why is it not immediate?

Before CPAP, I felt like a complete wreck! I was waking up many times a night--with a rapid pulse, horrible headache, night sweats and memories of strenuous dreams fresh in my head. Day time, I was in a fog--I couldn't help dozing off any time I was seated--even while driving! I would snack all afternoon, as it was the only way I could stay conscious and keep my job.
First night with CPAP, no nightmares or sweating--first morning: no headache,--but still tired. I kept waiting for the tremendous burst of energy; but it never came. Gradually, I became aware that my brain was working better (a big plus at work); and I felt less and less unwilling to walk the dog.
Now I find myself running and romping with the dog--not feeling at all like an old lady of 63. Time elapsed: 7 months. It's not over; I still need to find a full face mask that fits me well enough to make the red frowny face go away. My mouth gets so dry; though I love my FX.
I am so grateful for this miracle of science that has restored me so well, so far.

I put up a thread awhile back asking for the people to post who had severe osa but were never tired before cpap and felt horrible afterwards, even
after a long adjustment period....

about six people showed up..

so there are others out there with these issues..

I think a few of them were on bipaps too..

Evan, if you can ask your doctor about the "severe never tired" people how they
succeeded, I think that would point you in the right direction. When you find out, let me know too!

I sure would like to know what the perfect storm is that is going on in our bodies that never lets us feel tired, even though we had severe
osa for years.. its quite a mystery, I wonder if there are any studies about that?

It sort of pissed me off I kept filing out that epworth sleepiness scale, and kept putting zeroes on it, so they never even thought I was an osa
candidate.. some of us are slipping thru the cracks!

While I felt a little better soon after, I still needed naps. I took me about 3 months before my energy and mood was noticbly better. Depending on work schedule I still take a nap on the week end. Now sleep thru the night and actually look forward to my bed now. Depending on the individual the effects vary.

robysue wrote:

boosmum wrote:For some people the result IS immediate, others it seems to be more of a gradual thing and i'm not really sure why. I wonder if severity of apnea plays into it?I was at 56ahi and that dropped immediately to 2.5ahi average. Not sure what the oxygen sats are doing now as don't have a machine at home to do that one, but before my lows were down to 74%.

If severity of apnea plays a role, it may be an inverse relation: My own hypothesis is that the more severe your apnea, the more likely you are to start feeling (much) better relatively quickly or immediately. The less severe your apnea, the longer it takes. Case in point compare boosmum's diagnositic figures to mine: Original RDI of 23.4 (with most events listed as "hypopneas with arousal" and NOT counted in my official AHI) and minimum O2 level of 91 or 92% during the diagnostic sleep study.

Another of my hypotheses is that the length of time to start feeling better may be more directly related to the severity of daytime symptoms of apnea. The more severe those daytime symptoms are, the more likely you are to start feeling better relatively quickly after starting CPAP. And note that severity of daytime symptoms is not necessarily related to the actual severity of the disease based solely on AHI/RDI numbers. Boosmum, how exhausted and sleepy did you feel during the daytime before starting CPAP? I bet you had a whole lot of daytime sleepiness and exhaustion issues that I wasn't dealing with before starting CPAP.

Ok, maybe I'm an outlier, but went from AHI of 65 to AHI 0 to 4 with CPAP, and after three months feeling bad enough so that's becoming an emergency situation.

As far as the sleep dept theory goes, I'm very skeptical. Someone did send me a link on one of these forums - if they can send it again, it would be helpfull.
The sleep dept idea basically doesn't make sense in my mind. regardless of what "sleep debt" you may have, why would that cause you to feel _worse_ once you get a good night's sleep? I don't understand the logic. The only theory I can think of explaining this (besides the obvious one of not getting to deep sleep because of the frequent arousals to adust the mask), is that perhaps we _are_ now getting to stage two or three deep sleep , and are not used to waking up from such a deep sleep because we've never had to before. But that's a stretch.

Once I discovered that my OSA was quite 'mild' (13 cm), I did not expect the big difference it has eventually made.
Maybe I was more conscious of the impact of sleep disturbance on me; kind of the opposite of people so used to pain, they never know they hurt.

nmevan wrote:hello folks
I'm wondering...how come I and others don't immediately feel better after using our new cpap, apap and bi-pap machines?
Wouldn't you think that more oxygen to your brain would have instant positive results?
I'm tired today...and it seemed as if I had slept most of the night through.
I've felt odd and groggy in the morning since I started treatment. It's been just over a week.
I'm pretty good for the first few hours of the day, but then I suddenly feel like I didn't get much sleep.
Is my body just getting used to more oxygen? Am I having more rem sleep? Will that make me feel odd and somewhat tired?
I know things will take time. But why? Why wouldn't you feel immediately better with more sleep, more REM, and more oxygen?
evan

I don't think anybody knows the answer to this one. I've been at it for over three months now and just feeling worse.
My best guess is that in my case, I never really get to a deep sleep because my mask will start leaking and it wakes me up and I
have to readjust it. , even when I change positions to sleeping on my back to rolling on my side, I remember doing it. In other words, I am
actually waking up just to roll over in my sleep.

