[Treatment] Questioning my Doctor's Attitude

[nunanie]

I was diagnosed after surgery last summer with Severe Sleep Apnea with an AHI of 33.1 and was started at a pressure of 7.0 After a lot of juggling with the pressures I am now at 11.0 and feeling like I want to live again - sometimes.

... but here's my question.

I have many nights (50 to 60% of nights in a month) where the AHI will remain over 10 and stay there for up to 2 to 2 1/2 hours during sleep, but because these are all averaged out over the night, the average AHI is generally 3 and under - there are occasional nights where the average is 6 or 7 - maybe 2 or 3 x's a month.

I questioned my doctor on this on my last appointment. He just smiled and said "oh you're the one that watches the numbers !!" and then "that's fine, nothing to worry about". He told me that he wasn't concerned because "it's all based on how I feel. "

So then I told him that I can have as many as 15 to 20 and sometimes as many as 40 apnea episodes during the night (I use Sleepyhead so it's easy to count the Central's, Hypoxia's and the Obstructive's). The length of the episodes are generally between 15 and 20 seconds but often they are in the high 20's and I've seen up to 40-50 seconds of apnea's.

Centrals seem to rule the night - but I was told that by raising my pressure to 11. that *I* have created them. (Long story - I fell through the cracks with this clinic from the start, so between the Resp Tech and a VPAP study I had in August that showed an average pressure of 12.3, I gradually increased the pressure to 11 and I finally felt like I had actually had a decent sleep again - I had been feeling as if I was smothering, wake up choking etc. I was getting no response from the sleep clinic to concerns, and no help from the cpap provider I was assigned to so I was forced to manage on my own.

I mentioned these AHI stat's to the doctor in January (first visit since I had had the sleep study in June (pretty poor health care, don't you agree?) and he said "It doesn't matter, it's all based on how you feel"

I asked my Family Doctor for a second opinion from another sleep clinic but was told they wouldn't see me without another sleep study and that I would have to pay for it. I have since found out that this second doctor cannot refuse me a consult so I might push for that.

So my questions to you are:

Are these high AHI periods through the night "normal" and something I shouldn't be concerned about?

Are apnea periods 15 to 25 and occasionally 45 to 50 seconds "normal" and I'm over reacting?

I know when I've had a rough night, I wake up tired and stay tired all day not feeling at all rested, my brain is "foggy" (only way I can describe it). I also find that I'm coughing a lot. I have the humidity at 5.5% (it's worse at a lower humidity) and with a heated hose now set at 81F - that doesn't seem to be a concern either. ("It's just the dry winter weather")

I can't seem to get answers from this doctor - not very impressed with his general disinterest in my concerns. Any comments? Anyone else who has experienced these things? or am I just being paranoid.

Any comments will help me to not feel I'm alone in this struggle.

[justMongo]

I have clusters of apnea events during the night. You'll find a similar attitude among many sleep physicians...

[Peter_C]

Hello and welcome. Many others will also show up in the next few hours. I will first say that not all sleep docs are created equal. As in many issues, some are better than others. Many will see you without a new sleep study if you will get them the records from the first one. That said, most of us believe that no one will care about your health as much as you, yourself.

My OSA was very bad (well, still is, but controlled) - and an AHI of 10 or less is a win in my book. I have also added a recording Oximeter, so I can see how badly I am desating at night. I am pleased when I can keep it to 10 minutes or less under 88% (most all people bounce around 90-94% at night, it's the time under 88% that can be bad. I do not get headaches in the morning any longer, which is a plus.

Your nights will vary. So the key is to look at 'averages', weekly, or monthly - never just one night to the next. Stress, when you last ate, any booze, your meds, all these things will change your AHI. It will bounce.

The key is to see what is 'normal' for you (over many weeks/months), and then see what, if anything you can do to improve it at all - sometimes it is what it is, and that's as good as it'll get - but you won't know if you don't try.

The key areas to watch are leak rate!!! And AHI. A high (or higher) leak rate will skew the numbers all over the place. Yes, raising pressure *can* cause centrals - but in that case they will usually go down with time - as your body gets used to the pressure.

