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Newly diagnosed - very severe OSA - everything working as should but feel same as before?

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DeedeeB +0 points · about 4 years ago Original Poster

Just wondering if anyone else has had same issues - I was diagnosed with very severe OSA - over 100 events an hour (no wonder why I was exhausted, unable to concentrate, weight gain and felt like a zombie)... I now have had over 3 weeks with my CPAP (DreamWear Nasal Mask - Philips Dream Station) and everything has read darn near perfect - mask fit always 100% with no leaks (even though it irritates me, but I can't stand anything touching my face) - AHI under 5 every night ... but I'm still miserable ... I wake up, can't get back to sleep, and still hit my snooze .. want a nap .. concentration is a bit better ... but you would think going from 734 episodes to 5, I should feel like a million bucks? I did the 'at home' test to save money (high deductible insurance), but maybe need to sleep in lab? Any feedback would be appreciated. Thank you!

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Cpapian +0 points · about 4 years ago

Actually, you are comparing a dozen oranges to one. An AHI of 5 is an average per hour. So during an 8 hour sleep, you would have had 40 apnea events. Fourty apnea events in a night, would likely prevent your sleep from cycling through the various sleep stages, such as REM, deep, etc. Without cycling through the various sleep stages, I doubt you would wake up feeling refreshed.

I wouldn't be happy with an AHI of 5. Last night my AHI was 2.3 and that was my worst night in quite a while.

There are several things you can do to follow your treatment to optimize. There is a free software called Sleepyhead that has been developed. It allows you to see each and every breath during a nights sleep. It also gives you charts and statistics, a breakdown of your events, when they happened. It will show you if you have flow limitations, if you are reaching your maximum and need higher pressure. It will tell you if you had leaks and when and the list goes on. Pretty neat stuff.

There are other steps to take to feeling better, but knowing your treatment is effective and lowering your AHI to it's best is a good place to start.

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DeedeeB +0 points · about 4 years ago Original Poster

Thanks for responding - I think I misspoke about my AHI - I said under 5 as generic...some nights it's .7, some nights it's around 2 - but always under 5 (worst 4.2). Is Sleepyhead different than DreamMapper? That is what I have that shows me my AHI, Mask Leak, and the levels of pressure used .. ex, last night AHI .7, Mask Fit 100%, 90% Pressure 12.5cmH20 (my ramp is set from 5 -20) I am 3 weeks in, and don't see pulmonologist for another month - so wanted to see if I should move up the appt or just be more patient - I'll just keep plugging along ... Thanks again!

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snuzyQ +0 points · about 4 years ago Sleep Commentator

It's common, when new to CPAP, to wake often in the night, then have trouble getting back to sleep. Even though your AHI now is so much improved over your untreated AHI, these nightly "awakenings" are fragmenting your sleep and it is for this reason that you aren't feeling any better yet. It takes time, persistence and patience to adapt to CPAP. A few fortunate folks breeze right through this acquaintance phase and adapt within a night or two. For most of us though, our acclimatization to CPAP takes anywhere from 2 weeks to 6 months. So, it's very hard to predict when we will feel better when we first start using CPAP.

Our brains deeply resent the change from our old and familiar way of sleeping (the norm). However, the amazing thing about our brains is, any new stimuli, when repeated persistently over time, eventually becomes perceived as the new norm and the little things (they might not seem so little) that annoy us at first about our treatment become accepted and expected. We start to think less and less about the annoyances until they fade into the background and are finally not noticed at all. This is the adaptation process. After awhile, our brains start associating our treatment with "relaxation" and "sleep". From then on, our brains look forward to our new way of sleeping each night and we're home free - fully adapted and CPAPPERS for life, just as we need to be. It's simply the way we sleep. We can't even imagine sleeping any other way. It feels good.

Our adjustment to CPAP happens faster when we persistently mask up and turn on our machines every time we are sleeping.

Congratulations on your great sleep data. Your CPAP therapy is really helping you out every night. There is no need right now for further sleep testing. Keep on posting as things crop up. We can troubleshoot ways to make your therapy more comfortable.

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DeedeeB +0 points · about 4 years ago Original Poster

Thank you for responding - greatly appreciate you taking the time - I look forward to start feeling the true benefits! I have used it every night to ensure I am taking care of my sleep health, no matter the struggle sometimes lol...

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Sierra +0 points · about 4 years ago Sleep Patron

It does take some time to get comfortable with your mask, and relax so you can get a good sleep. I have been at it for 5 months now, and am just starting to feel comfortable with one mask. I gave up on four other masks I tried. So time helps.

