What to do if Apnea tests shows up negative?

Enchanter · Post by **Enchanter** » Mon Apr 20, 2015 12:08 pm

My doctor's appointment is in 2 days. The thing is I'm so used to all my tests showing up normal. Last time tested cholesterol, Fasting glucose, thyroid, blood pressure, calcium levels, testosterone, DHEA, lipids, etc.. The doctor was really impressed with my results and said everything looked pretty good. Winked and told me to come back and see him in 5 years or so. I live a healthy lifestyle with a lot of exercise and so my test results showed up good.

However, the thing that affects me and fatigues me starts with a bad nights sleep. I wake up and never fully recover. Getting to sleep at an appropriate hour is hard enough as is. But even when I do, I don't get a restful nights sleep. I wake up and have a major hangover feeling and even when I don't feel as bad, I know that I've never truly recovered. I haven't woke up feeling overly fresh in many many years. But I don't nap, because napping would mean I could fall asleep at will, which is not a possibility.

So with this problem continuing to persists... If I'm not getting a good nights sleep but the tests show I'm getting a good night's sleep on paper, then where would I go from there? I'm ALWAYS preparing for the next step. But I'm going to take this step and get the tests done. It's just that I'm so very used to being confused and not knowing what my problem is. My friends say I'm fine and just crack a joke, but deep down I know it's not in my head. You're supposed to wake up feeling pretty well, not like you're trying to recover constantly from a hangover. It doesn't matter what I did the night before. I don't party. It doesn't matter how little I eat or if I eat nothing. The problem continues no matter what. I never recover from it during the day either, at least not fully.

BlackSpinner · Post by **BlackSpinner** » Mon Apr 20, 2015 12:13 pm

There are many things being tested and you can request a copy.
It is not always about AHI there are other issues.

Enchanter · Post by **Enchanter** » Mon Apr 20, 2015 12:23 pm

BlackSpinner wrote:There are many things being tested and you can request a copy.
It is not always about AHI there are other issues.

Sure, but the issue is that isn't every night different? What if the numbers vary? How can u go by one random night?

greatunclebill · Post by **greatunclebill** » Mon Apr 20, 2015 12:44 pm

if you have apnea or restless leg syndrome it will show up in the testing. if the sleep doc says you don't have them, you don't. if your primary doctor don't know what to check next, i'd suggest finding a new doc.

robysue · Post by **robysue** » Mon Apr 20, 2015 1:43 pm

Enchanter wrote:My doctor's appointment is in 2 days. The thing is I'm so used to all my tests showing up normal. Last time tested cholesterol, Fasting glucose, thyroid, blood pressure, calcium levels, testosterone, DHEA, lipids, etc..

So you know your daytime symptoms are not the cause of some of the usual culprits. That's actually useful knowledge to have.

However, the thing that affects me and fatigues me starts with a bad nights sleep. I wake up and never fully recover. Getting to sleep at an appropriate hour is hard enough as is. But even when I do, I don't get a restful nights sleep. I wake up and have a major hangover feeling and even when I don't feel as bad, I know that I've never truly recovered. I haven't woke up feeling overly fresh in many many years.

In an average week, how many days do you wake up feeling like you have a major hangover? If it's six or seven, then there's a high probability that your night in the sleep lab will be just as awful as your sleep normally is.

Getting to sleep at an appropriate hour is hard enough as is. But even when I do, I don't get a restful nights sleep. ...
But I don't nap, because napping would mean I could fall asleep at will, which is not a possibility.

Some relevant questions:

1) What does your typical sleep schedule look like? On a typical night, when do you go to bed? How long does it take to fall asleep? When do you wake up for good the next morning? How many times do you think you wake up during the night?

2) Why is "getting to sleep at an appropriate hour" hard? Do you lie in bed unable to fall asleep for a very long time? Do you simply stay awake long after you want to be in bed because you're doing things? If so, what kinds of things are you doing?

3) In your opinion, what is an "appropriate hour" for getting to sleep? And when do you think you should be getting up in the morning? In other words, what would your desired sleep schedule look if you were sleeping as well as you would like to sleep?

4) You say you don't nap because "napping would mean [you] could fall asleep at will, which is not a possibility." Does this mean that you would like to take naps because you're sleepy, but when you lie down for one, you can't get to sleep? Or does this mean you don't get sleepy during the daytime. NOTE: Feeling sleepy is NOT the same as feeling fatigued.

5) In addition to waking up feeling unrefreshed and unrested, what would you say your daytime symptoms are? Are you excessively sleepy during the daytime (in spite of your inability to nap)? Or are you excessively fatigued or physically exhausted? It's important to distinguish between the two problems. When you say you feel hung over, does that mean you have a headache that lasts for much of the day? Or do you mean that you're dealing with a lot of brain fog issues? Or both?

It's important to document your daytime symptoms in language that helps you, your doctor, and us help you figure out what's really going on with your sleep: There are other sleep disorders besides plain old obstructive sleep apnea (OSA). And any one of them can cause the same "exhausted all day" and "wake up feeling unrested" feelings that are common among people with OSA. And if your bad sleep is caused by something other than or in addition to OSA, then you'll need to tackle all the root causes of the bad sleep before you'll start feeling better.

The data gathered in an in-lab sleep test is extensive. And it can be used to diagnose a number of sleep disorders as well as OSA.

So with this problem continuing to persists... If I'm not getting a good nights sleep but the tests show I'm getting a good night's sleep on paper, then where would I go from there? I'm ALWAYS preparing for the next step. But I'm going to take this step and get the tests done. It's just that I'm so very used to being confused and not knowing what my problem is.

and

Enchanter wrote:
BlackSpinner wrote:There are many things being tested and you can request a copy.
It is not always about AHI there are other issues.
Sure, but the issue is that isn't every night different? What if the numbers vary? How can u go by one random night?

