Is It Me Or Were My Expectations Just Too High?

[Hey Man]

So I have been using the CPAP for a while now with a full face mask that I really like after trying a few (no leaks and very comfortable), but I don't feel any more well rested in the morning prior to starting the CPAP. I am technially sleeping better in that I am not having the breathing issues that I had in the past ala snoring and moments through out the night where I stop breathing for a few seconds, but I am not waking up with this burst of energy and rejuvination from a great sleep.

In doing research about the CPAP when I was told by doctors that I needed to use CPAP, I was reading comments from people saying that they are having the best sleep ever and finally feel like a new man (or woman) - who are able to be productive and motivated during the day because they now get the sleep that their mind/body has been craving for years. I don't feel this way.

Were my expectations about CPAP too high? Is it really more about getting a more healthy sleep than you have been getting (if only a little bit) vs. getting the best sleep possible and having all the energy in the world in the morning because you have been refreshed and rejuvinated.

I would appreciate any feedback about CPAP and what one should expect ultimately. Of course different people have different experiences, but there is probably a general consensus at this point more or less. How many here have become "new people" so to speak because CPAP and how many are just sleeping slighty better or getting a better sleep on a health level.

Thanks.

[brazospearl]

Welcome, Hey Man! Some people feel substantially better quickly, others take several months to notice any difference. This may (or may not) be attributable to something called sleep debt, which is the idea that it takes many hours of effective sleep to undo the damage caused by years of untreated apnea. It could also be that you need to adjust your settings. A small difference in pressure can equal a big difference in results. Not knowing what your machine and settings are, it's difficult to give you more precise suggestions. It would help if you posted your equipment (text, not pix) and settings so that we could be more helpful. Hang in there, and read all you can on this forum. You WILL feel better!

[OutaSync]

I'm one of those people who has never woken up feeling refreshed. I probably get woken up by the mask as many times as I was woken up by apneas before CPAP. However, I think that we are in the minority. From what I've been reading for the past three years, most people improve significantly with CPAP. I'm sure that there are benefits of being more oxygenated throughout the night, so I'm sticking with it, even though I feel like CRAP on CPAP.

Bev

[Wulfman]

So I have been using the CPAP for a while now with a full face mask that I really like after trying a few (no leaks and very comfortable), but I don't feel any more well rested in the morning prior to starting the CPAP. I am technially sleeping better in that I am not having the breathing issues that I had in the past ala snoring and moments through out the night where I stop breathing for a few seconds, but I am not waking up with this burst of energy and rejuvination from a great sleep.

In doing research about the CPAP when I was told by doctors that I needed to use CPAP, I was reading comments from people saying that they are having the best sleep ever and finally feel like a new man (or woman) - who are able to be productive and motivated during the day because they now get the sleep that their mind/body has been craving for years. I don't feel this way.

Were my expectations about CPAP too high? Is it really more about getting a more healthy sleep than you have been getting (if only a little bit) vs. getting the best sleep possible and having all the energy in the world in the morning because you have been refreshed and rejuvinated.

I would appreciate any feedback about CPAP and what one should expect ultimately. Of course different people have different experiences, but there is probably a general consensus at this point more or less. How many here have become "new people" so to speak because CPAP and how many are just sleeping slighty better or getting a better sleep on a health level.

Thanks.

You obviously have no idea how often your questions get asked on the forum. For some reason (maybe what doctors are telling their patients), the new users have some notion that as soon as they start on this therapy......many, many years of sleep and oxygen deprivation will miraculously be reversed. It's NOT going to happen.......at least for the vast majority of users. I hate to burst your bubble, but that's the reality.......it can take MONTHS. It's "baby steps".

How long? You've been a member of the forum for less than a month.
What specific make/model of equipment do you have? Please fill out your profile so we won't have to keep asking.
If you have a data-capable machine and the software to interpret the data, your therapy MIGHT see improvements sooner......once you get your therapy tweaked to near-perfection. But, it can still take a good deal of time to reverse all the damage that's been done to your body.

But, you gotta hang in there.


Den

[roster]

Hey Hey Man,

Do you have data from your machine to show whether or not the CPAP therapy is effective for you?

You could still be having many apneas and not know it, if you don't have data.

It is very common to start out with an ineffective therapy. That is the biggest reason behind 50,000 members being registered in this forum.

