AHI is OK, but feel much worse. Lots of centrals. ***update

[Delta4]

I've been on CPAP for 3 months. After my first 4 nights on the CPAP, I started feeling much worse than I did before the CPAP (even more debilitating fatigue and brain fog than before CPAP.) I use the CPAP every time I'm asleep (9-15 hours per day) and my leak rates are very low.

Unfortunately my doctor (neurologist board certified in sleep medicine) only seems to care about the monthly AHI and not individual nights. I monitor my data with ResScan and Sleepyhead. 90% of my events are central apneas and only 3% are obstructive. I have 4-5 bad nights each week (50-80 central events with a AHI of 4.5 - 8.) On my better nights, my AHI is less than 1. That leaves me with a monthly AHI of around 3.

I've left messages with my doctor describing how I feel and asking if I need a different setting or type of machine. Unfortunately, my sleep doctor keeps responding that the CPAP is working great because the monthly AHI is less than 5.

I sent detailed data for several bad nights to my doctor and I'm waiting for a response.

I don't understand why my doctor discounts how I feel and just goes by the average monthly AHI. Do other people have this problem with their doctors? I think my doctor would change something if she paid attention to my bad nights. Then maybe I'd have more good nights than bad nights and would end up feeling better.

Any advice? Thanks!

[ironhands]

If you're sleeping 15 hours a day, you need another PSG, your neurologist should know that it's highly atypical. 4-5 bad nights a week mean that the majority of your sleep is still poor. If it were 1 or 2, sure, but there's likely a secondary issue going on that's presenting itself now that the OSA is resolved.

Clearly, the CPAP is NOT working great for your sleep issues. It's working great for the OSA, but there's something else going on there.

Do you ever feel suddenly weak when you're surprised, laugh, scared, ect? Do you feel like you're spending most of the night dreaming?

[Julie]

Unfortunately most doctors ('sleep' or otherwise) know next to nothing about equipment or the details of therapy and leave it in the hands of DME's, as long as they can also satisfy demands of the insurance co's. Forget finding much help there - unlikely to happen at all. However there is a lot of help here from experienced and knowledgable people, so you have found a good place to visit.

So often the problems arise due to badly fitted masks either just wrong for you, wrongly sized and with no help given re fitting. As well, if you mouth breathe when sleeping (so many do once on Cpap... the pressure, etc.) then you're losing all the therapy air that way and full face masks need to be considered, as chin straps are limited by allowing lips to open, if not jaws.

What pressure settings does your machine use? If they're inadequate they need reajusting and we can help you with that as well. And if you're seeing some centrals just on falling asleep or awakening, that's normal... what's not is having lots, in clusters or otherwise, throughout the night, so can you clarify a bit more?

See you soon...

[igdoc]

As Julie says, a certain number of central events (up to 5 an hour) are normal such as those that occur when between awake and asleep. However it does sound like you are having excess central events on your bad nights. One cause for this can be low carbon dioxide levels caused by relative hyperventilation on CPAP. Sometimes this can be alleviated by a reduction in pressure but, more effective, is a reduction in the exhalation relief settings (EPR).

I am not sure if this is enough to cause you to feel worse on CPAP but low CO2 levels can cause a reduction in blood flow to the brain! It would certainly be worth checking other things like your thyroid levels with your Doctor if you have not already had these done.

Can you tell us your pressures and EPR levels as tweaking these may make a difference as to how you feel.
Ian

[Bill44133]

If the doctor is not listen or helping you then it is time to find a replacement. I would not stand for a doctor to ignore
my request for help. My money and my insurance is good else where.

I wish you good luck!

[JohnBFisher]

I agree that another doctor might be in order. If you want to try to get through to your current doctor, then ask if it's okay to have half a fatal accident per month. No seriously. A doctor that only relies on the MONTHLY average ignores that allows a significant swing during that month. The point of the question is that one fatal accident per month is one too many. It might not average out to a lot over a single month, but who cares?! One is too many.

[Wulfman...]

I've been on CPAP for 3 months. After my first 4 nights on the CPAP, I started feeling much worse than I did before the CPAP (even more debilitating fatigue and brain fog than before CPAP.) I use the CPAP every time I'm asleep (9-15 hours per day) and my leak rates are very low.

Unfortunately my doctor (neurologist board certified in sleep medicine) only seems to care about the monthly AHI and not individual nights. I monitor my data with ResScan and Sleepyhead. 90% of my events are central apneas and only 3% are obstructive. I have 4-5 bad nights each week (50-80 central events with a AHI of 4.5 - 8.) On my better nights, my AHI is less than 1. That leaves me with a monthly AHI of around 3.

I've left messages with my doctor describing how I feel and asking if I need a different setting or type of machine. Unfortunately, my sleep doctor keeps responding that the CPAP is working great because the monthly AHI is less than 5.

I sent detailed data for several bad nights to my doctor and I'm waiting for a response.

I don't understand why my doctor discounts how I feel and just goes by the average monthly AHI. Do other people have this problem with their doctors? I think my doctor would change something if she paid attention to my bad nights. Then maybe I'd have more good nights than bad nights and would end up feeling better.

Any advice? Thanks!

Do you have a copy of your sleep study? If not, you need to get it to see what it shows with regard to Centrals.

Your profile shows that you're using a straight pressure of 12 cm. Is that correct? Maybe you need to try a slightly lower pressure. In the old ResMed APAP machines, they used the "A10" algorithm which prevented the pressure going beyond 10 cm. if apneas were detected without preceding events. That was supposed to help prevent Central Apneas because their studies indicated that Centrals were more prevalent above the pressure of 10 cm. That's why I was wondering about a slightly lower pressure to see if the Centrals are reduced.