Here's the thing about OSA: Yes, it can vary from night to night, BUT it doesn't vary that much. Meaning: If you have moderate or severe OSA, it's going to show up on the sleep test if you get as little as 2 hours of highly fractured sleep. If you have mild-to-moderate OSA where your untreated AHI is typically between 10 and 15, the OSA is going to show up on the sleep test if you get as little as 2 hours of highly fractured sleep. But if you have very mild OSA (an untreated AHI a bit above 5), then yes, it's possible that on a very good night your AHI might be below 5.

If you have OSA that is strongly positional, then you need to make sure that you sleep in your worst position (usually on your back) for a significant chunk of the test. If you happen to have OSA that is strongly correlated to REM sleep, it should show up as soon as you hit REM. But note: If REM-related OSA is bad enough, that can keep you from getting into and staying in REM for very long. But an overall lack of REM sleep combined with events that start happening as soon as you hit REM typically lead to some pretty high REM AHI numbers in spite of very few minutes in spent in REM. If you sleep halfway decently (in terms of time asleep), but don't hit REM at all, that's going to be noticed and it can point to the need to do some further investigation if the overall AHI is too low for an OSA diagnosis.

It's also important to realize that if the sleep test turns up negative for OSA, it may still turn up other very useful information, including a diagnosis of some other sleep disorder. Other than the various forms of sleep disordered breathing (OSA, central sleep apnea, upper airway resistance syndrome, and snoring), an in-lab sleep test might also result in a diagnosis of periodic limb movement disorder (PLMD), restless leg syndrome (RLS), and a host of other potential sleep disorders. And if the sleep is just plain fragmented with a lot of spontaneous arousals and there's no evidence of anything else wrong with the sleep, then a diagnosis of primary insomnia is likely to be made.

In conclusion, you don't need to start planning on what to do if the test is negative for OSA. Plan right now on requesting getting the full summary report for your sleep test including all the summary data and summary graphs regardless of whether the test is positive, negative, or borderline. If the test winds up being negative for OSA, PLMD, etc, then you will need to start thinking about whether your problem is plain old chronic insomnia of some sort or potentially some kind of a circadian rhythm problem. And note: Really fixing chronic insomnia and/or circadian rhythm problems can involve a lot of hard work, but if they can be brought under control, the quality of the sleep can improve quite significantly.

Enchanter · Post by **Enchanter** » Mon Apr 20, 2015 3:01 pm

robysue wrote:
Enchanter wrote:
Some relevant questions:

1) What does your typical sleep schedule look like? On a typical night, when do you go to bed? How long does it take to fall asleep? When do you wake up for good the next morning? How many times do you think you wake up during the night?

It differs but typically I'll go to bed around midnight and fall asleep around 4- 5 am. I can't remember the last time I fell asleep within 15 minutes of lying down. I wake up usually around noon. I feel really bad.

2) Why is "getting to sleep at an appropriate hour" hard? Do you lie in bed unable to fall asleep for a very long time? Do you simply stay awake long after you want to be in bed because you're doing things? If so, what kinds of things are you doing?

I don't know. I used to take Seroquel, but that was 7 years ago. I was on that for a long time. It used to make me sleep right away and make me really tired in the morning. I don't have that drug anymore and will never go back on it again because it was so hard to get off of and I don't want to depend on it. You can get suicidal when you get off of it. I don't have the Seroquel and as a result, my brain doesn't have that pill to make me fall asleep right away. Things like Camomille tea and tryptophan helped at one point, but believe me when I say they wear off after about 2 weeks and are no longer effective unless I take more and more. So all I take now is some melatonin, which helps a little more. But at times, that can also be ineffective.

3) In your opinion, what is an "appropriate hour" for getting to sleep? And when do you think you should be getting up in the morning? In other words, what would your desired sleep schedule look if you were sleeping as well as you would like to sleep?

I'd say around midnight or earlier and up before 8 am is ideal. That's something I'd like to be able to do.

4) You say you don't nap because "napping would mean [you] could fall asleep at will, which is not a possibility." Does this mean that you would like to take naps because you're sleepy, but when you lie down for one, you can't get to sleep? Or does this mean you don't get sleepy during the daytime. NOTE: Feeling sleepy is NOT the same as feeling fatigued.

What I meant by that is I can't. One example is a time my friend and I were on a mini trip and he said if I'm tired to just take a nap while in the passenger seat. I tried to explain to him I can't. Once I'm up, I'm up. So I don't think I'm sleepy in the daytime, but I feel fatigued and unrefreshed and didn't get a good night sleep the night before. And I usually do sleep more than 7 hours, it doesn't make a difference. There actually have been nights where I went to bed around 10, got about 8 hours, and didn't feel any better. Same symptoms continue.

5) In addition to waking up feeling unrefreshed and unrested, what would you say your daytime symptoms are? Are you excessively sleepy during the daytime (in spite of your inability to nap)? Or are you excessively fatigued or physically exhausted? It's important to distinguish between the two problems. When you say you feel hung over, does that mean you have a headache that lasts for much of the day? Or do you mean that you're dealing with a lot of brain fog issues? Or both?

I can explain my symptoms but you have to think about what I'm saying and I mean what I say, not something similar. As soon as I wake up, I feel as if my brain is not refreshed from sleeping. I feel as if my brain didn't receive proper oxygen and is dying for oxygen to give the rest of my body. Now keep in mind I did have a blood test done before and the test showed I am getting a good amount of blood. But I feel as if my brain doesn't get any oxygen from sleep when I wake up. It's chronic. Now to be honest, when I sleep on my side I feel a LITTLE bit better. But still bad and not good enough. I'm still not refreshed. That's what I mean I say I have a hangover. Like when you eat icecream fast and you get a brain freeze. Imagine I'm getting an oxygen freeze at night and in the morning I feel it very strongly? I do feel it, so something is going on. I'm not going to be in denial anymore, I was in denial for years because people told me I'm fine. I'm not. I know I'm not. It's just that this has been going on for so long, that it's become the norm. But it's not normal. Especially when my family has no idea what I mean when I say I have a ''problem.'' They simply say oh yea I guess nobody's perfect, you just deal with it.

