What to do if Apnea tests shows up negative?

RS - You're absolutely right! I suppose I was just afraid she(he?) would go in, sit down and start elaborating on every smidgen, even if perfectly thought out as you suggested, so I thought I'd throw in a little reality.

M'ohms wrote: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.

I'm not overdoing it at all because my body got used to it and it has helped me in some ways. Sure, I've tried doing less but that doesn't do anything. Your body adapts, I'm still not old. Even seniors can run marathons if they put their minds to it.

Julie wrote:RS - You're absolutely right! I suppose I was just afraid she(he?) would go in, sit down and start elaborating on every smidgen, even if perfectly thought out as you suggested, so I thought I'd throw in a little reality.

Well she told me to be very specific. What am I supposed to do? DOWNPLAY it? That didn't work last time because then the doctor just says okay we'll take a test for this... I need a doctor that will listen to me. Isn't that what doctors are for? To help? I'm really confused now. I worked really hard trying to explain robysue my symptoms. If I just say I'm fatigued, then you think I'm just like other people when my symptoms are completely something else. What choice do I have? I have to speak out.

robysue wrote:

Julie wrote:

• 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.

But I don't actually think I'm gonna pass out. What I feel is the intricate and complex symptoms I described. Even if they don't make sense, that's what I feel. Do u understand why I get frustrated? I'm trying to explain it. It's not something simple to me. Doctors don't care to listen to your actual problems if they're complex?

Enchanter wrote:Well she told me to be very specific. What am I supposed to do? DOWNPLAY it?

In a word, yes. But I don't mean downplaying the impact on your quality of life -- clearly these symptoms are having a tremendous impact. What I mean is downplaying -- actually omitting -- all the speculation that comes with your description of your symptoms. All of your "I feel like my brain is doing this or not sending blood to...." narrative is not going to help you get heard in the medical system. kteague spoke to this problem in one of your earliest threads here. A sleep doctor can not and really, should not, be investigating the fact that you get some symptoms when you're lifting weights! If you believe you need a sleep study, then what your doc needs to hear is simple: "My sleep is always unrefreshing, I have daytime tiredness/fatigue, and I want to rule out sleep apnea as a possible cause." The doc then bears some responsibility if they refuse to refer you for a sleep study, and most docs hearing this would probably not refuse.

Enchanter wrote: I'm really confused now. I worked really hard trying to explain robysue my symptoms.

Unfortunately these very lengthy exchanges you're having with robysue are encouraging you to elaborate more on your symptoms but in ways that compound the communication problems rather than boil them down and make them more succinct and effective. And they also seem to be exacerbating your confusion and anxiety.

Enchanter wrote:What choice do I have? I have to speak out.

You do have a choice about how you approach this. If you "speak out" with your doctors the way you're giving descriptions to us here, you will have a very difficult road ahead. Your anxiety is truly your greatest enemy at the moment. With one day till your appointment, you're ramping up instead of settling down. I wish you could give yourself a break from the very unproductive spiral you're in.

Question -- have you had a carotid artery echogram? That would tell if you some kind of blockage or insufficient blood flow to your brain.

It is a cheap and easy test.

kaiasgram wrote:

Enchanter wrote:Well she told me to be very specific. What am I supposed to do? DOWNPLAY it?

In a word, yes. But I don't mean downplaying the impact on your quality of life -- clearly these symptoms are having a tremendous impact. What I mean is downplaying -- actually omitting -- all the speculation that comes with your description of your symptoms. All of your "I feel like my brain is doing this or not sending blood to...." narrative is not going to help you get heard in the medical system. kteague spoke to this problem in one of your earliest threads here. A sleep doctor can not and really, should not, be investigating the fact that you get some symptoms when you're lifting weights! If you believe you need a sleep study, then what your doc needs to hear is simple: "My sleep is always unrefreshing, I have daytime tiredness/fatigue, and I want to rule out sleep apnea as a possible cause." The doc then bears some responsibility if they refuse to refer you for a sleep study, and most docs hearing this would probably not refuse.

