Fractured sleep, Ambien, dial wingin' and other things

[robysue]

Avi,

When I first started having the vertigo, the vesibular system was fully checked out by a local ENT. The ENT prescribed a set of vestibular rehabilitation therapy and a full round of tests. Hearing tests, a cat scan, and an mri were all done. The ENT actually thought I had a rare problem with my semicircular ear canals in my inner ear---certainly the symptoms were a clear match for the condition and the hearing tests backed up the hypothesis, but the cat scan and mri showed the semicircular canals were intact. Other more common causes of vertigo were also eliminated through testing. With the history of migraines, the diagnosis became "migraine related vertigo" and the ENT sent me off to a neurologist who agreed that my chronic migraines had started to manifest themselves as vertigo. The vestibular rehabilitation helped me cope with the the vertigo when it was happening and treating the migraines initially brought the vertigo under control. And the vertigo stayed under control until late last year.

[Todzo]

Re DIET:
My current diet is lower in carbs than it used to be, but not (yet) strictly low carb. Some days it really is low carb and others it is not. Sleep problems do not seem to be correlated with diet, but I don't know for sure.

I've tried the raw honey trick in the past (about two years ago). Not sure it did anything, but honey has the advantage that it has no identifiable side affects. And at least it tastes good.

With diet I agree with those who move toward the “Paleo” diet of the way way yesteryear, the one that we got used to over the last million years or so. It is extremely hard to even think in terms of how they actually ate so many years ago considering how we eat today and what we have available to us today. I think they did eat meat but that is was on an occasional basis as it was hard to come by. Most of the diet was likely whole food plant based which is suggested by T. Colin Campbell[1] as the best diet. So in my diet I consider the following.

Meat protein is limited in terms of “how much” and in terms of where it comes from. The amount is varied with activity level and keyed to resistance training. I strive to find meat raised “free range” (not raised in a CAFO) and without growth hormones.

Added sugar limited to less than one hundred grams per day as recommended by Robert H. Lustig M.D.[2]. Considering your modest weight I think that you might consider reducing that a bit.

I pursue anti-inflammatory foods especially when I see that there are obstructive events in my data. I try to make myself aware of how much “room” my tongue has in my mouth as part of my “go to sleep” ritual. My tongue seems to be a pretty good indicator of of the presence of systemic inflammation for me. I believe that moving away from GMOs and “high chemical load” foods is wise.

I try to eat at least half vegetables and fruits with at least a third of that raw. All serves as good prebiotic material and the raw is likely probiotic. I eat many kinds of fermented foods. I do hope to foster a healthy microbiome.

I stay far away from processed foods and pursue whole foods. I believe that a processed “carb” does not come with the things we need to properly process that “carb” in our system. Good whole food in variety is more likely to do the true best for us[1].

I'm glad your diet works for you.

But I would NOT be able to sustain such a diet. My diet has been discussed ad nauseum elsewhere.

I'm sorry if I sound snarly, but:

I am at normal weight and have been my entire life. Until about a year ago, the triglycerides and cholesterol were normal. The doc's suggestions of trying to cut way back on carbs has been much harder to implement for me than I would ever have thought possible. I am now happy with trying to reduce the carbs without eliminating them since it allows me to eat some foods that actually taste good to me.

I am NOT interested in going to a Paleo diet or an extremely low carb diet---there is just not enough "allowed foods" that I like on such a diet.

I regret that this part of my post irritated you, that was certainly not my intent.

Yes eating well is different for every one. Our bodies are unique. What is well for me will not be well for you.

What both Dr. Lustig[2] and Dr. Campbell[1] do is to describe a basic strategy. Whole foods.

Dr. Lustig put it well saying simply “the fruit is good, the juice is bad”. He was working with a mother whose son had become wider than tall.

Dr Campbell did well I think to describe how the amount of vitamin C in an apple has some 1/200 or so of the effect it has if you take it separately rather than eat the whole apple. Campbell tells that we will never understand nutrition by way of our reductionist methodologies. I very very much agree. There are too many things going on at once for that to ever work!!!

I do believe that eating well is a life long adventure.


[1] http://www.amazon.com/China-Study-Compr ... 932100660/ http://www.amazon.com/Whole-Rethinking- ... 1937856240

[2] http://www.amazon.com/Fat-Chance-Beatin ... 0142180432

[Todzo]

And I am not willing to use a tanning booth because I do believe that they are inherently unsafe---at least for folks who burn easily (like I do) and who are at higher than normal risk of skin cancer (like I am). However, I also don't believe is slathering sunscreen on all the time.

Excellent point!!

In my case I tan very well and when I lived as a boy at a mile high doing a lot of summer swimming I got very dark!

The light in a tanning booth is a very warped spectrum. It is far from sunlight. I was amazed that it could “pink” me in about four minutes (note: pink when tanning means you went way to far!!!).

Those who are exposed occupationally to the sun do not seem to have problems with skin cancer. I believe that is because they are exposed to the UVB a bit at a time and become acclimated.