Now there are other symptoms which are related to this. I've always always loved lifting weights. But over the last several years, my muscles cannot get a great pump from lifting a wimp. Now why is that? Well because my brain feels choked of either oxygen or blood when I'm doing a bench press. And so after a few repetitions, my brain starts to feel like it's going to pass out from a lack of oxygen, even though my body can still lift the weight. So that's why I don't get a pump, because my brain won't do what my body wants it to do. It's as if my windpipe is choked of air and won't deliver oxygen to my brain to complete the lift. So therefore, I shy away from the weights now. I still exercise of course, but the weight lifting thing is too painful, especially overhead lifts or bench presses.

And it's pretty related to the sleep thing. Because I have that hung over feeling ''no oxygen'' when I wake up and when I do the lifts. So all of these things have to be related. I kind of can feel it intuitively. See my old doctor ignored my symptoms and got aggravated because I kept on coming in. This was years ago, but At the time he said I looked like I was in pretty good shape and if anything only had like 5-10 pounds I could lose. I kept asking him does all this mean is I'm out of shape and that's why I can't lift the weight? He simply was stumped and he offered to set me up with a trainer that could teach me how to lift weights. And that's very frustrating because he simply doesn't understand that something is wrong.

I've also been to an alternative doctor in Berkeley who was very much into vitamins and getting people off of drugs. We had several tests done, all the usuals. All my numbers looked great and he said he was stumped. Everyone else was sitting there at his table with all kinds of bad tests results. Mine were all good. He measured hormones and testosterone, blood levels, sugar levels, vitamin levels, mineral levels. He just didn't understand how all my numbers could be in the normal range.

Now I exercise a lot. I got my cholesterol from 250 to 160 without any medication. Years ago, the cardiologist told me I was lazy. I got so pissed off at him, I slammed the door on him, threw my meds away, and just started working out like crazy with cardio and taking omega 3's and eating lots of fiber. I got my cholesterol down to a 160 and all my lipid levels were good. I do a lot of bike riding and stair master workouts. Sure I feel these symptoms while I'm out doing my cardio, but I FORCE myself to get with my program because I'm desperate to feel better. And I will continue to do healthy things. But what in the world is going on with me?? Will the doctor be able to help me? I'm so nervous. I try soooo hard.

M'ohms · Post by **M'ohms** » Mon Apr 20, 2015 4:46 pm

This may seem crazy to you--it does to me--but I had the same mental strangle as you describe while exercising.

Having recently been put on supplemental oxygen at night, I was curious about my heart somehow causing the problem. I scheduled my first visit with a cardiologist. Normal exam, BP good, as always. Did a stress test which resulted in a Dx of Exercise Induced Hypertension. Baffling!

I mention this because you said that you exercise and have had to cut out a portion of it. Have you had a stress test done?

Enchanter · Post by **Enchanter** » Mon Apr 20, 2015 5:05 pm

M'ohms wrote:This may seem crazy to you--it does to me--but I had the same mental strangle as you describe while exercising.

Having recently been put on supplemental oxygen at night, I was curious about my heart somehow causing the problem. I scheduled my first visit with a cardiologist. Normal exam, BP good, as always. Did a stress test which resulted in a Dx of Exercise Induced Hypertension. Baffling!

I mention this because you said that you exercise and have had to cut out a portion of it. Have you had a stress test done?

Hello there. I'm not sure what a stress test is. Do you have the same strangle while trying to lift a weight? Like your brain can't produce the oxygen to get your body to do what you want it to?

Keep in mind when I say that I can't lift the weight, it's not my heart giving out, it's simply my brain still feeling that hung over feeling and not being able to circulate the energy to my muscles. It's very hard to explain. It's not the same thing as just watching Kevin James struggle to do a push up because he's too out of shape. I can actually do 50 push ups in a row. But with the weights, my brain gives out.

EDIT: Yes I researched stress test. I did have a stress test done while I was walking on a treadmill years ago. I was much heavier then, than I am now. And even then the doctor who did the test said I passed with flying colors.

Also, when I have tests where I have to blow, the doctors always say I have strong lungs.

M'ohms · Post by **M'ohms** » Mon Apr 20, 2015 6:14 pm

Yes, the sensation feels like brain vacancy. I only looked at my heart as a possible reason for low desats and low heart rate during the night. I was suspicious of blood oxygen problems at the end of last year because my fingernails were blue. I got a pulse-oximeter and started checking. Sure enough, my desats were in the 50's and heart rate fell into the 30's. supplemental oxygen has been a game-changer for me.

I'm glad cardio checked out for you. It was the only idea I had since your other tests checked out.

Enchanter · Post by **Enchanter** » Mon Apr 20, 2015 6:45 pm

M'ohms wrote:Yes, the sensation feels like brain vacancy. I only looked at my heart as a possible reason for low desats and low heart rate during the night. I was suspicious of blood oxygen problems at the end of last year because my fingernails were blue. I got a pulse-oximeter and started checking. Sure enough, my desats were in the 50's and heart rate fell into the 30's. supplemental oxygen has been a game-changer for me.

I'm glad cardio checked out for you. It was the only idea I had since your other tests checked out.

Do you know exactly what my feeling is? Do we feel something similar but not the same and coming from 2 different things? I guess I do feel brain vacancy. Or the sense that oxygen is being choked by my neck from the brain and body.

Or... It could be my brain isn't getting the proper oxygen. Something is wrong.

robysue · Post by **robysue** » Tue Apr 21, 2015 12:02 am

Enchanter wrote:
robysue wrote: Some relevant questions:

1) What does your typical sleep schedule look like? On a typical night, when do you go to bed? How long does it take to fall asleep? When do you wake up for good the next morning? How many times do you think you wake up during the night?

It differs but typically I'll go to bed around midnight and fall asleep around 4- 5 am. I can't remember the last time I fell asleep within 15 minutes of lying down. I wake up usually around noon. I feel really bad.

