Am I dead, yet?

[Nonbreather]

I've had my CPAP for about a month, now, and I don't really see a change. I'm still waking a couple of mornings a week in a state of near paralysis from fatigue. This makes me wonder about one thing my doctor said that was a surprise to me. He said that I did, indeed, have a sleep apnea, but that wasn't the worst of my problem. He said the reason the sleep study techs had come running into my room yelling about "emergency protocol" was that I just plain stop breathing, sporadically, through the night. It breaks down to only about 12 seconds per hour, but that can add up, I guess. The way he said it seemed like he thought it was different from the usual apnea. My GP had a fit and started talking about brain damage.
Why, you might ask, did I not yell, "What do you mean? Why am I not breathing?", etc. Simply because I was too brain damaged to think of the questions at that time. I have stopped asking a lot of questions because no one seems to have answers and, if they do have one, I seldom remember what it was, later.
Now that I'm sitting here with the real experts who actually live the life, and I can see it in black and white if I forget the responses, I am wondering if this is common among others on the forum? Am I one of the living dead?
Oh, yeah. One more symptom is that I tend to ramble when I talk.....

[GoofyUT]

Relax. While most apneas are caused by the "windpipe" collapsing on itself as we try to breathe in (obstructive apnea), there are many who stop breathing because the brain simply "forgets" to send out the right signals to get us to breathe. This is called "central apnea" and is NOT uncommon. It is usually associated with some other condition though, but not necessarily "brain damage."

There are brand new, emerging technologies that are designed specifically to adequately treat apneas of a central origin, and you ought to talk with your doctor about them. CPAP or auto-titrating PAP may NOT be the best for managing central apnea. But, some of the new technologies like ResMed's AutoSet CS2 ADAPT or Respironics HeartPAP may be just the ticket for you. These are new enough that many sleep docs may not yet know of them, but MAKE IT A POINT THAT YOURS DOES!!!!

Hope this helps.

Chuck

[Sleepless in St. Louis]

Forgetfulness is a classic symptom of apnea. If you are just starting xPAP, it may take a while for you to pay back your sleep dept before you start feeling better.........................(what was I saying.................I lost my train of thought.......forgot what I was saying............) oh ya, see we all do it. But seriously, you should consider registering and then participating in the discussions. Ask questions and give us more information about your treatment, machine, mask etc. If it's a common problem, or even something more of a challenge, someone here has likely faced it before and found ways to overcome whatever the problem was. All this is worth it believe me when I say that, but it takes a little patience, a willingness to experiment a little and the desire to take charge of your treatment and your life. We've all been where you are to some extent. So Welcome.

[Offerocker]

Nonbreather: (fellow rambler)

Have you been to a Neurologist who specializes in Sleep Disorders?

You may also have other problems which can be treated, like short-term memory loss.

I would also recommend that you take a person you trust to all medical appointments with you, and have them take notes. Or hire a caregiver for 2 hours.

You also can ask for your medical records from your doctor, and have the printed information for your referral. In my state (Pa), they MUST provide you with that information upon request. You may need to sign a release form, no big deal.

I also was in fear of brain damage, but it's hard to tell!! LOL !!
I can still solve problems, so that's what's important.

Keep at it, TAKE NOTES at all visits - in same notebook, and be in charge of yourself, and Good Luck.
Let us know how you're doing, and stay with it, and us.

[Snoredog]

[quote="Nonbreather"]I've had my CPAP for about a month, now, and I don't really see a change. I'm still waking a couple of mornings a week in a state of near paralysis from fatigue. This makes me wonder about one thing my doctor said that was a surprise to me. He said that I did, indeed, have a sleep apnea, but that wasn't the worst of my problem. He said the reason the sleep study techs had come running into my room yelling about "emergency protocol" was that I just plain stop breathing, sporadically, through the night. It breaks down to only about 12 seconds per hour, but that can add up, I guess. The way he said it seemed like he thought it was different from the usual apnea. My GP had a fit and started talking about brain damage.
Why, you might ask, did I not yell, "What do you mean? Why am I not breathing?", etc. Simply because I was too brain damaged to think of the questions at that time. I have stopped asking a lot of questions because no one seems to have answers and, if they do have one, I seldom remember what it was, later.
Now that I'm sitting here with the real experts who actually live the life, and I can see it in black and white if I forget the responses, I am wondering if this is common among others on the forum? Am I one of the living dead?
Oh, yeah. One more symptom is that I tend to ramble when I talk.....

[GoofyUT]

The post from the fella preceding this one opught to be taken with a huge grain of salt. This fella doesn't have the background or training to be in the same GALAXY as a knowledgable medical professional, so take his post for what its worth.