And sleeping on my stomach? Used to. Not anymore because I would be smashing the nasal pillows in my face. And again basically my body sometimes wants to stretch out that way during the night, but now part of my brain needs to stay awake during the night to prevent me from doing that.

Basically I think there is no real science behind OSA treatment at the moment, other than the basic physics principle that some pressure will keep your airway open. Who's to say that an AHI of 65 is worse for your health than waking up 10 times during a night? Also, before treatment I got very mixed reviews from people listening to me sleep. In my condo, usually I snore loud enough to that other people have to sleep downstairs. On a recent vacation in Maine, I didn't snore at all. So granted, I'm not a medical doctor, but I have a hunch that if someone were to have more then one sleep study, the results would probably vary widely from one night to the next. Maybe some techs could chime in here and voice their opinion.

But yeah, it sucks. I was really excited to get this machine, hoping it would make it easier to get out of bed in the morning, and that I would be more focused both at work and at home. Unfortunately this "treatment" has only made things worse.

All I can say is that time is on our side, meaning that the technology can only improve, and hopefully more studies can be done. For example, who knows, right now my untreated AHI 0f 65 was labeled "severe". Will that still be in the same category 5 years from now, when better studies are done?
Who knows.

The situation is definitely a big mess right now.

minerva wrote:Sleep debt is cumulative over time, and it doesn't just go away. So, if you've had apnea for a while, you've likely accumulated a very large sleep debt that you may never 'pay off' completely.

I did this calculation when I first started therapy in 2006: I judge that I've had apnea most of my life, almost certainly since my teens. I was 46 when I started therapy, which means I had untreated apnea for at least thirty years. Let's say that half of the night's sleeps I got during that time were good, that means I had 4 hours of sleep debt for each night I slept (assuming 8 hours is necessary). Over thirty years that adds up to 43,800 hours of sleep debt. If I slept for 24 hours a day, it would take me five years to pay this back. Right now I'm sleeping 9-10 hours a night, so I'm getting about 2 hours extra. At that rate, I will have paid off my sleep debt in 60 years. If I make it to 100, I might pull it off.

Sleep well!

M.

Sorry, that's not the common understanding of how sleep dept works. I think you can only accumulate and pay back a limited amount (was it 24 hours??) of sleep debt. I take it you are just being funny, but just for the benefit of everyone else, no, sorry, long term sleep dept doesn't exist, at least as far as medical concensus goes. Now on the OTHER hand, someone here pointed out that it could be possible that it's not sleep dept that you're paying off, but it's really your body healing, which CAN be a longer term thing. Let's not confuse the two!

that is an interesting point!

I am supposed to be severe at forty three...
and then you had the eighty plus arousals per hour..

so why didnt I feel like crap during the day?

why do I only feel like crap when I use my apap?

there is a group of us I know who are not the norm, I actually felt awhile back that the apap was killing me... it was sucking the life out of me
every night i used it I was more exhausted..

What is the true definition of cpap intolerant anyway? someone who just says.. screw it, I hate this, or someone who spends a year trying and
feels worse then they ever did in their entire life?

I dont think this treatment is for everyone.. (I know that is not a popular statement to make here, but I believe it)

chunkyfrog, elena, and larry63 might not be data points in support of my first hypothesis, but they're both data points in support of my second hypothesis that the severity of your symptoms prior to diagnosis may be related to how fast you start to feel benefits of therapy:

chunkyfrog felt really bad (although her apnea is "mild") and started feeling benefits fairly quickly.

larry63 and elena felt pretty much asymptomatic (although their apnea is "severe") and they are bitg still waiting to feel merely as good as they did before starting CPAP.

PS to larry63: I really hope that you start to feel more like yourself soon. I've been following your and elena's stories here on cpaptalk since they both have elements of my own. And I know exactly what you mean when you say that you are now "feeling bad enough so that's becoming an emergency situation." Have you talked to anybody in your sleep doctor's office about the whole set of symptoms that have come on or gotten so much worse that you now are "feeling bad enough so that's becoming an emergency situation"? I ask because when I just couldn't face calling the sleep doctor's office and I was at my lowest point both mentally and physically, my husband took matters into his own hands and made the call for me. The autotitration that resulted from that phone call led to a reduction in pressure that has helped take the worst off the new symptoms. I'm pretty sure I would have continued to crash and burn and deteriorate even more if my husband hadn't insisted that on making that call and making me give the doctor's office a copy of the ten handwritten pages of new symptoms and other observations about how I was feeling since I started on CPAP. Best of luck in finding out all the issues around why CPAP is proving to be such a disaster for you.

elena88 wrote:I put up a thread awhile back asking for the people to post who had severe osa but were never tired before cpap and felt horrible afterwards, even
after a long adjustment period....

about six people showed up..

so there are others out there with these issues..