Enchanter wrote: I'm really confused now. I worked really hard trying to explain robysue my symptoms.

Unfortunately these very lengthy exchanges you're having with robysue are encouraging you to elaborate more on your symptoms but in ways that compound the communication problems rather than boil them down and make them more succinct and effective. And they also seem to be exacerbating your confusion and anxiety.

Enchanter wrote:What choice do I have? I have to speak out.

You do have a choice about how you approach this. If you "speak out" with your doctors the way you're giving descriptions to us here, you will have a very difficult road ahead. Your anxiety is truly your greatest enemy at the moment. With one day till your appointment, you're ramping up instead of settling down. I wish you could give yourself a break from the very unproductive spiral you're in.

Please listen to me!!!! I do have some anxiety but the physical sensation I feel is not the same thing!!!!!!! You don't know what I'm feeling!!!!!! It's not the same thing as when I wake up 365 years and feel this!!!!! Please stop talking about the anxiety. Like right now what I feel is anger because I have had to suffer for soooo long and I know what I feel! It's like someone with a broken arm, he may have anxiety but you cannot tell him that his broken arm is just anxiety. I have something that is something else!!!!!!!!!

Enchanter... No one is questioning that you 'feel' the symptoms, however what you don't seem to get is that while the feelings may be very real, they may NOT necessarily indicate that an actual physical event/condition etc. is taking place... your anxiety is creating the feelings and you need help with that. It's a bit like phantom pains from an already amputated limb - the feelings are valid, but the source is not.

Julie wrote:Enchanter... No one is questioning that you 'feel' the symptoms, however what you don't seem to get is that while the feelings may be very real, they may NOT necessarily indicate that an actual physical event/condition etc. is taking place... your anxiety is creating the feelings and you need help with that. It's a bit like phantom pains from an already amputated limb - the feelings are valid, but the source is not.

Julie, that can happen, but NO!!!!! The physical problem is taking place and it's not something made up!!!!

You are not ME!!!!!! You can't tell me it's coming from anxiety. You are not me!!!!

The physical sensation starts to lessen gradually as the day carries on. It's at it's worst as I wake up because I didn't sleep well. That is PHYSICAL, okay??? It's just as physical as getting drunk and feeling like crap the next morning.

My sleep is horrible. I feel absolutely like hell as soon as I wake up. So no matter what you tell me, it's physical and I feel it in my brain, not in my MIND. I feel it right now. It is 1 pm here, and it will probably get a little better in 2 hours as my brain is recovering. U don't FEEL your anxiety recovering minute by minute.
However my brain never recovers fully, probably because the sleep was so bad, regardless of the hours.

Please do not tell me it's anxiety, because 1 plus 1 is 2. And you're not going to change that.

Julie wrote:Enchanter... No one is questioning that you 'feel' the symptoms, however what you don't seem to get is that while the feelings may be very real, they may NOT necessarily indicate that an actual physical event/condition etc. is taking place... your anxiety is creating the feelings and you need help with that. It's a bit like phantom pains from an already amputated limb - the feelings are valid, but the source is not.

Just to be clear -- I'm not saying the same thing that Julie is saying. I'm not saying that anxiety is creating the feelings. I'm not saying that anxiety is causing the symptoms. Not at all. I'm saying that anxiety is seriously interfering with the ability to listen and to communicate effectively with doctors and get the sleep study -- or whatever medical tests are appropriate.

kaiasgram wrote:

Julie wrote:Enchanter... No one is questioning that you 'feel' the symptoms, however what you don't seem to get is that while the feelings may be very real, they may NOT necessarily indicate that an actual physical event/condition etc. is taking place... your anxiety is creating the feelings and you need help with that. It's a bit like phantom pains from an already amputated limb - the feelings are valid, but the source is not.

Just to be clear -- I'm not saying the same thing that Julie is saying. I'm not saying that anxiety is creating the feelings. I'm not saying that anxiety is causing the symptoms. Not at all. I'm saying that anxiety is seriously interfering with the ability to listen and to communicate effectively with doctors and get the sleep study -- or whatever medical tests are appropriate.