There are lots of reasons that folks experience interuptions of normal breathing that are not obstructive in nature. Most of these are treatable easily, and therefore, you shouldn't worry needlessly. Before you start worrying about your brain stem looking like swiss cheese, or some other such nonsense, do talk with a doctor that you trust. Take the time to write down the questions that you want answers to. Many of us get rattled when going to see a doctor since we typically have only a short time with the doctor, and we're anxious to begin with since our health is in question, and so we may forget something that occurs to us as soon as the doc leaves the room. This is NORMAL, and doesn't necessarily mean ANYTHING (certainly not brain damage).

Don't go fretting until a medical professional that you trust has examined you and given you his/her best information and opinions, and then, only on the basis of what he/she has told you. ABSOLUTELY DON'T FRET on the basis of some knuckleheaded post that you read here. Its worth EXACTLY as much as you paid for it. There are LOTS of new treatment alternatives that you can and ought to consider, to make sure that you'll be fine.

Hope this helps.

Chuck

[Snoredog]

The post from the fella preceding this one opught to be taken with a huge grain of salt. This fella doesn't have the background or training to be in the same GALAXY as a knowledgable medical professional, so take his post for what its worth.

There are lots of reasons that folks experience interuptions of normal breathing that are not obstructive in nature. Most of these are treatable easily, and therefore, you shouldn't worry needlessly. Before you start worrying about your brain stem looking like swiss cheese, or some other such nonsense, do talk with a doctor that you trust. Take the time to write down the questions that you want answers to. Many of us get rattled when going to see a doctor since we typically have only a short time with the doctor, and we're anxious to begin with since our health is in question, and so we may forget something that occurs to us as soon as the doc leaves the room. This is NORMAL, and doesn't necessarily mean ANYTHING (certainly not brain damage).

Don't go fretting until a medical professional that you trust has examined you and given you his/her best information and opinions, and then, only on the basis of what he/she has told you. ABSOLUTELY DON'T FRET on the basis of some knuckleheaded post that you read here. Its worth EXACTLY as much as you paid for it. There are LOTS of new treatment alternatives that you can and ought to consider, to make sure that you'll be fine.

Hope this helps.

Chuck

Thanks for the reminder Chuck! What upChuckie is trying to say is he is the only brain damaged resident expert here.

I'd have to agree with that.

[krousseau]

You are definitely living-no question. You do sound sleep deprived-make no further assumptions about your brain until you have been well rested for several months. To get that rest you need the right equipment. I'll repeat what other people have said here-please fill in your profile with the type of XPAP and mask you have and your pressures. There are different types of positive airway devices and some are better for different types of apnea.

The situation you described during your sleep test was very unprofessional and unnecessary. People who are supposed to be helping you should not be doing things that lead to anxiety-hearing someone yelling "emergency protocol" during you sleep is guaranteed to cause an adrenalin rush. Not good for further sleep and not good for memory.

You say you have memory lapses-and don't like to ask questions. Do you have anyone who can and will be assertive for you. Maybe, with your permission they could post some info and ask some questions here on your behalf.

Please stay with us-I think you will be surprized what proper treatment and sleep will do for you.

[NightHawkeye]

The post from the fella preceding this one opught to be taken with a huge grain of salt. This fella doesn't have the background or training to be in the same GALAXY as a knowledgable medical professional, so take his post for what its worth.

Sigh . . .,

All jocularity aside, it is the dearth of information we get from the aforementioned "knowledgeable medical professionals" that brings many of us to this forum. I'll also add, that includes you too, Chuck.

Regards,
Bill

[Snoredog]

The post from the fella preceding this one opught to be taken with a huge grain of salt. This fella doesn't have the background or training to be in the same GALAXY as a knowledgable medical professional, so take his post for what its worth.

Sigh . . .,

All jocularity aside, it is the dearth of information we get from the aforementioned "knowledgeable medical professionals" that brings many of us to this forum. I'll also add, that includes you too, Chuck.

Regards,
Bill

He's just mad cause he's wrong all the time

[janilee]

Remember Nonbreather? Well, she was apparently so overwhelmed by thi kindness of strangers that, when she tried to add this reply by responding, she found she had done something incorrectly when she originally registered. As a result, she has had to register all over again.
Hi, it's me.
Now, on to business: Thank you all for such helpful, insightful, and empathetic answers.
GoofyUT, I'm hoping that there is more information contained in my sleep study info that might help to determine the type of apnea I have and, just as soon as I remember where I put it, I will try to find that info. It sounds like it might help to cut down some of the guesswork and help me work more quickly toward a resolution. (Hey, that looks pretty good. Maybe I'm awake.)
Sleepless and uh....who else said it?...I have updated my profile, but didn't know how to answer about the card. Does everyone have one? How do I locate info on it and get whatever wisdom is contained?
Offerocker, there are now three doctors involved: a psychiatrist (the first I consulted because I assumed that depression over the loss of my mother was responsible for my depression and memory loss), my GP (the second to be involved because the psychiatrist was out of ideas), and my pulmonologist (the third to be involved because I asked for a sleep study since both the others were out of ideas and out of meds and vitamins to try). Nice to meet another rambler. That will explain why I went that roundabout route to ask if a neurologist should be consulted rather than a pulmonologist? He, by the way, is the only doctor of the three with whom I have actually had previous experience. I came to know him when he was consulted on my mother's pneumonia.
Snoredog, play nice! I think I might be a knucklhead, too. It takes time to trust a doctor and, though I think all my physicians are interested in me and have my interests at heart, I've found that all doctors tend to stick to the tried and true diagnoses and treatments because they are stuck on that first line of the oath. I've known none of these doctors for very long because I moved to my city only a couple of years ago. I'm still trying them out. And, I learned a long time ago that experience is, indeed, the best teacher. That's why I'm on this forum. I'm getting the feedback I need so that my questions will sound intelligent and informed. That tends to send doctors scurrying for more intelligent and informed answers. So....
Yeah, Bill, what you said.
I've now reached critical confusion mass, trying to make myself answer individuals so you will all see how much I appreciate your responses so, if I missed you, give me another shot down the road.
I'll now go start a new topic about another concern: the people who are more arrogant than doctors, in my limited opinion, the CPAP "techs" and mask fitting.
Thanks again,
janilee