What do you do when you go to bed around midnight, but find that you simply cannot fall asleep? Do you lie in bed getting more and more anxious or worried about the lack of sleep until you finally drift off around 4 or 5 am? Do you repeatedly look at the clock every few minutes and start calculating how little you've slept and how little time there is before morning? Do you get back out of bed and do something to keep your mind off the fact that you are not sleeping?

Enchanter wrote:
robysue wrote:2) Why is "getting to sleep at an appropriate hour" hard? Do you lie in bed unable to fall asleep for a very long time? Do you simply stay awake long after you want to be in bed because you're doing things? If so, what kinds of things are you doing?

I don't know. I used to take Seroquel, but that was 7 years ago. I was on that for a long time. It used to make me sleep right away and make me really tired in the morning. I don't have that drug anymore and will never go back on it again because it was so hard to get off of and I don't want to depend on it. You can get suicidal when you get off of it. I don't have the Seroquel and as a result, my brain doesn't have that pill to make me fall asleep right away. Things like Camomille tea and tryptophan helped at one point, but believe me when I say they wear off after about 2 weeks and are no longer effective unless I take more and more. So all I take now is some melatonin, which helps a little more. But at times, that can also be ineffective.

Let's take the Seroquel, the trypotphan, and the Camomille tea out of the discussion for a minute since you no longer use those things.

How much melatonin are you taking each night? And what time do you take it? And when do you go to bed?

Do you know what the phrase sleep hygiene means? If you know what I mean by that phrase, what does your sleep hygiene look like right now? Have you ever tried to tackle some of your sleep problems by considering the behavior patterns you have that may be making it more difficult to both get to sleep and stay asleep?

Enchanter wrote:
robysue wrote:3) In your opinion, what is an "appropriate hour" for getting to sleep? And when do you think you should be getting up in the morning? In other words, what would your desired sleep schedule look if you were sleeping as well as you would like to sleep?
I'd say around midnight or earlier and up before 8 am is ideal. That's something I'd like to be able to do.

So you would like to be sleeping between midnight and 8:00am.

But in other parts of your answers to my questions you've said that you are more likely to actually fall asleep around 4 or 5 am and then sleep until about noon. That's an eight hour "sleep window", but your current 4-noon sleep window is four hours out of phase with your desired sleep window. That points to a potential Delayed Sleep Phase (DSP) problem. It's quite possible to have both DSP and OSA. But here's the thing you need to be aware of: If you have both DSP and OSA, you'll need to solve both problems before you will be able to sleep soundly during your desired time in bed window. If you have OSA, the CPAP will help you sleep better---in terms of eliminating the apneas. But the CPAP will NOT fix the DSP problem. In other words, it's possible that if you are diagnosed with OSA and then start sleeping with a CPAP, you might still not be able to easily and quickly fall asleep around midnight. And sleeping between 4AM and noon may still leave you feeling crappy simply because those are NOT the hours you want to be asleep. There is no quick fix for DSP problems, but there are a lot of things (most of which require some hard work) that can be done to manage a DSP problem.

Also---since you regularly lie in bed between midnight and 4 AM without falling asleep, then you need to discuss this particular symptom with your doctor. In-lab sleep tests are typically run with a lights out time of around 11:00pm (or midnight at the latest) and a wake up time of around 5:30-6:00. If there is a very high chance that you will not be able to get to sleep until after 4:00AM, you may very well want to ask about having one Ambien tablet prescribed for you to take on the night of the sleep study. (If you've taken Ambien in the past and it didn't work, then a script for one tablet of some other prescription sleeping medication may be in order.)

Enchanter wrote:
robysue wrote:4) You say you don't nap because "napping would mean [you] could fall asleep at will, which is not a possibility." Does this mean that you would like to take naps because you're sleepy, but when you lie down for one, you can't get to sleep? Or does this mean you don't get sleepy during the daytime. NOTE: Feeling sleepy is NOT the same as feeling fatigued.

What I meant by that is I can't. One example is a time my friend and I were on a mini trip and he said if I'm tired to just take a nap while in the passenger seat. I tried to explain to him I can't. Once I'm up, I'm up. So I don't think I'm sleepy in the daytime, but I feel fatigued and unrefreshed and didn't get a good night sleep the night before. And I usually do sleep more than 7 hours, it doesn't make a difference. There actually have been nights where I went to bed around 10, got about 8 hours, and didn't feel any better. Same symptoms continue.

So strictly speaking, excessive daytime sleepiness is NOT one of your symptoms. But excessive tiredness/fatigue is a major symptom. And waking up fatigued and unrefreshed is a major symptom. It's important to get this language correct when you are speaking to the doctor: Fatigue and sleepiness are two different symptoms. Likewise, waking up unrefreshed and excessive daytime sleepiness are two different symptoms.

Enchanter wrote:
robysue wrote:5) In addition to waking up feeling unrefreshed and unrested, what would you say your daytime symptoms are? Are you excessively sleepy during the daytime (in spite of your inability to nap)? Or are you excessively fatigued or physically exhausted? It's important to distinguish between the two problems. When you say you feel hung over, does that mean you have a headache that lasts for much of the day? Or do you mean that you're dealing with a lot of brain fog issues? Or both?

I can explain my symptoms but you have to think about what I'm saying and I mean what I say, not something similar. As soon as I wake up, I feel as if my brain is not refreshed from sleeping. I feel as if my brain didn't receive proper oxygen and is dying for oxygen to give the rest of my body. Now keep in mind I did have a blood test done before and the test showed I am getting a good amount of blood. But I feel as if my brain doesn't get any oxygen from sleep when I wake up. It's chronic. Now to be honest, when I sleep on my side I feel a LITTLE bit better. But still bad and not good enough. I'm still not refreshed. That's what I mean I say I have a hangover.

Again, when you are describing the symptoms to the doc, you need to use language that the doc interprets correctly. What you are describing is best called waking up unrested and unrefreshed and feeling fatigued and exhausted during the daytime. And these problems are chronic because they are present almost every single day. And it's important to tell the doctor that you wake up unrested and unrefreshed even when you get a full 8 hours of sleep. And that you wake up unrested and unrefreshed even when you get to sleep at a decent hour.