I keep the exposure in the tanning booth very very limited (2 minutes every other day). When the sun gets here I will use that and will watch the effects on my skin like a hawk. I think we really do need the sun but should very much respect it's ability to hurt us.

[Todzo]

Re: Headaches and TMJ:
The TMJ is under control, the headaches are problematic. The medication needed to take care of the migraine related vertigo triggers a large number of unacceptable side affects, but the vertigo is definitely has an adverse affect on the sleep.

It has been profoundly consistent that any headache I have will find my breathing levels too high and that reducing those breathing levels toward more eucapnic rates relieves the headache. I have taken the time to look into the research concerning cerebral blood flow and CO2 reactivity so no surprise to me.

There are many articles concerning cerebral blood flow and migraine.

Site some sources for me??? I'd be interested in learning more ..

At any rate much of the migraineous vertigo is triggered by things that are well known to trigger migraines in me: Sudden loud noises. Bright glaring light. A general visual overload---too much visual noise, such as walking down a grocery store aisle filled with brightly colored packages of all kinds of shapes and sizes. A general auditory overload---too much background noise buzzing around, a tv or radio left on in the other room that's on a different station than the tv or radio in the room I'm in, the volume of a TV or radio simply being too loud. Or, converserly, too much silence---which triggers my tinnitus kicking into overtime which then can trigger the vertigo. A room that's too hot. Forgetting to eat. Or getting too thirsty. Consuming some caffeine by mistake.

There are certainly articles on Migraine, indeed the cerebrovascular theory has been forever and is still in play[1].

From: Ainslie PN, Duffin J. Integration of cerebrovascular CO 2 reactivity and chemoreflex control of breathing: mechanisms of regulation, measurement, and interpretation. Am J Physiol Regul Integr Comp Physiol 296: R1473–R1495, 2009. First published February 11, 2009; doi:10.1152/ajpregu.91008.2008

From the abstract: (note: definitions of hypercapnea and hypocapnea added for clarity)

“Cerebral blood flow (CBF) increases with hypercapnia (blood carbon dioxide levels higher than normal) to wash out CO 2 from brain tissue”

“hypocapnia (blood carbon dioxide levels lower than normal) causes cerebral vasoconstriction, which reduces CBF”

“Cerebrovascular reactivity and ventilatory response to Pa CO 2 are therefore tightly linked, so that the regulation of CBF has an important role in stabilizing breathing during fluctuating levels of chemical stimuli.”

From page two paragraph two:

“Influence of Pa CO 2 on CBF: mechanisms of action. It is well established that the cerebral vasculature is profoundly affected by Pa CO 2 (30).”

“Increased CO 2 results in a relaxation of the vascular smooth muscle of all cerebral vessels, although the small vessels are the most responsive (213). By contrast, the vasoconstrictor effect of hypocapnia is unaffected by vessel size (213).”

So if you go just a bit hypercapnic the small vessels have a bit more circulation.

If you are eucapnic cell metabolism is best facilitated.

So I find I have a headache. I note my breathing level which I will very likely find high. I note the fact that the veins on the back of my hand, with the hand near heart level physically, are plumped (they are smooth when I am at my desk at eucapnic breathing levels). I probably am a bit stuffed up. If it is quiet cupping my hand over my ear I will probably be able to hear my heart beating sounding like someone knocking at a door (eucapnic – no sound – moving into hypercapnic “foosh foosh” - moving to very hypercapnic the knocking is like that of an engine with it's timing well off). SpO2 is likely to read 98% to 99% (my lowest heart rates working at my desk where I live come in consistently at SpO2=95% or at 96% if doing moderate exercise).

So I do the eucapnic breathing techniques and move the SpO2 to 95% while observing all of the other symptoms go away - and the headache goes away – very consistently. Headaches are a rare thing anymore for me as is a stuffy nose. I do so love the smell of the flowers in the spring time which I missed for years. I do enjoy the lack of headaches which, along with the stuffy nose, caused me to run to the pharmacy each spring.

As I looked at your list I was reminded of the times when I would find my breathing too high. Over time I began to see that there were events and situations which preceded the events. They are much like your list.

things that are well known to trigger migraines in me:

Sudden loud noises.

Oh yes. My nerves are even now still frayed from an assault and robbery. Loud noises were one of the first things I noted would cause me to move to a time of over breathing. Now a loud noise now means “be watchful – and – make sure your breathing is in check”.

Bright glaring light.

Now that I think about it I often found the breathing running over in brightly lit rooms. Interesting.

A general visual overload---too much visual noise, such as walking down a grocery store aisle filled with brightly colored packages of all kinds of shapes and sizes.

Yes if I get excitedly expectant, amazed, in a bit of wonderment about what is going on my breathing tends to take off.
This also reminds me of the fact that food always excites me. For years it has been that I would always get stuffed up during a good meal, always. I would have to find a corner to blow my nose and get all cleared out which I really wanted to do because food tastes better when your sense of smell is not impeded. Well now a stuffy nose is often the first sign to me that I am over breathing. When I started training with the pulse oximeter I would always find the reading at 98% and even occasionally 99% while eating a meal. After years of training now, and likely because I really do like good food tasted with a clear nose I over breath much less while consuming food and rarely need a tissue.