Fill out your equipment profile (text, not images) and let us know some details about your diagnosis and current machine settings.

[kteague]

When I first started, I was desperate for a quick response to cpap and disappointed that it was not. I'm just glad that didn't stay my experience. Once I came here and began to learn how to troubleshoot and got a data capable machine, I began to turn around. I have other issues contributing to my poor quality sleep (RLS/PLMD), so I still don't feel good, but I don't feel like I'm flirting with death like before cpap. To me, being sure the treatment is effective is #1 (mine wasn't). At that point, since the feel-good factor wasn't there, I had to adopt a fact based appreciation, just knowing my brain and organs were not being further damaged by low oxygen and adrenaline overload. If effective treatment over time doesn't garner results, other contributors should be considered. OSA may be just a part of our medical picture, as things like some meds, anemia, diabetes, thryoid dysfunction, and other sleep disorders can lead one to think the cpap is a waste of time. It's not. Even with no other issues and good therapy, it is reasonable to expect some recovery time. Our body and brain has been assaulted and needs time to heal. My personal theory is that once the good sleep comes, our need for healing causes a craving for even more of that good sleep, and can be perceived as feeling worse. When that's the case, time should make a difference. My heart goes out to those who have to live in that disappointment.

[debo415]

I have been on my bi-pap machine since February and so far I awake feeling better, but not necessarily ready to hit the ground running. While my awakening energy may not be overwhelmingly different, I have noticed that my energy level over all has greatly increased. I am able to take walks without getting winded...I can do housework without having to sit down every few minutes...I agree with the poster who said it takes "baby steps"....every little improvement is a blessing...and I know someday I will wake up fully refreshed and ready to start my day with a lot more energy.....just not right now....not yet!

[chunkyfrog]

When I first started 'kissing the hose', I noticed feeling less alert on arising. I have learned that what I was accustomed to was loads of adrenaline built up over the night while I literally suffocated in my sleep. This adrenalin generally ran out about 1:00 PM every day, at which time I could 'zone out' or even fall completely asleep at any time, even at my desk. Within a few days of treatment, I noticed myself waking up less 'up', but staying awake all day, and even through my favorite TV shows in the evening. Now, I even feel like I'm smarter at work. Before, I was awakened several times a night with vivid, strenuous, and often disturbing dreams. Imagine killing kittens with a pick-axe because they were 'possessed'. Now, I hardly remember any of my dreams; I guess they are not shocking enough. I am gradually being weaned off my own adrenaline. Good deal, because it can kill you.

[roster]

.... I have learned that what I was accustomed to was loads of adrenaline built up over the night while I literally suffocated in my sleep. ...

That is a subject that is not discussed very often here. Thanks for bringing it up.

I was at a longtime client ten days ago. The general manager was making a presentation to a small group of his best loyal customers at 9:00 a.m.

He was delayed and called one of his "lieutenants" to make the presentation. This lady had put together the PPT presentation and was intimately familiar with, and on excellent terms with all of the customers present.

She was a nervous wreck, rushed through the presentation and was talking at a "shout" level. Some of the customers said things to try to put her at ease and when her 30-minute presentation was nearing the end she had calmed down only a little.

I told the lady very gently and confidentially a year ago that she has symptoms of sleep-disordered breathing and needs to be screened by a sleep doctor. She has a narrow, recessed chin, is obese, and shows up at work pale skinned and puffy-eyed. She is in denial.

She is frequently loud and jumpy in the morning and a little more relaxed at the end of the day. I strongly suspect she is full of adrenaline when arriving at the office most mornings.

[davecpap]

For some reason (maybe what doctors are telling their patients), the new users have some notion that as soon as they start on this therapy......many, many years of sleep and oxygen deprivation will miraculously be reversed.

I've been on CPAP for 3 weeks, and I'm not bouncing off the walls with energy. My sleep doctor said that I should feel better very quickly and was shocked when I initially felt worse! After 2 weeks he declared the CPAP therapy a failure (since my #s were good) and wanted me to try provigil or a dental appliance. I went to see another sleep doctor, and after an hour of discussion, he also said I should be feeling fantastic by now. Both are dedicated sleep clinicians who operate their own sleep clinics, both have been in the field for a long time. Why is it that these physicians are telling me one thing, but people who actually use CPAP therapy (the folks on this forum) say another? Both docs immediately suggested provigil. The 2nd sleep doc was willing to let me give it another month (for a total 6 weeks of therapy) before revisiting the provigil question.