And what's the best way to to describe the "I feel as if my brain didn't receive proper oxygen and is dying for oxygen to give the rest of my body" feelings to the doc? Well, you could try this phrase itself. But, as you indicate, you've already had a test that indicates your blood flow is just fine. So let's see if we can tease apart what you mean by this statement in language that will make sense to the doctor.

Does your head hurt when you first get up? Lack of oxygen at night triggers sleep apnea headaches in many untreated OSA sufferers. The headache is often a dull throbbing headache that is frequently centered behind the eyeballs. The headache usually gets better as the day wears on and you get brain reoxygenated by waking up.

Do you wake up with a start feeling as though you're out of breath? or choking? Both are pretty common complaints in untreated OSA sufferers.

Do you wake up with your brain in a fog? Is it extremely hard to focus on anything when you just wake up because of the brain fog? Again, this is a pretty common complaint in undiagosed OSA sufferers.

Personally, I would not use the word "hangover" when describing your symptoms to the doc. "Hangover" is usually used to describe the experience of various unpleasant physiological and psychological effects following consumption of alcohol or other drugs the night before. It can (and often is) used to describe the way you feel if some kind of prescribed medication (including sleeping pills) leaves you feeling in the morning when the medication adversely affects your sleep OR if it makes you excessively drowsy the next morning.

Enchanter wrote:Now there are other symptoms which are related to this. I've always always loved lifting weights. But over the last several years, my muscles cannot get a great pump from lifting a wimp. Now why is that? Well because my brain feels choked of either oxygen or blood when I'm doing a bench press. And so after a few repetitions, my brain starts to feel like it's going to pass out from a lack of oxygen, even though my body can still lift the weight. So that's why I don't get a pump, because my brain won't do what my body wants it to do. It's as if my windpipe is choked of air and won't deliver oxygen to my brain to complete the lift.

We need to tease this apart as well.

When you say that you feel like you are going to pass out, do you mean you feel faint? Or are you dizzy as well as faint? And does this happen even if you are well hydrated? And does it happen when you are lifting relatively small amounts of weights? Or does it only happen when you are lifting at or near the most you can reasonably lift?

You need to describe this sensation to the doctor in factual language without speculating about the cause. To describe what's going on, I would suggest telling the doc something along these lines: I love lifting weights, but I find it difficult to do now. When I try to lift weights, after a few repetitions, I feel like I'm going to pass out. If you get dizzy or woozy, mention that as well.

And when you say that your "windpipe is choked of air and won't deliver oxygen to [your] brain", do you mean that you are short of breath? Are you wheezing when this happens? Does it become difficult to take a nice deep breath when this happens?

Enchanter wrote:And it's pretty related to the sleep thing. Because I have that hung over feeling ''no oxygen'' when I wake up and when I do the lifts. So all of these things have to be related. I kind of can feel it intuitively.

Here's the thing: Sleep disordered breathing, including OSA, affects your breathing only when you are asleep. If you are having breathing problems during the daytime as well as at night, then the daytime breathing problems are likely caused by some condition other than a sleep disorder. It's possible to have OSA and asthma for instance. And the fatigue and bad sleep caused by the OSA can aggravate the asthma. And exercise can aggravate asthma. Have you ever had a spirometry test done to investigate whether you might have asthma or some other daytime breathing problem?

So if you are having daytime problems with breathing---as in you are feeling like your "windpipe is choked of air and won't deliver oxygen to [your] brain", then you also need to describe the daytime breathing problems as an additional problem and you need to use language that makes sense to your doctor. I'd suggest using factual language to describe any daytime breathing problems you have. Something like, "I often feel short of breath when I'm trying to lift weights. And when I feel short of breath, I also feel woozy and like I may pass out."

Enchanter wrote:I've also been to an alternative doctor in Berkeley who was very much into vitamins and getting people off of drugs. We had several tests done, all the usuals. All my numbers looked great and he said he was stumped. Everyone else was sitting there at his table with all kinds of bad tests results. Mine were all good. He measured hormones and testosterone, blood levels, sugar levels, vitamin levels, mineral levels. He just didn't understand how all my numbers could be in the normal range.

Did alternative doctor ask you about your sleep issues? Did you mention how subjectively rotten your sleep is on a daily basis? Did you mention that you feel short of breath and fain when you try to exercise?

You see, bad sleep, even bad sleep caused by untreated OSA, isn't necessarily going to affect any of those hormone tests, the blood tests, the sugar levels, the vitamin levels or the mineral levels. But it is going to make you feel miserable. Likewise, a daytime breathing problem might not affect any of those tests either. But an untreated daytime breathing problem is going to make you feel miserable.

Enchanter wrote:Now I exercise a lot. I got my cholesterol from 250 to 160 without any medication. Years ago, the cardiologist told me I was lazy. I got so pissed off at him, I slammed the door on him, threw my meds away, and just started working out like crazy with cardio and taking omega 3's and eating lots of fiber. I got my cholesterol down to a 160 and all my lipid levels were good. I do a lot of bike riding and stair master workouts. Sure I feel these symptoms while I'm out doing my cardio, but I FORCE myself to get with my program because I'm desperate to feel better. And I will continue to do healthy things.

Again, if you are experiencing breathing problems while exercising, you need to describe the problem as precisely that. Tell the doc: When I ride my bike or work on on the stair master, I feel like I might faint or pass out. And I feel like I can't breathe properly when I'm exercising.

Enchanter wrote:But what in the world is going on with me?? Will the doctor be able to help me? I'm so nervous. I try soooo hard.

I am NOT a doctor. But to my layman's mind it sounds like you have at least a couple of different health problems going on.

1) There's clearly something wrong with your sleep. Hence the need for a full in-lab sleep test. It might be OSA. Or it might be some other sleep disorder. Or it might be DSP. Or it might be plain old chronic insomnia. Or, most likely, its some kind of a combination of more than one sleep problem. But until the sleep problems are diagnosed and properly treated, you are not likely to get much better. Depending on what the sleep test reveals, you may need a referral to a sleep doc to really get a handle on fixing the sleep problems.