A general auditory overload---too much background noise buzzing around, a tv or radio left on in the other room that's on a different station than the tv or radio in the room I'm in, the volume of a TV or radio simply being too loud.

On a trip recently the room air conditioning was simply loud. Breathing control already exacerbated by the CPAP was difficult. I did not sleep well that night.
I love the quiet of my new city and home.

A room that's too hot.

Over the years I have read many stories and studies which showed more apnea during hot spells. For myself I do notice that during the “change of the seasons” when things start to really look like spring breathing is harder to control. Definately during hot spells!! And strangly during the first colder weather as well.
Perhaps it has something to do with the air “feeling” different and so messing up the volume calculations.
At any rate I do hope you find a good solution to the migraines!!

[1] Examples obtained via Google and/or Google Scholar and/or PubMed:
http://www.uphs.upenn.edu/news/News_Rel ... 07/willis/

http://onlinelibrary.wiley.com/doi/10.1 ... 2/abstract

http://stroke.ahajournals.org/content/43/4/987.short

[munkyBeatz]

First of all, I would like to state that you should pay a visit to your board certified sleep specialist to address your issues.

For the most part I can infer from your first post that your sleep related issues extend beyond the scope of the PAP device, and your overall life needs to be evaluated collectively versus focusing on one single area like the PAP. [medical conditions "including pain", medications, Sleep HYGIENE, etc.]

As for your PAP device, I'm guessing you were placed on BiPAP due to compliance/comfort. The fact that you're on an auto-BiPAP perplexes me a bit with your settings, as it just doesn't seem necessary with MaxIPAP: 8cm and MinEPAP: 4cm. The minimum pressure support utilized by labs/docs and recommended by the AASM is 4cm. [Pressure support is the difference between iPAP and ePAP, so 8-4=4] With your current settings you pretty much have an overkill device, with the lowest, pretty much fixed pressure setting. The only time your machine will be lower is during the ramp period, and obviously it'll never go higher as the max set is 8cm. I just found that interesting, but it doesn't really matter as you've already got the machine and fixed pressures are far more preferable from a clinical standpoint anyways. A lot of patients "think" that an autoPAP with a range of pressures is better, but it's really only 'necessary' for someone with a higher pressure [>15cm] and Pt inability to acclimate to the higher pressures that may only be required during REM sleep or in a certain position; and mostly just for an initial acclimation period of a few weeks/months.

Machine AHI: You mention your AHI is "creeping up" when looking at the data. This is something you really shouldn't be concerned with at all. The AHI from the machine is called a Residual AHI, and is not viewed in the same manner as an AHI from a sleep study by clinicians. Even if it were an accurate AHI, <5/hr is negligible and considered within norms because of that. The residual AHI is used to give a ballpark figure of sorts, and a clincian will not want to use it to adjust pressure unless it's at least >10/hr and some journals even state it shouldn't be utilized to change pressure unless >15/hr. The machine cannot tell the difference between a true event, and say a short period following an arousal that mimics an event. Basically, don't place so much weight into the AHI reading from your machine. With your readings, it's doing what it's supposed to be doing.

Aerophagia: To help alleviate these symptoms I generally always ask patients to sleep with their upper body elevated slightly and that helps a lot. Also, the fact that you're on a nasal mask and experience this can be indicative some possible mouth breathing at times, if it's a continuing issue. Usually when a patient experiences aerophagia symptoms, switching to a full face mask alleviates it as well.

Insomnia: Your issues you report in regard to insomnia appear to be heavily related to poor sleep hygiene. Two things that stood out to me were [1.] Variable Bedtime and [2.] Time awareness.

[1.] You have a set wake time, which is good, but the fact that your bedtime is variable due to you waiting until you're "tired enough" is not good. Your body naturally produces melatonin on a nightly basis, which is how your body triggers sleepiness. However, melatonin wears off quickly and if you go to bed too long after this it increases likelyhood of delayed sleep onset. Your body only produces this once a night, and will not produce it again for 24 hours. So, if you have a set bedtime your melatonin production will naturally align with that time frame, and lead to increased chance of falling asleep without use of sleepaides.
[2.] Time Awareness. The fact that you are able to record the exact time you wake, how long you were awake, etc; is also indicative of poor sleep hygiene. You should have all clocks, if any at all, positioned in a way that you cannot see them easily from bed. If it's easily viewable from bed, you end up looking at the time even when you didn't intend to. When you wake and immediately, whether intentional or inadvertently look at the time it begins to weigh heavier on your mind. This is the number one cause of sleep maintenance issues in the US. You can become upset thinking "I've been up for the last hour"...."I only have 3 hours left until I need to be up for work". My advice is simple on this, don't worry about the time, it's not going to help you sleep easier/better to know the time. Even when keeping a sleep journal, you should only be able to denote the time you went to bed and the time you woke for the day. You should only be able to denote how many wake periods you had and what the length of each wake period 'felt' like. [ I went to bed at 10pm and got up at 08:30am. I woke 3 times, with 2 about 5mins long and 1 that felt like an hour long]
I'm guessing as well you have other areas in sleep hygiene that should be addressed, and highly recommend you do address them.
More issues specific to yourself need to be evaluated by your sleep physician to ascertain just what is the "big issue" that needs to be addressed.