What EPR setting are you using? It's possible that could make a difference, too. If you're using a setting of 3, you might try a lower setting or turning it off entirely.


Den

.

[Delta4]

Thanks for your replies.

Does anybody know if most insurance companies require another sleep study before they'll cover a bipap or ASV? I have Blue Cross. I don't mind having another sleep study, but with my luck, I'd have it on one of the nights where I have few events. I haven't been able to identify any triggers or trends.

I'll answer some of your questions. I think my mask fits fine. Leaks are rare. I sometimes use a Quattro FX FFM and have the same results so I don't think mouth breathing is a problem.

My pressure is 12. I think my EPR is 3. Now that I've used it as prescribed for 3 months, maybe I'll try autoset. Any suggestions on what range to try?

I don't have the main symptoms of narcolepsy. I rarely remember dreams.

I bought a pulse oximeter after one month on cpap and used it every night for a month. My oxygen readings dip and pulse goes up a lot throughout most nights, sometimes to concerning levels. Based on my results, I begged my doctor to order a pulse-oximeter test and of course the night I used it night was a good night and I had few events. She didn't want to see my own data.

On my bad nights, I have clusters of centrals 1-5 hours after I go to bed. By clusters, I mean I might have 20 events in a 30 minute period. Or 45 events in an hour. Unfortunately my averages get diluted because I sleep so long. I also wake up gasping for air during many of my bad nights. I have a headache after waking up most of the time which was rare before. All this screams to me that we need to try a different machine!

I had my thyroid levels checked in December.

I agree that I need a new sleep doctor. Mine just cares about the monthly average AHI and Ignores the fact that i feel so much worse. I'm so frustrated and can't continue to feel this bad everyday!

[igdoc]

Suggest you don't use autoset. Your machine will try and distinguish between obstructive and central events but will not be 100% accurate and some central events will be misinterpreted as obstructive. The result will be a bump up in pressure which is the opposite of what you need for central events. As Wulfman and I have suggested you may need to lower your pressure but the first thing I would try is reducing your EPR from 3 to as low as is comfortable as this will have the greatest effect on your central events.
Let us know how you get on. Best wishes.
Ian

[MitzyG]

First...get a new doctor. I was pleasantly surprised when I got a new one and she was a 180 degree diff from the first one. She actually sounds like she knows what she's talking about and had constructive advice regarding my machine settings based on the readings, the sleep study and how I was feeling. Funny, she told me that we should look at some of the medications I've been taking because it might also contribute to the sleepiness and now that I have treated the OSA, I may no longer need the medicine anyway! I was scared because I had tried to stop taking it before (this was before getting CPAP). But today I forgot to take it, didn't have time to run to the house and I was actually feeling GREAT all day vs getting sleepy while driving! I'm starting to believe she was right. I have a good feeling about her.

Second...I wasn't feeling good when I had EPR of 3. I had been using a Philips Respironics as a loaner until they could get my S9 Autoset. When I got the autoset and set it to the same settings and with EPR of 3, I felt crappy. I ultimately turned off EPR and I am just as comfortable, but I feel better. EPR will reduce the pressure for the exhale and I don't know whether it could have an impact on the inhale (clearly, it's not supposed to...but...) So 3 means it'll reduce it by 3.0cm. I slowly changed from 3 to 1 to 0 and was never uncomfortable so I left it at 0.

I use the auto because in my sleep test, I was "mild" until I went into REM sleep when it became severe. So I need the additional pressure only when I'm in REM. When it was constant, I was very miserable.

Regarding the centrals...during my sleep tests in the lab, I had 0 centrals. I suddenly had "centrals" when I read the Sleepyhead data. I am thinking that these really are leaks or something, not necessarily true central apnea. I have more centrals when I have more leaks and fewer centrals when I have fewer leaks. Leading me to believe these are not true clinical "central apneas". So I've been doing mask changes, padding adjustments etc to reduce the leaks and that has helped.

[DoriC]

Suggest you don't use autoset. Your machine will try and distinguish between obstructive and central events but will not be 100% accurate and some central events will be misinterpreted as obstructive. The result will be a bump up in pressure which is the opposite of what you need for central events. As Wulfman and I have suggested you may need to lower your pressure but the first thing I would try is reducing your EPR from 3 to as low as is comfortable as this will have the greatest effect on your central events.
Let us know how you get on. Best wishes.
Ian

Can you explain the connection between EPR and Centrals?

[startanew]

A quick question...Have a Remstar Auto AFLEX machine. Is the EPR setting the same as the Flex setting? Or is it something completely different?

[Delta4]

Can you explain the connection between EPR and Centrals?

I'm also curious about the connection between EPR and centrals. But I went ahead and lowered my EPR from 3 to 2 for tonight,

I really appreciate everyone's suggestions and agreement that I'm not crazy for believing that more attention should be paid to how I feel rather than my monthly average AHI.

[Pugsy]

A quick question...Have a Remstar Auto AFLEX machine. Is the EPR setting the same as the Flex setting? Or is it something completely different?

The only thing they have in common is that they are both forms of exhale relief.
AFlex at 3 isn't the same relief as EPR at 3.

viewtopic.php?f=1&t=88991&hilit=+CPAP+Basics+re%3A

[letsride]

If you can't find a doctor that is truly interested in your health you may have to travel on your own to figure out which machine fixes the apnea events.
Most doctors follow medicare requirements which may not cover what you need for your health.

Stay with it until you find the Doctor or machine that solves the problem.
As you know a low AHI doesn't mean anything unless you feel great the next day!

The averaging of numbers never works for feeling good 99% of the time.