Well that may be true, but I need my physical problem to be treated. I'm 100 percent sure it's physical.

And if I'm wrong, then I'm just as crazy as Norman Bates from Bates Motel and am having delusions. That's not the case!

Enchanter wrote:

Julie wrote:Enchanter... No one is questioning that you 'feel' the symptoms, however what you don't seem to get is that while the feelings may be very real, they may NOT necessarily indicate that an actual physical event/condition etc. is taking place... your anxiety is creating the feelings and you need help with that. It's a bit like phantom pains from an already amputated limb - the feelings are valid, but the source is not.

Julie, that can happen, but NO!!!!! The physical problem is taking place and it's not something made up!!!!

You are not ME!!!!!! You can't tell me it's coming from anxiety. You are not me!!!!

The physical sensation starts to lessen gradually as the day carries on. It's at it's worst as I wake up because I didn't sleep well. That is PHYSICAL, okay??? It's just as physical as getting drunk and feeling like crap the next morning.

My sleep is horrible. I feel absolutely like hell as soon as I wake up. So no matter what you tell me, it's physical and I feel it in my brain, not in my MIND. I feel it right now. It is 1 pm here, and it will probably get a little better in 2 hours as my brain is recovering. U don't FEEL your anxiety recovering minute by minute.
However my brain never recovers fully, probably because the sleep was so bad, regardless of the hours.

Please do not tell me it's anxiety, because 1 plus 1 is 2. And you're not going to change that.

YOU need to calm down and quit attacking people who are trying to help you. You've been posting on a CPAP help forum about things and then arguing with those who try to answer your posts.
You will find out more after you've had your sleep study. Your anxiety is out of control.


Den

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Enchanter,

Let me clarify some things:

1) I am trying to help you figure out the best way to describe your problems in language that someone other than you can understand well enough to get an accurate idea of what it is you are experiencing. I have the patience to continue to ask for very specific clarification on many of the things you say, and I appreciate your specificity in answering my questions. Most docs don't have this amount of patience when dealing with their patients because of the number of patients they are required to see each and every day.

2) Once you understand how to communicate what's going on to me and others here at the forum, then the next stepp will be it figuring out how to tell the doc about what's going on in language that is short and simple and to the point, the way Julie and I both think you need to do when talking to the doctor. And when you have the appropriate short, simple, and to the point way of describing your problems, you will probably find that the doc does a better job of actually listening to you. And that will help the doc to come up with ideas on might be causing your problems.

That said, let's look at some of your answers to my previous questions.

Enchanter wrote:

robysue wrote: 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.

Do you have a TV in your bedroom? When you wind up browsing the internet, are you doing that on a laptop, tablet, smart phone while you are in your bed? Or do you get out of bed and go into a different room?

Enchanter wrote:

robysue wrote: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.

Melatonin is sold in pill sizes that range from 1mg to 10mg. And the recommended dose for melatonin is actually no more than 150-500 micrograms. (And there are 1000 micrograms in one mg.) So the size of the pills matter.

And taking too much melatonin can make you feel pretty crappy. And too much melatonin at the wrong time can also mess with your sleep in a pretty significant fashion.

Enchanter wrote:

robysue wrote: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.

So you know some of the basics of good sleep hygiene. But there's a whole lot more to it than what you describe.

The reason I keep harping on the insomnia-related stuff is this: CPAP fixes one form of bad sleep and only one form of bad sleep. It fixes problems stemming from sleep disordered breathing. But it does NOT fix any other cause of bad sleep. And so if the only cause of the bad sleep is untreated OSA, then CPAP can fix it. But if there are multiple causes of the bad sleep, then CPAP by itself is not going to fix the bad sleep. It will fix the part caused by the sleep disordered breathing, but it won't automatically fix an insomnia problem. Or a delayed sleep phase problem. Or a PLMD problem. And until all the sleep problems are addressed, the sleep will likely remain bad.