Lastly, you might consider discussing alternative treatment methods for OSA with your board certified sleep specialist if you believe tolerance to PAP to be your biggest issue. Since I'm guessing you have a mild case of OSA, since your pressures are relatively low, alternative treatment may be a good fit. Two popular alternatives are a mandibular adjustment device [TAP Device] and Provent nasal devices. Those are only two examples, but give you an idea. For a patient with mild OSA, those types of alternative therapy can have great results if they are having trouble with PAP. I would have a lot more questions and info for you, but they would be specific to yourself and not generalized as much. Your sleep specialist will have those same questions, and that's why you should see your specialist.

[munkyBeatz]

I have alpha wave intrusion.......which means just as you're reaching a lower stage of sleep, your brain wakes you up. There's a med for this, but I don't think it has good results. My doc really didn't want to put me on it.

Alpha intrustion is simply alpha wave activity that is present during REM sleep periods, and is usually indicative of pain. Many arthritic and pain management patients exhibit this. There's not a specific drug that helps to reduce alpha intrusion, as it's generally present as a result of pain. It can also be present in certain patients taking certain medications for depression/bipolarism/etc.

[Sludge]

I have alpha wave intrusion.......which means just as you're reaching a lower stage of sleep, your brain wakes you up. There's a med for this, but I don't think it has good results. My doc really didn't want to put me on it.

Alpha intrustion is simply alpha wave activity that is present during REM sleep periods, and is usually indicative of pain. Many arthritic and pain management patients exhibit this. There's not a specific drug that helps to reduce alpha intrusion, as it's generally present as a result of pain. It can also be present in certain patients taking certain medications for depression/bipolarism/etc.

Actually, alpha intrusion is more closely associated with slow wave sleep (consequently, it is commonly referred to as "alpha-delta pattern").

Some folks are using Xyrem to treat alpha intrusion, but that's a pretty big hammer.

[49er]

munkyBeatz,

Do I infer correctly from this post that you are some type of medical professional?

And do you have a link to specific guidelines that state that patients do better with fixed pressures lower than 15 cm? I mean no disrespect but it concerns me that you are making generalizations that I don't see supported by various postings on this website in which people have used data to fine tune their pressures.

You're also doing that with AHIs in assuming that everyone who has one below 5 is normal. Many folks don't feel well until theirs is a sub 1. A good clinician looks at the situation of the individual patient and doesn't shove them into preconceived generalities.

However, if you want to go by the clinical guidelines, any AHI above 5 is not normal. So I do hope that if you have a patient who doesn't feel well with an AHI > 5, that you wouldn't make them wait for a pressure change until it is over 10.

You're also making a fundamental error that I find shocking in assuming that low pressures equal mild apnea when there is absolutely no correlation whatsoever. Many people with high pressures can have mild apnea and vice versa.

Again, I mean no disrespect. But in my opinion, your post is a perfect example of why so many people find self help boards like this one alot more helpful than going to a sleep medicine professional.

49er

First of all, I would like to state that you should pay a visit to your board certified sleep specialist to address your issues.

For the most part I can infer from your first post that your sleep related issues extend beyond the scope of the PAP device, and your overall life needs to be evaluated collectively versus focusing on one single area like the PAP. [medical conditions "including pain", medications, Sleep HYGIENE, etc.]

As for your PAP device, I'm guessing you were placed on BiPAP due to compliance/comfort. The fact that you're on an auto-BiPAP perplexes me a bit with your settings, as it just doesn't seem necessary with MaxIPAP: 8cm and MinEPAP: 4cm. The minimum pressure support utilized by labs/docs and recommended by the AASM is 4cm. [Pressure support is the difference between iPAP and ePAP, so 8-4=4] With your current settings you pretty much have an overkill device, with the lowest, pretty much fixed pressure setting. The only time your machine will be lower is during the ramp period, and obviously it'll never go higher as the max set is 8cm. I just found that interesting, but it doesn't really matter as you've already got the machine and fixed pressures are far more preferable from a clinical standpoint anyways. A lot of patients "think" that an autoPAP with a range of pressures is better, but it's really only 'necessary' for someone with a higher pressure [>15cm] and Pt inability to acclimate to the higher pressures that may only be required during REM sleep or in a certain position; and mostly just for an initial acclimation period of a few weeks/months.

Machine AHI: You mention your AHI is "creeping up" when looking at the data. This is something you really shouldn't be concerned with at all. The AHI from the machine is called a Residual AHI, and is not viewed in the same manner as an AHI from a sleep study by clinicians. Even if it were an accurate AHI, <5/hr is negligible and considered within norms because of that. The residual AHI is used to give a ballpark figure of sorts, and a clincian will not want to use it to adjust pressure unless it's at least >10/hr and some journals even state it shouldn't be utilized to change pressure unless >15/hr. The machine cannot tell the difference between a true event, and say a short period following an arousal that mimics an event. Basically, don't place so much weight into the AHI reading from your machine. With your readings, it's doing what it's supposed to be doing.