If you want to dig deeper it would be really helpful to download SleepyHead so you can see in detail what is happening during the night. You will find out how much your pressure is going up and down, and when exactly you are having your apnea events, and be able to compare that to when you wake up. The Dreamstation machine in particular likes to ratchet up pressure quickly and back down quickly. That can be annoying to some people, and may wake them up. And while pressure is down, you can have apnea events which are not helpful either.

An AHI of 5 is OK and considered the minimum treatment goal. It would be helpful to know what the breakdown of your AHI is. If it is mainly central apnea events, then reducing AHI is difficult as CPAP pressure doesn't stop central apnea and an AHI of 5 may be the best you can do. If it is mainly obstructive apnea and hypopnea then a well adjusted CPAP should bring events down closer to 1.0.

In short, you kind of have to dive into the detail to find out what may be causing you to wake up. You might find some of the tips at this website helpful in getting a good sleep.

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DeedeeB +0 points · about 4 years ago Original Poster

Thank you for responding .. I think I misspoke about my AHI - I said under 5 as generic...some nights it's .7, some nights it's around 2 - but always under 5 (worst 4.2). I asked another responder if Sleepyhead different than DreamMapper? That is what I have that shows me my AHI, Mask Leak, and the levels of pressure used .. ex, last night AHI .7, Mask Fit 100%, 90% Pressure 12.5cmH20 (my ramp is set from 5 -20, in 20 minutes) I will be patient and keep plugging along ... Thanks again!

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Sierra +0 points · about 4 years ago Sleep Patron

I am not all that familiar with DreamMapper, but I think it is just giving you summary data. SleepyHead does that too, but the real value is the minute by minute graphical plots of a number of variables during the whole sleep session. These are displayed with the Daily Detail chart. See this example for a Dreamstation, which is actually a BiPAP machine, but an Auto CPAP will be quite similar. Notice the red pressure trace and see how the DreamStation keep peaking it up during the night and back down again. The results this individual is getting are quite good, but they potentially could be improved with some pressure adjustments to reduce the pressure variation during the night. It also looks like hypopnea events are primarily occurring when the pressure is lower. In any case this is the kind of detail you can see with SleepyHead. It can be very helpful in determining what may be causing your arousal events, and what adjustments could be made to reduce them.

DreamStation SleepyHead Screen Shot

Your pressure range of 5 cm to 20 cm is very wide, but not unusual for an initial guess for setup. Most will find that 5 cm is too low and when you start there each night, some feel short of air, or a claustraphobic feeling. More often 7-9 cm is a better start point. And narrowing up the minimum and maximum pressures can make the experience more comfortable, and at the same time improve AHI.

SleepyHead will run on Windows or Apple, and all you need to do is remove your SD card from you machine and plug it into a card reader to get the data into SleepyHead. Not all that hard. Your sleep provider or doctor should have software from Phillips similar to this, and can view the data as well. However, what they can do, and what they actually do are often different things...

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figuringitoutmyself +0 points · about 4 years ago

Hi I'm new to the forum. People with sleep apnea can really benefit from allergy shots to clear up sinus and throat congestion. Also seeing a snore and sinus doctor can help too. I have suffered with sleep apnea since I was a teen. I have helped myself find answers more than sleep studies and sleep specialist have. After many ENT's etc I went to a Snore and Sinus doctor who was the first to take a CT scan of my sinus cavity. He reported to my that I had a deviated septum and very large turbinates along with a thick toung and very narrow throat due to large tonsils. Therefore my CPAP was not helping me even at a high pressure, no where for the air to go 😔 I had my deviated septum fixed and turbinates removed. Now my passages way is wide open. What helps me with my mouth dropping at night while sleeping is breathable tape 😊 Placing it over closed lips provents dry mouth/throat which caused me to cough all night. Also eliminate "chipmunk" cheeks☺️ and leaks. I started with a full mask, now I can use a nose mask since I don't need air pressure in my mouth. I have no leaks and it much more comfortable, feels like a have nothing on my face. 1: allergy shots if you suffer from congestion. 2: CT scan of sinuses to check for blockages. 3: Breathable Tape. 4: Test different mask. (I went through 4 types to find the best for me) Hope this helps. Sincerely.

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SleepDent +0 points · about 4 years ago Sleep Commentator

I am a dentist working in dental sleep medicine. Patients need to understand that severe sleep apnea causes many negative changes in the body over time. Fortunately, successful treatment of obstructive sleep apnea does allow the body to eventually repair the damage, but it takes time to do so. The sequence is: 1. Damage gets repaired. 2. Patient begins to feel better. That means that it could take one, two, three, four, five, six or more months to get the payoff in feeling better. So, be patient, stick with your treatment, make sure your health professionals have optimized your treatment, wait for the payoff. Good luck to you! Arthur B. Luisi, Jr., D.M.D.

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