[krousseau]

Hi-hoped you would be here this morning. Glad you worked your way through those three docs and that it didn't take too long to get to a sleep study. Memory is affected by many things; stress, depression, lack of sleep, depression, and is self perpetuating. Once you think the memory is going-you worry more-then you forget more. So until you get rested get a big 3 ring binder and put all your test results & questions in the same place.
For starters-You do not sound like a person with a swiss cheese brain-you sound overwhelmed by an ordeal that may have begun with your Mother's death and continued through 3 docs trying to make a diagnosis and a sleep study with tecks yelling.

The card is for some Respironics Remstar models. and saves info re: hours of use, snores, apneas and other factors. You would need the card, software, a card reader, and windows on your computer to read the info on the card. You can add that equipment when you are ready. First thing is to make sure you have the right positive airway pressure device and a mask you can use fairly comfortably. I'm not real familiar with all the CPAP machines but there are people here who are.

Don't worry about the sleep study techs yet-the people in the sleep business are a constant topic here. Lets get on to your treatment. How is treatment going-are you able to sleep with the device going? Any problems with the mask? Hope we hear from you soon.

[Offerocker]

I'll now go start a new topic about another concern: the people who are more arrogant than doctors, in my limited opinion, the CPAP "techs" and mask fitting.

"Limited opinion?" Janilee, you're in for a surprise! Many of us have had nightmares due to those you mentioned! That's going to be a subject with many posts!! But - sounds like fun!! Hang on, it's gonna be a bumpy ride! .

[-SWS]

Nonbreather, based on what you told us I honestly think it's time for a second opinion from a certified sleep physician. Reading between the lines I kind of suspect the sleep tech(s) performing your study may not have been all that experienced, especially with central apneas.

I would recommend finding a second board-certified sleep specialist who happens to be a neurologist from the list below, and hopefully one your insurance will cover. You should request copies of your PSG sleep study for that second sleep physician to carefully review. By all means be sure to get the detailed charts (the ones with PSG data channel waveforms) as well as the typical text-and-table summary, which tends to be very high-level.

Here's a listing of Diplomates of the American Board of Sleep Medicine:
http://www.absm.org/Diplomates/listing.htm

[christinequilts]

You definetly need to get some more answers about what was happening during your sleep study and the best way, as SWS recomended, is to sit down with a doctor who specializes in sleep medicine who can explain your test results to you. What you are describing are central apnea- when for various reason, there is a communication problem between your brain, lungs & the muscles we use to breath, leading to you missing a breath. A certain number of central apneas are normal, expecially as we shift from one stage of sleep to another; and other can be the result of or even a symptom of Obstructive Sleep Apnea. Well central apneas are not uncommon, having them in excessive numbers and being diagnosed with Central Sleep Apnea is. I happen to be one of the unlucky people who have pure Central Sleep Apnea and during my original study, I was having more then one central apnea per minute; and even during titration, the best they could do is reduce it to around 1 central apnea every 2 minutes.

If you're correct and it was for only 12 seconds each hour, then you had about 1 central apnea per hour, which wouldn't be pretty normal. Even if you had 12 per hour, if you had a high number of obstructive apnea per hour, the central apnea could still be a symptom of the OSA. If they happened while you were being titrated on xPAP, higher pressure can cause central apnea in some people. Did they put oxygen on you when they came in & said 'emergency protacal'? Or is that when they applied a mask for CPAP? My best guess, and its just a guess, is that your oxygen level may have went too low for too long- that is a much more likely scenario for the tech coming in your room like that. Right now, you have too little information to go on and your GP was more then likely over reacting- that is why its important to have a doctor who understands sleep disorders explain your results.

In the mean time, here is an article on CSA that may help you understand what may be happening a little better so you are more prepared for your next doctors visit- British overview of CSA