Aerophagia: To help alleviate these symptoms I generally always ask patients to sleep with their upper body elevated slightly and that helps a lot. Also, the fact that you're on a nasal mask and experience this can be indicative some possible mouth breathing at times, if it's a continuing issue. Usually when a patient experiences aerophagia symptoms, switching to a full face mask alleviates it as well.

Insomnia: Your issues you report in regard to insomnia appear to be heavily related to poor sleep hygiene. Two things that stood out to me were [1.] Variable Bedtime and [2.] Time awareness.

[1.] You have a set wake time, which is good, but the fact that your bedtime is variable due to you waiting until you're "tired enough" is not good. Your body naturally produces melatonin on a nightly basis, which is how your body triggers sleepiness. However, melatonin wears off quickly and if you go to bed too long after this it increases likelyhood of delayed sleep onset. Your body only produces this once a night, and will not produce it again for 24 hours. So, if you have a set bedtime your melatonin production will naturally align with that time frame, and lead to increased chance of falling asleep without use of sleepaides.
[2.] Time Awareness. The fact that you are able to record the exact time you wake, how long you were awake, etc; is also indicative of poor sleep hygiene. You should have all clocks, if any at all, positioned in a way that you cannot see them easily from bed. If it's easily viewable from bed, you end up looking at the time even when you didn't intend to. When you wake and immediately, whether intentional or inadvertently look at the time it begins to weigh heavier on your mind. This is the number one cause of sleep maintenance issues in the US. You can become upset thinking "I've been up for the last hour"...."I only have 3 hours left until I need to be up for work". My advice is simple on this, don't worry about the time, it's not going to help you sleep easier/better to know the time. Even when keeping a sleep journal, you should only be able to denote the time you went to bed and the time you woke for the day. You should only be able to denote how many wake periods you had and what the length of each wake period 'felt' like. [ I went to bed at 10pm and got up at 08:30am. I woke 3 times, with 2 about 5mins long and 1 that felt like an hour long]
I'm guessing as well you have other areas in sleep hygiene that should be addressed, and highly recommend you do address them.
More issues specific to yourself need to be evaluated by your sleep physician to ascertain just what is the "big issue" that needs to be addressed.

Lastly, you might consider discussing alternative treatment methods for OSA with your board certified sleep specialist if you believe tolerance to PAP to be your biggest issue. Since I'm guessing you have a mild case of OSA, since your pressures are relatively low, alternative treatment may be a good fit. Two popular alternatives are a mandibular adjustment device [TAP Device] and Provent nasal devices. Those are only two examples, but give you an idea. For a patient with mild OSA, those types of alternative therapy can have great results if they are having trouble with PAP. I would have a lot more questions and info for you, but they would be specific to yourself and not generalized as much. Your sleep specialist will have those same questions, and that's why you should see your specialist.

[BlackSpinner]

First of all, I would like to state that you should pay a visit to your board certified sleep specialist to address your issues.

.

From this I gather you have massive reading comprehension issues or couldn't be bothered to read past the first paragraph in the first post.

[kaiasgram]

From this I gather you have massive reading comprehension issues or couldn't be bothered to read past the first paragraph in the first post.

+1
Additionally, the lack of education/understanding displayed in munkyBeatz's posts makes it disturbing that this person works in a sleep lab:

you have a mild case of OSA, since your pressures are relatively low

Alpha intrustion is simply alpha wave activity that is present during REM sleep

From 2012:

My background, to show I know what I'm talking about, includes 6.5yrs experience as a Registered Polysomnographic Technician and am currently the Technical Director of Operations for a sleep lab in the DFW area of Texas.

[ems]

[quote="munkyBeatz"]Since I'm guessing you have a mild case of OSA, since your pressures are relatively low,...quote]

You work in a sleep lab and can actually say this? During my sleep study it was concluded that I have OSA - 45.3 events per hour. 74.8 events per hour in REM, 42.8 events per hour in NREM. My pressure is 6/9 and my AHI is never above 2 and usually 1.8 or so. I'd hate to think where you learned this; definitely don't think it was Duke or Stanford.

[robysue]

First of all, I would like to state that you should pay a visit to your board certified sleep specialist to address your issues.

Numerous trips to four different sleep docs in the last 3 1/2 years have failed to resolve my issues. Sleep doc #4, whom I actually like, has been honest with me: He has no real idea why my sleep remains fragile, and he has told me to experiment as I see fit with the BiPAP, but that he also doesn't think I'll find anything more comfortable than the current tight Auto range I now use. He's also prescribed a very small dose of Ambien to take the edge of the machine's sensory overload at bedtime, but understands why I dislike taking it every day---the Ambien hangover and the fact that it constipates me are acknowledged as very real (and unwelcome) side effects. Hence he is content with me not taking every night.