I think a few of them were on bipaps too..

Evan, if you can ask your doctor about the "severe never tired" people how they
succeeded, I think that would point you in the right direction. When you find out, let me know too!

I sure would like to know what the perfect storm is that is going on in our bodies that never lets us feel tired, even though we had severe
osa for years.. its quite a mystery, I wonder if there are any studies about that?

It sort of pissed me off I kept filing out that epworth sleepiness scale, and kept putting zeroes on it, so they never even thought I was an osa
candidate.. some of us are slipping thru the cracks!

Maybe the reason only 6 people showed up was that your criterion was that people were asymptomatic before treatment. Not the case with me.
Felt lousy before treatment. I just feel even worse now.

As far as not feeling tired despite having "severe" OSA for years, well, how defined a what AHI OSA is severe? Certainly I think just AHI as a measure of apnea severity is just to make it simple for health insurance to decide what to cover. For my diagnostic study showed an AHI 0f 65, yet me lowest oxygen sat was I believe 87%, which I think is not so bad. and again I don't have the papers in front of me at the moment, but most of the events were hypopneas and not apneas.

So yeah, technically according to the AHI guideline I have severe OSA (or at least /for tha night/ i did), but what does severe really mean?

robysue wrote: larry63 and elena felt pretty much asymptomatic (although their apnea is "severe") and they are bitg still waiting to feel merely as good as they did before starting CPAP.

PS to larry63: I really hope that you start to feel more like yourself soon. I've been following your and elena's stories here on cpaptalk since they both have elements of my own. And I know exactly what you mean when you say that you are now "feeling bad enough so that's becoming an emergency situation." Have you talked to anybody in your sleep doctor's office about the whole set of symptoms that have come on or gotten so much worse that you now are "feeling bad enough so that's becoming an emergency situation"? I ask because when I just couldn't face calling the sleep doctor's office and I was at my lowest point both mentally and physically, my husband took matters into his own hands and made the call for me. The autotitration that resulted from that phone call led to a reduction in pressure that has helped take the worst off the new symptoms. I'm pretty sure I would have continued to crash and burn and deteriorate even more if my husband hadn't insisted that on making that call and making me give the doctor's office a copy of the ten handwritten pages of new symptoms and other observations about how I was feeling since I started on CPAP. Best of luck in finding out all the issues around why CPAP is proving to be such a disaster for you.

Hi robysue. First of all I'm sorry if I gave the wrong impression. I had an awful time waking up in the morning and concentrating /before/ treatment. So it's not true at all that I was asymptomatic. It's just that the symtpoms got worse after treatment.

Thank's so much for your concern about what action I'm taking. You're right about the difficulty - when ou're late for work everyday and struggling just to even make 40 hour per week, it takes guts to be on the phone for an hour a day trying to arrange better treatment. The best thing I did was that one day, I flat out mentioned what was going on to my immediate manager, and hopefully they recognize what's going on, and that' it's not just that I don't care about the job.
Anyway, my current quest is to change DME's. I found a local one (maybe it was even you that pointed it out to me?) that even has a mask fitting room with a recliner. Little did I know how much time it would take on the phone especially with my insurance to figure out the details of how to make the switch.
Hopefully once I get a call back from the new DME, I will pack the equipment up, senD it back overnight to my current DME (who was affiliated with the ENT that referred me), and then call the insurance, give them the tracking number, and then the new company can take me in.

My sleep doc right now is simply my ENT. Whether this is good or bad I don't know. As far as the sleep center goes, I really don't know if they have a sleep specialist on staff there.

Well one step at a time I guess. At least I think going to a DME that is not affiliated with any of the doctors that I've been dealing with is at least a move in the right direction. I think (correct me if you think I'm wrong), that it's best to avoid a situation where there are any kind of business relationships between affiliations between the doctor, the sleep center, and the DME.

I was just wondering the same thing this morning when speaking with the lab technician while she was doing a blood draw. She asked me if I felt immediately better...... after 2 weeks, I really don't so it's a relief to see this discussion.

The last 2 mornings my blood glucose is a little better, but the one single change from Day 1 on CPAP is that I haven't gotten up once to go to the bathroom during the night, despite waking several times due to the contraption strapped to my face LOL.

I read that during REM sleep your kidneys (and probably other organs as well) slow down, so I think my kidneys are sending me a 'thank you' note.

The other thing I notice is that by around 8pm I'm getting sleepy, and if I'm watching TV or reading, will doze off - now I have that explained as well.

I'm just a newbie here, but already I love this forum and all the people here.

THANK YOU ALL SO MUCH for a great place to come and learn.

Hugs,
xenablue