2) It sounds like you also have some kind of a daytime breathing problem. It may be something that mainly manifests itself when you are actively exercising. Or it may be that that's when it is most notable. If you are feeling like you're choking during the daytime, then it's worth asking the doc whether you might have some kind of asthma-type problem. It might be worth asking for a referral for a spirometry test just to find out whether you have some kind of lung problem that is affecting your breathing.

Enchanter · Post by **Enchanter** » Tue Apr 21, 2015 2:13 am

robysue wrote:
Enchanter wrote:
robysue wrote: Some relevant questions:

1)
What do you do when you go to bed around midnight, but find that you simply cannot fall asleep? Do you lie in bed getting more and more anxious or worried about the lack of sleep until you finally drift off around 4 or 5 am? Do you repeatedly look at the clock every few minutes and start calculating how little you've slept and how little time there is before morning? Do you get back out of bed and do something to keep your mind off the fact that you are not sleeping?

I do different things and try different things. Sometimes I just lay there and try to relax and go to sleep. It doesn't work. Other times I'll watch some tv and I actually get better results when I watch tv. In fact leaving the tv on, helps me a little bit. I don't really look at the clock repeatedly, but I might check it once a lot of time has passed. Reading books usually doesn't help much. The internet is probably the worst thing because it's the most addictive. I'd say watching tv helps more than anything.

Let's take the Seroquel, the trypotphan, and the Camomille tea out of the discussion for a minute since you no longer use those things.

How much melatonin are you taking each night? And what time do you take it? And when do you go to bed?

The bottle says to take 1 pill. I usually cut it in half and take half of it, other times I'll take the 2nd half later if I need to. Other times I've taken the whole pill but then feel too tired the next day even though it works somewhat decently.

Do you know what the phrase sleep hygiene means? If you know what I mean by that phrase, what does your sleep hygiene look like right now? Have you ever tried to tackle some of your sleep problems by considering the behavior patterns you have that may be making it more difficult to both get to sleep and stay asleep?

Sure, as I mentioned the computer isn't a good way to fall asleep. So I try to get everything done on the computer before it's late. I always keep my room free of clutter. I always make my bed after I wake up. Sometimes I'll try the white noise machine, but that usually only works after many hours and I'm really tired. Obviously it's not good to have caffeine and sugar before bed, so I eliminate those things.

But in other parts of your answers to my questions you've said that you are more likely to actually fall asleep around 4 or 5 am and then sleep until about noon. That's an eight hour "sleep window", but your current 4-noon sleep window is four hours out of phase with your desired sleep window. That points to a potential Delayed Sleep Phase (DSP) problem. It's quite possible to have both DSP and OSA. But here's the thing you need to be aware of: If you have both DSP and OSA, you'll need to solve both problems before you will be able to sleep soundly during your desired time in bed window. If you have OSA, the CPAP will help you sleep better---in terms of eliminating the apneas. But the CPAP will NOT fix the DSP problem. In other words, it's possible that if you are diagnosed with OSA and then start sleeping with a CPAP, you might still not be able to easily and quickly fall asleep around midnight. And sleeping between 4AM and noon may still leave you feeling crappy simply because those are NOT the hours you want to be asleep. There is no quick fix for DSP problems, but there are a lot of things (most of which require some hard work) that can be done to manage a DSP problem.

Also---since you regularly lie in bed between midnight and 4 AM without falling asleep, then you need to discuss this particular symptom with your doctor. In-lab sleep tests are typically run with a lights out time of around 11:00pm (or midnight at the latest) and a wake up time of around 5:30-6:00. If there is a very high chance that you will not be able to get to sleep until after 4:00AM, you may very well want to ask about having one Ambien tablet prescribed for you to take on the night of the sleep study. (If you've taken Ambien in the past and it didn't work, then a script for one tablet of some other prescription sleeping medication may be in order.)

So strictly speaking, excessive daytime sleepiness is NOT one of your symptoms. But excessive tiredness/fatigue is a major symptom. And waking up fatigued and unrefreshed is a major symptom. It's important to get this language correct when you are speaking to the doctor: Fatigue and sleepiness are two different symptoms. Likewise, waking up unrefreshed and excessive daytime sleepiness are two different symptoms.

I would say when I wake up, I'm still sleepy for about 15 minutes or so. And I try to get some more sleep. Sometimes it does work, usually not. Sometimes I am able to go back to sleep for just a lil bit longer. But right, once I'm up and about, I'm not sleepy or worried about falling asleep. I may yawn sometimes, but I'm not sleepy. However, my brain doesn't feel too good, I don't feel too rested and it lingers on. And it's definitely from a lack of good, quality sleep. And it's chronic.

Again, when you are describing the symptoms to the doc, you need to use language that the doc interprets correctly. What you are describing is best called waking up unrested and unrefreshed and feeling fatigued and exhausted during the daytime. And these problems are chronic because they are present almost every single day. And it's important to tell the doctor that you wake up unrested and unrefreshed even when you get a full 8 hours of sleep. And that you wake up unrested and unrefreshed even when you get to sleep at a decent hour.

And what's the best way to to describe the "I feel as if my brain didn't receive proper oxygen and is dying for oxygen to give the rest of my body" feelings to the doc? Well, you could try this phrase itself. But, as you indicate, you've already had a test that indicates your blood flow is just fine. So let's see if we can tease apart what you mean by this statement in language that will make sense to the doctor.

Well that test showed I didn't have anema. But it's my brain that feels it's not getting the blood or oxygen. Have you ever taken a deep sedative and been affected by it the next day? That's sort of how it is for me, but instead of feeling sleepy, I guess I feel fatigued from it. I hope that I'm explaining it right because every time I try to explain it a certain way, it's very easy for the interpreter to attach it to something else.