For the most part I can infer from your first post that your sleep related issues extend beyond the scope of the PAP device, and your overall life needs to be evaluated collectively versus focusing on one single area like the PAP. [medical conditions "including pain", medications, Sleep HYGIENE, etc.]

This has been done repeatedly in the last 3 1/2 years. I went through 6 months of intense CBT for Insomnia. It brought the beast somewhat under control, but it also left me with a near inability to spend much more than 6 hours in bed; more than that, and I start tossing and turning and the sleep efficiency goes down and I feel pretty bad the next day.

As for your PAP device, I'm guessing you were placed on BiPAP due to compliance/comfort. The fact that you're on an auto-BiPAP perplexes me a bit with your settings, as it just doesn't seem necessary with MaxIPAP: 8cm and MinEPAP: 4cm. The minimum pressure support utilized by labs/docs and recommended by the AASM is 4cm. [Pressure support is the difference between iPAP and ePAP, so 8-4=4]

Whether it makes sense or not, the aerophagia on CPAP and APAP during the first three months of therapy were excruiating, even at low pressures.

Prior to starting CPAP (at a fixed pressure of 9cm), I was a fully functioning adult with a few daytime fatigue issues and moderate-to-severe hand and foot pain on waking. I had the occasional mild insomnia and a semi-reasonable sleep schedule from (roughly) 11:30 to 7:30 on weekdays. Except for sleeping in on week days, my sleep hygiene was pretty decent. When the insomnia was acting up, tightening up a small bit on sleep hygiene would bring the insomnia under control in a few days.

My first sleep doc started me out at 9cm of fixed pressure. The tech who set the S9 up also set EPR = 3. And I was waking up with a basket ball in my stomach, sometimes multiple times a night. And there was no mouth breathing involved---at least if you believe the leak lines. Even more troubling, I also experienced a serious, prolonged and steep crash in terms of daytime functioning and quality of life: Within the first week of PAP therapy I became a non-functioning person who was falling asleep constantly during the daytime---a person who could no longer keep up with all the things I needed to do at work as a college professor. I also found myself falling asleep for a few seconds while I was lecturing at the blackboard. I became terrified of falling asleep while driving. People at work were commenting on how horrible I looked---I literally looked shell shocked. And I could not longer reliably get to sleep in my own bed or stay asleep in my own bed due to severe stomach pain and plain old fashioned psychological aversion to the device that was causing me such misery. The current insomnia settled in on Day 3 of PAP therapy.

And keep in mind that nothing had changed except for starting PAP therapy.

By the end of a week or ten days, hubby took things into his own hands and called the doc because I was too emotionally distraught to do so for myself. And the first of many "semi-emergency" appointments with the sleep doc's PA took place. She's the one who ordered a switch to APAP for a week or two of autotitration with a wide open range of 4-20 cm. She's the one who saw the data from that two weeks of data that indicated my 95% pressure was somewhere around 8cm, but who also listened to me when I said the stomach was feeling better on APAP than it had on CPAP and was willing to leave me on APAP at a range of 4-6 cm.

But while the aerophagia was less intense, it still was around. And the insomnia continued to grow. After another six weeks of pure agony for me, the PA talked to the sleep doc (whom I never saw after the one pre-CPAP visit where he insisted that I did not need an efficacy data machine and that I would "feel better in two weeks") The only idea they could come up with was a BiPAP trial. Which required yet another sleep test. I consented to the sleep test and a possible trial of BiPAP.

On that sleep test, I thought I sleep for maybe 3 1/2 - 4 hours of the 6 1/2 hour "time in bed" window. The EEG evidence showed I slept for 111.5 minutes---less than 2 hours of sleep. In other words, the insomnia was worse than even I thought it was. But notably, the time I was awake in bed trying to get to sleep (and thinking I was asleep) were much more comfortable than I'd been on any night on PAP, including my first CPAP titration study. The pressure recommendations coming out of those 111.5 minutes of sleep were: IPAP = 8; EPAP = 6. And odd pressure combination for BiPAP to be sure, but regardless, it felt better and more natural to me than using my S9 CPAP/APAP with EPR at any point.

While shopping for the bi-level machine and working hard to try to figure out whether an S9 VPAP would soon be released or not, I decided to switch the S9 APAP back to fixed CPAP mode with a pressure of 8 cm and EPR = 2 in order to try to mimic the pressure levels of the yet to be obtained bi-level machine. On a fixed pressure of 8cm with EPR =2, the aerophagia came back, but was not as intense as it had been when I first started out. After a month of careful research, I gave up on the idea of waiting for the S9 VPAP and went ahead an ordered a PR System One BiPAP (Auto) from the DME. It was set up in fixed pressure mode as per the sleep study: IPAP = 8; EPAP =6. Bi-Flex intensely bothered me---it felt as though the machine was trying to force me to inhale before my exhalation was complete, and I turned Bi-Flex off before starting therapy that first night on BiPAP.