And speaking from hard experience: If you've got a lot of insomnia problems as well as sleep disordered breathing problems, then the adjustment to CPAP can be a long, hard slog through a swamp of bad sleep problems: Sleeping with a six foot hose attached to your nose is not natural, and the sensory stuff coming from the CPAP often aggravates the insomnia in the short term.

In other words, given your full descriptions of your sleep problems, it seems likely that you have OSA, but it also seems likely that you have other sleep problems in addition to the OSA. And if you start CPAP to treat the OSA, you might not find CPAP is the "magic wand" that fixes all your sleep problems. If you have OSA, you will probably need to work on both adjusting to CPAP AND fixing all your other bad sleep problems before you start to feel substantially better during the daytime.

Enchanted wrote:

robysue wrote: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.

Lots of people don't wake up instantly in the morning. There's nothing pathologically wrong with being sleepy for 15 minutes or so when you first get up---particularly if you are getting up at a time that does not match up with your circadian rhythm.

As for "trying to get back to sleep", well if it doesn't work, that's a sign that your body is actually ready to get up and it's just taking a few minutes for your brain to fully wake up.

The problem seems to be that even after you are fully awake (i.e. no longer sleepy), you don't feel particularly good. As in you're still tired and you don't feel rested. And the tiredness and exhaustion lasts most of the day? And it happens every day. The way to describe that symptom is by simply telling the doctor, "I wake up unrested and unrefreshed even after 8 hours of sleep and I'm physically tired and exhausted all day long, but I'm not sleepy during the day."

Enchanted wrote:

robysue wrote: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.

The phrase " it's my brain that feels it's not getting the blood or oxygen" is the problematic phrase. That phrase doesn't really mean anything to either me or your doctor because you're mixing up how you feel (which we don't know) with what you think is causing you to feel that way (the lack of blood or oxygen getting to your brain).

Yes, I've taken seditives that have affected me the next day. It happens when I take Ambien a lot. But the way I feel the next day is best described objectively as: I don't feel fully alert. I have a hard time concentrating on tasks that require clear thinking. I'm physically tired. And I'm more grumpy than I am when I don't take the Ambien.

See the difference between how I describe what happens to me when I am feeling left-over side affects of Ambien as compared to your description of what you're going through?

More in a bit.

Enchanter wrote:

Julie wrote:RS - You're absolutely right! I suppose I was just afraid she(he?) would go in, sit down and start elaborating on every smidgen, even if perfectly thought out as you suggested, so I thought I'd throw in a little reality.

Well she told me to be very specific. What am I supposed to do? DOWNPLAY it? That didn't work last time because then the doctor just says okay we'll take a test for this... I need a doctor that will listen to me. Isn't that what doctors are for? To help? I'm really confused now. I worked really hard trying to explain robysue my symptoms. If I just say I'm fatigued, then you think I'm just like other people when my symptoms are completely something else. What choice do I have? I have to speak out.

Doctors that listen to long, drawn out, confusing things are generally psychiatrists. Or some other psych doctor. Not that they wouldn't be helpful, maybe one could help you muddle through to being more clear and concise...Robysue and the rest aren't doctors...we're all just here with our own version of one health issue we have in common. And, while we can address some of your concerns, you need to bring this all up with your doctor for best results.

Enchanter - "I feel fatigued".

Doctor - "Do you feel that way all day, every day?"

E - Yes.

D - Tell me about your lifestyle - work, exercise, food, previous illnesses, etc. etc.

E - Gives facts...

D - Well, we'll do some tests to see what's happening... bloodwork, some endocrinology, maybe hormones, etc. etc.

E - But what about all the feelings I have about blood flow and my brain?

D - First we need to rule out common causes of fatigue. Then we'll look at some other work-ups as well as your daily habits, etc.

E - But what if I have apnea?

D - We'll find out - in due time - along with everything else.

E - But.. what about ...

D - Give me a CHANCE TO SEE what's going on! I can't just zoom in on your feelings of this or that, especially when they are that subjective and don't necessarily add up to an instant, definitive, specific diagnosis.