleep study said. I never received a copy of it, but I did call and am going to pick up a copy this afternoon. I do wake during position changes as if I am never comfortable, but I couldn't tell you anything about my legs. I feel most comfortable on my back. I can get to sleep on my side but am most relaxed on my stomach.

robysue wrote:
So you need to be honest with yourself: How irregular is your actual bedtime? How often are you up till 3:30ish? How often do you wake up before 5:00 and simply take the mask off so that you can just get back to sleep? Do you ever go to bed without the mask on and then put it on after you wake up in the middle of the night?


And you also need to think about this as well: Your desired sleep schedule (9:15 - 5:30) is an eight hour time in bed window, but when attempting to sleep during that time period you describe your sleep as fragmented (lots of wakes) with a lot of vivid disturbing dreams (not nightmares, but physically exhausting nonetheless). Which (together with the data you posted) raises the following questions:

1) Why do you want to wake up by 5:30? Is this something that you must do because of a job or school?

2) What time would you typically wake up on your own without any alarm clock in the room and without the artificial requirement of getting up to go to work or school?

3) When 9:30 PM comes around, are you physically tired and mentally tired, but not particularly sleepy?

4) If you were NOT trying to get up by 5:30-6:00 on most days, when would you choose to go to bed each night?

Robysue, those are all great questions. As far as the random nights of data, I just grabbed a few days and stuck them on here. A lot of the discrepancies in machine time have to do "bad sleep hygiene." I try to be in bed by 9 and am almost always in bed by 9:30, but I would lay down and read or watch TV, and sometimes fall asleep without the mask on or lay there for a while before I fall asleep. When I fall asleep without the mask and wake during the night, I'll put it on. I have to fight myself to keep my mask on throughout the night because I have always slept on my stomach and cannot sleep on my back, but sometimes the mask comes off during the night and I roll on to my stomach anyway. Like I said before, I have realized how poor my sleep habits are and am trying to change them. However, no matter what time I go to bed I am usually up by 6:30, but not later than 7 (even on days off) because if I am in bed past 7ish I tend to feel worse.

To answer your questions:
1. My job
2. Sometime around 6 to 6:30
3. I am always sleepy and physically tired
4. I'm not sure. I typically work 6 days/week so I'm pretty much ready for bed by 9 any night of the week.

What suggestions do you have for keeping my mask on when I can't get comfortable on my back? Thanks

robysue wrote:bradc,

I'm going to jump in here with my two cents concerning all the discussion about what supplements and/or meds might be appropriate in your case.

I'd urge some caution before jumping in with both feet looking for a magic set of pills to fix the sleep problems. I'm not saying that such things are totally unappropriate. Rather these things are seldom completely benign (including the OTC melatonin, l-tryptophan and 5HtP supplements) and you really want to make sure that what ever you decide to try has a decent chance of actually addressing some of the problems you are trying to fix.

Thank you very much for your input. I decided yesterday after watching the video you posted, that I was done with any medications for the time being. Granted, all I was taking was melatonin and benedryl every once in a while, but I am going to stick to sleep hygiene for a while. To be honest, I'm a little overwhelmed by the amount of responses and suggestions I have gotten, so I am going to continue researching all the suggestions and trying to improve my sleep hygiene.

What masks have you already tried and didn't do well with?

Give the Tap Pap a chance since you have ordered it. You can sleep in any position you want with it and that includes on your stomach. I do it all the time.
Pretty much any of the nasal pillow masks do well with any position of sleeping.
In terms of a nasal cushion type of mask...the newer cushions that don't use a plastic shell to hold the cushion also are easy to sleep in any position...like the Swift FX Nano or the Respironics Wisp.

bradc wrote:What suggestions do you have for keeping my mask on when I can't get comfortable on my back?

Also...check out your bed pillow. Is it pushing on your mask? You might look at one of those special cpap pillows with cut outs on the side for masks or use something like I use which is a buckwheat hull pillow and I just move the hulls to make a spot for the mask to rest so nothing is pressing on it.

bradc wrote: Robysue, those are all great questions. As far as the random nights of data, I just grabbed a few days and stuck them on here. A lot of the discrepancies in machine time have to do "bad sleep hygiene." I try to be in bed by 9 and am almost always in bed by 9:30, but I would lay down and read or watch TV, and sometimes fall asleep without the mask on or lay there for a while before I fall asleep. When I fall asleep without the mask and wake during the night, I'll put it on.

OK. So you've identified two significant problems to work on:

1) You have an irregular sleep schedule (which feeds a lot of the miscellaneous sleep issues)

2) You are sleeping without the machine on for significant periods of time at least on some nights.

Thing is: CPAP is a full time thing---in order for it to work its magic, you really do need to have the mask on whenever you are asleep. I know that's not what "compliance" says, but it is what the people who get the most out of CPAP will tell you: If they sleep even briefly without their PAP, they tend to feel a whole lot worse.

I have to fight myself to keep my mask on throughout the night because I have always slept on my stomach and cannot sleep on my back, but sometimes the mask comes off during the night and I roll on to my stomach anyway.
...
What suggestions do you have for keeping my mask on when I can't get comfortable on my back? Thanks

First, it's a myth that the only way you can keep the mask on is to sleep on your back. A lot of us do not sleep on our backs.

Sleeping on one's tummy with a CPAP mask on is not exactly "easy", but it is far from impossible. (My Hubby has already started to figure out how to do this in his sleep; but he's a CPAP natural, unlike me.) I'd suggest googling something called the Falcon sleeping position. It looks like this:

It may help to have a CPAP pillow with a cutout for the mask to drop into. Or simply position your head right at the edge of your pillow so that the mask is not shoved out of place. And as the pics indicate, it may help to have an extra very thin pillow under the side with the bent leg.

Best of luck