Insomnia continued to plague me as did aerophagia. However, the aerophagia was less painful than it had been on CPAP or APAP. On Dec. 31, 2010, right at 3 months into PAP therapy, I had yet another appointment with the PA, but at this appointment, I was finally comfortable dealing with the machine at night to focus the appointment on the insominia rather than the aerophagia and how much my inability to function during the daytime had grown on PAP. It was a productive meeting and we declared war on the insomnia.

One part of the CBT-I was keeping a sleep log. There were enough comments of the sort "aerophagia woke me up last night" for the PA to order yet another sleep test about 5 weeks into the CBT-I. That night in the lab was the first genuinely decent night's sleep I'd had since starting PAP 4 1/2 months earlier. It was also apparently a rather mild night for the OSA and the resulting pressure recommendations were IPAP = 7; EPAP = 4. So the pressures were switched. And the painful aerophagia finally went away But within a week or two at 7/4, hubby was reporting that the snoring was back on most nights and the machine AHI numbers went from the 0.5-1.5 range to the 4.0+ range. In consulting with the PA, we decided that in light of the aerophagia problems at 8/6 and the increase in snoring and AHI at 7/4, that it was worth switching to Auto mode with the current range of min EPAP = 4; max IPAP = 8. Effectively this means 4 <= EPAP <= 6 and 6 <= IPAP <= 8. This range has minimized the aerophagia and (for the most part) has kept the AHI to below 2.5 or so. So it's clear that there really is no real need for me to use higher pressures to manage the OSA.

As for the insomnia: The PA was quite good at directing CBT-I, and I was happy enough with the slow progress I was making. However, I was also now dealing with chronic migraines and migrainous vertigo, both of which had also grown worse since starting PAP. And the meds for the migraines were causing a lot of side effect issues, including affecting my sleep. There was a lot of two steps forward one to one and half steps backwards progress on the insomnia.

As I said, I was happy enough with the slow progress I was making. But the sleep doc (or the PA) decided that I was not getting better fast enough and that I was wasting too much of the PA's time. And on a regularly scheduled appointment for the CBT-I, I was fired as a patient by a new, different PA who was supposed to just sit in on the meeting (or so I thought), but was really in control of it. It was a humiliating experience.

Since then? I've continued to PAP every night and the insomnia has waxed and waned through the months. I've had some 3-4 month long periods where I have felt the insomnia is pretty well under control, and then things start to deteriorate and I have to work hard on bringing everything back under control. The last year has been touch and go: My sleep really started to deteriorate in November 2012 and by last summer it was pretty bad---bad enough for the new sleep doc to order more sleep tests. It got a bit better once I started on Ambien, but it's never been as good this winter as it was during the period from Aug 2011 through Oct 2012.

[robysue]

First of all, I would like to state that you should pay a visit to your board certified sleep specialist to address your issues.

.

From this I gather you have massive reading comprehension issues or couldn't be bothered to read past the first paragraph in the first post.

Thanks for pointing this out. I really have been wondering if munkyBeatz actually read anything of what I've written.

[robysue]

With your current settings you pretty much have an overkill device, with the lowest, pretty much fixed pressure setting. The only time your machine will be lower is during the ramp period, and obviously it'll never go higher as the max set is 8cm. I just found that interesting, but it doesn't really matter as you've already got the machine and fixed pressures are far more preferable from a clinical standpoint anyways. A lot of patients "think" that an autoPAP with a range of pressures is better, but it's really only 'necessary' for someone with a higher pressure [>15cm] and Pt inability to acclimate to the higher pressures that may only be required during REM sleep or in a certain position; and mostly just for an initial acclimation period of a few weeks/months.

If the choice is "give up" or switch to "auto", then is "auto" really "unnecessary"? That's basically the choice I faced in Fall 2010 and Spring 2011. Family and friends were encouraging me to just give up the damn machine since I was in such visible agony from trying to make this crazy therapy work.

Machine AHI: You mention your AHI is "creeping up" when looking at the data. This is something you really shouldn't be concerned with at all. The AHI from the machine is called a Residual AHI, and is not viewed in the same manner as an AHI from a sleep study by clinicians. Even if it were an accurate AHI, <5/hr is negligible and considered within norms because of that. The residual AHI is used to give a ballpark figure of sorts, and a clincian will not want to use it to adjust pressure unless it's at least >10/hr and some journals even state it shouldn't be utilized to change pressure unless >15/hr. The machine cannot tell the difference between a true event, and say a short period following an arousal that mimics an event. Basically, don't place so much weight into the AHI reading from your machine. With your readings, it's doing what it's supposed to be doing.

If the AHI were creeping up and I was NOT feeling any worse, it would NOT be an issue. Or if I was talking about a few random nights with higher than usual AHI, it would not be an issue. But there's a long term trend that's been upward---and in Feb. I had more 4.0+ AHI's than I've in the last 2 years of PAPing, and more 3.0+ AHI nights than I've had in the last year of PAPing. And as the AHI has been creeping up, the daytime functioning has been going down.