Does your head hurt when you first get up? Lack of oxygen at night triggers sleep apnea headaches in many untreated OSA sufferers. The headache is often a dull throbbing headache that is frequently centered behind the eyeballs. The headache usually gets better as the day wears on and you get brain reoxygenated by waking up.

Well when I get up, I feel like I took a drug that made me hungover and my brain is ''recovering.'' That's the best way I can describe it, a struggle trying to recover. I guess it's not a ''headache'' per say, but it's something else that I can't describe. I don't know the words. My brain is trying to recover. I feel as if it didn't heal itself from sleeping. Does that make sense? I really don't know how else to put it, but I wish that you could be in my body for a second and you might be able to explain what it is. My brain feels weak when I wake up. I feel as if it tries to recover and get either blood circulation or oxygen. It's not getting something. And my brain is not refreshed. So it's not a headache, but it is a sensation I feel in my brain. I think.

Do you wake up with a start feeling as though you're out of breath? or choking? Both are pretty common complaints in untreated OSA sufferers.

No, not really. This is what I'm afraid of. Each time I describe something, it can sound like something else. I don't really feel like I'm out of breath when I wake up. There was a time when I was though and literally was choking. But most nights, that's not the case. I feel as if my brain has had oxygen sucked out of it overnight. I can't prove it, but that's how I feel. And I tell myself that I feel just awful.

Do you wake up with your brain in a fog? Is it extremely hard to focus on anything when you just wake up because of the brain fog? Again, this is a pretty common complaint in undiagosed OSA sufferers.

I'm not sure what fog is. But I will say that every time I wake up, I forget what is going on in my life for the first 15 seconds or so and then it comes to me and I actually am surprised as far as what my realities are and what my life's about. It's as if I thought the dreams were my real life for a few seconds. That never used to happen. I don't know if this is from the sleep thing though, but it is really weird to me.

Personally, I would not use the word "hangover" when describing your symptoms to the doc. "Hangover" is usually used to describe the experience of various unpleasant physiological and psychological effects following consumption of alcohol or other drugs the night before. It can (and often is) used to describe the way you feel if some kind of prescribed medication (including sleeping pills) leaves you feeling in the morning when the medication adversely affects your sleep OR if it makes you excessively drowsy the next morning.

I understand, but it may be the closest thing I can think of. It does feel like a bad hangover. I don't drink though, but I'd say it's kind of like a real bad hangover if I had to guess. Like I said, I feel like I'm recovering. What happens when you have a bad hangover? You feel messed up and are trying to recover. So it's not a hangover, but there is a sensation when I feel like my brain just had oxygen sucked out of it overnight.

When you say that you feel like you are going to pass out, do you mean you feel faint? Or are you dizzy as well as faint? And does this happen even if you are well hydrated? And does it happen when you are lifting relatively small amounts of weights? Or does it only happen when you are lifting at or near the most you can reasonably lift?

Okay, this is actually very hard to explain. I don't really feel like I'm literally going to pass out, again maybe bad choice in words. I guess what I probably meant was that I might as well pass out. I stay hydrated though, my urine is clear most of the time. Usually I get this sensation when I'm doing an overhead lift or a bench press. I can actually do 40-50 push ups really fast and I don't feel like I'm passing out. When I do a bench press and use a relatively heavy weight (8-12 rep range) my brain gets really weird. It's so hard to explain... but it's chronic and I believe it is related to the sleep issue. Because remember how I said I feel like I'm recovering when I wake up? Well when I lift a somewhat heavier weight with the bench press or shoulder press, after about 5 or 6 reps, I start to feel as if my brain is no longer sending blood and nutrients to my muscles. And so I let up, even though I feel like I could get the last few repetitions. It actually happened overnight about 10 years ago after spraining an ankle playing basketball. I have no idea how that has anything to do with it, but after that is when it all happened.

It's as if I cannot get a pump when doing weights. I remember after flexing, my biceps or my forearms would cramp. This doesn't happen as much now though. But it's as if my muscles don't have the proper bloodflow to contract. And when doing slightly heavier lifts with the bench press or shoulder press, my brain doesn't send oxygen or blood down my body and I feel I can't get it going. There is a blockage. A blockage of either oxygen, blood, or energy. I used to think it was chi. So my brain won't allow me to push myself. My head will actually feel like turning to the side while I'm lying on the bench. Does that make sense? It's very scary for me and frustrating because it's mysterious and I'd do anything to pinpoint what this crazy problem was. I do think it has to do with the sleep problem though because it has to do with my brain recovering and feeling like it got sucked from oxygen or blood.

You need to describe this sensation to the doctor in factual language without speculating about the cause. To describe what's going on, I would suggest telling the doc something along these lines: I love lifting weights, but I find it difficult to do now. When I try to lift weights, after a few repetitions, I feel like I'm going to pass out. If you get dizzy or woozy, mention that as well.

I wouldn't say I get dizzy, but I feel like my brain is still recovering which is causing me to feel fatigued.

And when you say that your "windpipe is choked of air and won't deliver oxygen to [your] brain", do you mean that you are short of breath? Are you wheezing when this happens? Does it become difficult to take a nice deep breath when this happens?

That is the thing. I described something that sounded like something else. No it's not really wheezing or asthma. It's not something as simple as that. When I say I think my windpipe is chocked of air, I think that my brain is struggling to delivery oxygen from my windpipe down to my body and maybe the windpipe is preventing the ''flow.'' So imagine a blockage. Oxygen or circulation if you will, is not penetrating. And it feels kind of like the windpipe is the blockage. I'm not wheezing. But I feel like I can't force my brain to grunt into the lifts, though my windpipes. Because it's still recovering and not ready to send oxygen down my windpipes and into my body, therefore my muscles don't get a good contraction. It's really really really complicated. When i do push ups, I don't really get the same sensation. Push ups feel a little more like cardio as opposed to lifting a challenging weight and trying to push hard. My brain won't allow me to push hard at times when lifting a weight.