Also, both docs mentioned that CPAP therapy often isn't effective for folks with mild sleep apnea (like myself). I haven't found much info to backup that statement. Anyone else being told this by their physician?

[brazospearl]

I think Rooster is correct that we need to mention the whole adrenalin thing more often. Some of us had huge amounts of stress hormones dumping into our bodies all night for years; it takes time to adjust to not having that. Pre-cpap I never slept until the alarm went off and woke up quickly. While I never fell asleep at work (hard to do as a teacher!) or in public, once I got home I'd doze off as soon as I sat down. Now that I'm getting effective therapy I sleep till the alarm goes off and get up more slowly, but I'm focused and clear-headed way into the evening. I think that's all due to readjusting to not having the stress hormones raging around. Just sayin'.

[DoriC]

My husband's sleep study showed moderate/severe periodic limb movements with arousals and non-arousals. The "specialist" was insisting on giving us an RX immediately which I resisted until we spoke to our Internist. He was willing to wait and see if these PLMs were being caused by the sleep apneas my husband was experiencing and might improve with therapy. He was right and the movements are very minimal now, although that is not always the case and patients might need meds if they disrupt sleep. It also took several months of using a data-capable machine, reading the reports, asking lots of questions here, and getting the correct pressure settings,mask adjustments, good sleep hygiene,etc, before we saw the real benefits of this therapy. It takes patience and education but is well worth it.

[Wulfman]

For some reason (maybe what doctors are telling their patients), the new users have some notion that as soon as they start on this therapy......many, many years of sleep and oxygen deprivation will miraculously be reversed.

I've been on CPAP for 3 weeks, and I'm not bouncing off the walls with energy. My sleep doctor said that I should feel better very quickly and was shocked when I initially felt worse! After 2 weeks he declared the CPAP therapy a failure (since my #s were good) and wanted me to try provigil or a dental appliance. I went to see another sleep doctor, and after an hour of discussion, he also said I should be feeling fantastic by now. Both are dedicated sleep clinicians who operate their own sleep clinics, both have been in the field for a long time. Why is it that these physicians are telling me one thing, but people who actually use CPAP therapy (the folks on this forum) say another? Both docs immediately suggested provigil. The 2nd sleep doc was willing to let me give it another month (for a total 6 weeks of therapy) before revisiting the provigil question.

Also, both docs mentioned that CPAP therapy often isn't effective for folks with mild sleep apnea (like myself). I haven't found much info to backup that statement. Anyone else being told this by their physician?

Is that a rhetorical question or do you REALLY want an answer?

If you do, my guess would be that they've had no "real-world" knowledge/experience.......just what they've learned from books. These types of doctors are the ones who put too much faith in one-night sleep studies and "compliance" to their prescribed pressures, and their patients usually end up with non-data-capable machines.......and then Provigil.

My prescription also says 2L of O2. My daytime oxygen levels were in the 90's......my rationale was that if I was "breathing" during my sleep, I wouldn't need the extra oxygen......and I've never used it.


Den

[Chainsaw2608]

I am new to the CPAP world as well. Got my machine on July 8th. Some days are better than others. I'm still trying to get comfortable sleeping with a mask. While I haven't had the energy surge I will say that I feel more focused at work, and don't have the desire to take a nap everytime I sit down at home. I plan on sticking with it and after joining this forum and reading some of the issues with CPAP, I plan on pressing my DME for a machine that will give me feedback and not just compliance.

Good luck and welcome!

[nosenabook]

....
Also, both docs mentioned that CPAP therapy often isn't effective for folks with mild sleep apnea (like myself). I haven't found much info to backup that statement. Anyone else being told this by their physician?

My apnea is mild, but CPAP has been extremely effective. I've heard this mentioned, but figured it was from someone without personal experience. The doctors/researchers may be asking the wrong questions or they may be ignoring actual results. It's kind of logical, to think the greatest benefit will got to those with the greatest problem, but in real life it doesn't work out that way.

My doctor is a big name researcher but I do not think he hears what I say, if it isn't what he already believes. A lot of learning is still happening, it's a new area of research. Theory and practice are not yet thoroughly integrated.