And so, regardless of what you think, I believe a long term trend in an increasing AHI taken together with an increase in daytime fatigue and brain fog AND an increase in insomnia symptoms together indicate that my sleep is heading in the wrong direction, rather than the right one. And yes, I'm aware of the problem of looking at the data and letting that drive how you feel during the day. I've gotten to where I will NOT look at the data first thing in the morning when I feel awful when I wake up. That way I know I'm not simply responding to "bad data". And judging from old sleep logs, there's a weak positive correlation between feeling worse and having an AHI > 3.5 for me. Not enough for me to insist on an appointment with the doc now, but enough where I would really prefer to have the AHI < 3 most days.

Aerophagia: To help alleviate these symptoms I generally always ask patients to sleep with their upper body elevated slightly and that helps a lot. Also, the fact that you're on a nasal mask and experience this can be indicative some possible mouth breathing at times, if it's a continuing issue. Usually when a patient experiences aerophagia symptoms, switching to a full face mask alleviates it as well.

Unless you can mouth breathe without any increase in leaking, mouth breathing is NOT the issue. My leak lines on the S9 AutoSet were darn near perfect when the aerophagia was at it's worst. My System leaks are pretty consistently at or just below the expected leak for my Swift FX at my pressures; on the occasional night where there is some evidence of (minor) mouth breathing, the aerophagia is no worse than a night with a perfect line.

Switching to a FFM is not something I want to do, nor do I see it as necessary. When trying a nasal only mask, I could not get it over my nose without triggering severe sneezing---as in 20+ times in a row. And not being able to scratch the top of my nose does trigger issues for me.

[robysue]

Insomnia: Your issues you report in regard to insomnia appear to be heavily related to poor sleep hygiene. Two things that stood out to me were [1.] Variable Bedtime and [2.] Time awareness.

Variable bedtime IS an issue---because I'm just tired of fighting my body NOT wanting to go to bed at my formal bedtime of 1:30AM.

Time awareness not an issue: I don't clock watch during the night.

The wake times, however, are well documented in my Sleepy Head data because I routinely turn my machine off and back on when I wake up uncomfortable during the night. (I do this without turning a light on and there is no clock on the table with the PAP.) I know my insomnia is under control when I look at the data and I say to myself, I sure don't remember any of those 2-4 wakes last night.

Last night's a good example: I went to bed sometime around 3:00 am. (I had been reading in the living room and NOT looking at a clock while I was enjoying reading.) I fell asleep (without an Ambien) quite quickly--=within 5-10 minutes. I remember one wake in the early morning; it was probably around 7:30 when hubby was stirring around and it was light outside. And after hubby got up, I had no trouble falling back asleep until I woke up a few minutes before 9:00 this morning. The Sleepy Head data indicates there was another wake much earlier in the night because there's another off/on cycle with a SleepyHead timestamp of 4:36 when I obviously woke up for a few minutes and turned the machine off and then back on, but I have no memory of that wake. And so in my eyes, that wake doesn't really "count" as a problem to worry about, particularly since it's timing is right for nothing more than a brief post REM wake.

In other words, last night is a GOOD example of what a GOOD night's sleep feels like to me: I feel as though I slept continuously---so that middle of the night wake that I don't remember is obviously not a problem, and the early morning one is easily explained and I got back to sleep after hubby got up with no trouble. I woke up feeling pretty good this morning and I was ready to get out of bed around my normal 8:30-9:00 AM wake up time. And the energy levels have been decent today. If most of my nights were like this, I'd say I was sleeping very well indeed.

But most of my nights are not anywhere near as GOOD as last night. Fortunately, most of my nights are not as BAD as the night I had two nights ago. I was sleepy and tired at 1:30, but some what keyed up about a family emergency that's brewing. I went ahead an took an Ambien and hit the sack at 1:30AM. I fell asleep within 5-10 minutes because of the Ambien and being naturally sleepy as well. When I woke up the next morning, I woke up feeling tired and exhausted at 8:00, but uncomfortable enough (aerophagia) to know that I was not going to be able to get back to sleep quickly, so I just went ahead and got up for the day. On waking I remembered one very long restless period during the night where I thought about getting out of bed, but didn't. And I also remembered one or two other shorter wakes besides the restless period; whether it was one or two wakes in my memory was fuzzy because it was also not at all clear what the relation of one of these wakes was to the restless period---it might have just been part of it. And the whole day was quite difficult---brain fog was one issue, and plain old physical fatigue was another. I finally got around to looking at the data in the early evening and was not overly surprised by what it showed in terms of wakes: There were a total of five times I turned the machine off and back on during the night, and sure enough, three of those wakes occurred in a one hour period. The Sleepy Head timestamps indicated I was awake enough to turn the machine off and back on at 2:29, 2:50, and 3:29. Prior to looking at the Sleepy Head data, I had no idea of when this restless period occurred, nor did I have a clear idea that it might have been close to an hour in length---I really thought it was about 30 minutes long or so. But I have no doubts that those wakes and the restlessness during that period goes a long way in explaining how rotten I felt and functioned during the entire day.