So if you are having daytime problems with breathing---as in you are feeling like your "windpipe is choked of air and won't deliver oxygen to [your] brain", then you also need to describe the daytime breathing problems as an additional problem and you need to use language that makes sense to your doctor. I'd suggest using factual language to describe any daytime breathing problems you have. Something like, "I often feel short of breath when I'm trying to lift weights. And when I feel short of breath, I also feel woozy and like I may pass out."

Well it's not so much that I feel a shortness of breathe, but it's more like my brain hasn't recovered and so it won't allow me to exert myself more. It won't allow me to push and grunt into a challenging weight. Something is just not there in the brain. And at times I'd sit on the bench and try to turn my head to the side.

2) It sounds like you also have some kind of a daytime breathing problem. It may be something that mainly manifests itself when you are actively exercising. Or it may be that that's when it is most notable. If you are feeling like you're choking during the daytime, then it's worth asking the doc whether you might have some kind of asthma-type problem. It might be worth asking for a referral for a spirometry test just to find out whether you have some kind of lung problem that is affecting your breathing.

Well I have had tests where I'm forced to breath into an inhaler. I think it's an inhaler. I have a very strong lung capacity. Keep in mind, I ride my mountain bike 20-30 miles outside on a daily basis, up steep hills too, and am on the stair master a lot, so obviously I have a certain amount of lung strength. At times my breathing may feel labored and much of it is through the chest. At times, breathing through the abdomen is hard and feels unnatural and if I try to breathe through the abdomen, it won't work well. I can't just let it come to me and relax, it has to be somewhat forced. Now maybe this is caused somewhat from anxiety. However, it wouldn't hurt to get a better nights sleep and have oxygen flow properly from head to toe. So it's NOT an asthma problem. That is something completely different. I do have allergies though. But u know what? I got shots for years and it didn't help much. But I think my allergies are another issue and not the culprit, although they probably do make my sleep slightly worse, since everything is kind of related.

Julie · Post by **Julie** » Tue Apr 21, 2015 4:31 am

As someone who's worked for doctors all my life, I want to pass this along... the more detailed - past a point of using words like "I feel weak", or "I feel I can't get enough air (not 'oxygen') in", I feel a bit 'lightheaded' at times (when exercising or ?) - the less the doctor will pay attention. It's the way they are - unless they themselves ask you to break down your symptoms very specifically, past a certain point they stop listening, attribute your efforts to be too specific to anxiety (and/or even hypochondria), and simply rely on their own findings on examination, tests, etc. While I think Roby Sue's attempts to help you be more specific and centered about what you experience are admirable, just keep in mind that the doctor may or may not appreciate the minutiae of your description and just tune out after a certain point.

Please don't shoot the messenger here - it's what I've seen over and over again... keep it simple and focused on just a few points.

M'ohms · Post by **M'ohms** » Tue Apr 21, 2015 5:06 am

Reading your daily regimen of exercise makes me wonder if you might be overdoing it. Your body needs to recover from all the activity too. I know I used to be quite active, but as I've gotten older, I just can't do that much any more. "Forcing" myself to continue at a pace too strenuous for my age has resulted in a frozen shoulder, rotator cuff tear (other shoulder), carpal tunnel bother wrists and both elbows, compressed discs in neck, and painful misaligned hips. Too much exercise can also affect quality of sleep.

robysue · Post by **robysue** » Tue Apr 21, 2015 7:14 am

Julie wrote:As someone who's worked for doctors all my life, I want to pass this along... the more detailed - past a point of using words like "I feel weak", or "I feel I can't get enough air (not 'oxygen') in", I feel a bit 'lightheaded' at times (when exercising or ?) - the less the doctor will pay attention. It's the way they are - unless they themselves ask you to break down your symptoms very specifically, past a certain point they stop listening, attribute your efforts to be too specific to anxiety (and/or even hypochondria), and simply rely on their own findings on examination, tests, etc. While I think Roby Sue's attempts to help you be more specific and centered about what you experience are admirable, just keep in mind that the doctor may or may not appreciate the minutiae of your description and just tune out after a certain point.

Julie,

You and I are actually saying the same thing. I'm trying to get Enchanter to understand that he has to quit describing the problems as "my brain doesn't send oxygen or blood down my body and I feel I can't get it going. There is a blockage. A blockage of either oxygen, blood, or energy" and "my brain starts to feel like it's going to pass out from a lack of oxygen, even though my body can still lift the weight. So that's why I don't get a pump, because my brain won't do what my body wants it to do. It's as if my windpipe is choked of air and won't deliver oxygen to my brain to complete the lift." And start describing the symptoms in short, factual language:

I wake up feeling unrested and unrefreshed even when I get eight hours of sleep.
I'd like to sleep from midnight to 8 AM, but when I go to bed at midnight, I don't fall asleep until it's 4am. And I often sleep until noon.
I am tired and exhausted during the daytime, but I don't feel particularly sleepy during the daytime.
When I exercise I feel like I might pass out.

Julie wrote:Please don't shoot the messenger here - it's what I've seen over and over again... keep it simple and focused on just a few points.

Again, I think we're on the same page.

My detailed questions for Enchanter are designed to help figure out what the short, simple and nonspeculative way of describing Enchanter's problems actually is. Because the way he's described the problems to us are indeed using language that immediately makes a doctor pay less attention to what he's saying.

What to do if Apnea tests shows up negative?

What to do if Apnea tests shows up negative?

Re: What to do if Apnea tests shows up negative?

Re: What to do if Apnea tests shows up negative?

Re: What to do if Apnea tests shows up negative?

Re: What to do if Apnea tests shows up negative?

Re: What to do if Apnea tests shows up negative?

Re: What to do if Apnea tests shows up negative?

Re: What to do if Apnea tests shows up negative?

Re: What to do if Apnea tests shows up negative?

Re: What to do if Apnea tests shows up negative?

Re: What to do if Apnea tests shows up negative?

Re: What to do if Apnea tests shows up negative?

Re: What to do if Apnea tests shows up negative?

Re: What to do if Apnea tests shows up negative?

Re: What to do if Apnea tests shows up negative?