Welcome~! There is a lot of great info all over the place here, try the new cherry kool-aid, very tasty

[Peter_C]

I have clusters of apnea events during the night. You'll find a similar attitude among many sleep physicians...

That is so me too - I tend to only focus on the clusters personally...

[zonk]

Centrals seem to rule the night - but I was told that by raising my pressure to 11. that *I* have created them.

HI nunanie
If raising the pressure is the cause of central apnea than why not lowering it or even raising it in the first place
Sometimes there is trade off, pressure high enough to deal with obstructive apnea and low enough not causing central apnea, its a bit tricky to accomplish with fixed pressure machine. For this reason, I like my autoset, the autoset raise pressure in response to flow limitation (which proceed obstructive apnea, not central apnea) and obstructive apnea but does not raise pressure if central apnea detected ... best of both world providing the set pressures are optimal

[trish6hundred]

Hi nunanie,
WELCOME! to the forum.!
I echo what has been said so far.
Best of luck to you and hang in there for more suggestions.

[robysue]

I have many nights (50 to 60% of nights in a month) where the AHI will remain over 10 and stay there for up to 2 to 2 1/2 hours during sleep, but because these are all averaged out over the night, the average AHI is generally 3 and under - there are occasional nights where the average is 6 or 7 - maybe 2 or 3 x's a month.

I questioned my doctor on this on my last appointment. He just smiled and said "oh you're the one that watches the numbers !!" and then "that's fine, nothing to worry about". He told me that he wasn't concerned because "it's all based on how I feel. "

As a patient, I would encourage you to start thinking about efficacy of your therapy as being a combination of how you feel and the numbers from the machine. I say that coming from the other end of things: Good to great numbers, but not really feeling much better on PAP than pre-PAP (and that's after 3 1/2 years of PAPing.)

As for how important the clusters are: It really depends. If some or all of those clusters are during times when you're awake or going back and forth between wake and light sleep, they may mean nothing, and they might not even be scored during an in-lab sleep test. But if you're sound asleep and if you feel lousy on a day after a really bad cluster, then something might indeed need to be tweaked.

So then I told him that I can have as many as 15 to 20 and sometimes as many as 40 apnea episodes during the night (I use Sleepyhead so it's easy to count the Central's, Hypoxia's and the Obstructive's). The length of the episodes are generally between 15 and 20 seconds but often they are in the high 20's and I've seen up to 40-50 seconds of apnea's.
...
...
Are these high AHI periods through the night "normal" and something I shouldn't be concerned about?

Are apnea periods 15 to 25 and occasionally 45 to 50 seconds "normal" and I'm over reacting?

15-20 machine scored events during eight hours of sleep is NOT unusual for a PAPer, and that many events is NOT a real concern unless you're having really bad clusters night after night during times when you know (for sure) that you were asleep. In which case, it might just be REM-related or supine sleep related.

And it's also important to not get overly worried about the random really bad night. While 40 events is a lot of events, if you're using the machine for 8 hours, that works out to an AHI = 5.0, and if that's only happening once or twice a month and you don't feel much different after a random "bad night", it's not worth losing sleep over ...

Centrals seem to rule the night - but I was told that by raising my pressure to 11. that *I* have created them. (Long story - I fell through the cracks with this clinic from the start, so between the Resp Tech and a VPAP study I had in August that showed an average pressure of 12.3, I gradually increased the pressure to 11 and I finally felt like I had actually had a decent sleep again - I had been feeling as if I was smothering, wake up choking etc. I was getting no response from the sleep clinic to concerns, and no help from the cpap provider I was assigned to so I was forced to manage on my own.

First, it's a shame that you've been allowed to fall through the cracks by the clinic.

That said, however, you likely HAVE created the problem with centrals by increasing the pressure up to 11cm. Approximately 15% of PAPers are seriously sensitive enough to positive airway pressure for them to develop pressure induced centrals once the pressure is increased past their personal "pressure threshold."

Since the problem seems to be with centrals, you need to figure out how to balance "enough pressure to prevent (most) of the obstructive events" and "not enough pressure to trigger an excessive number of central events."

Since you're basically being forced into managing things on your own, this is what I'd recommend as another PAP patient: Try lowering your pressure to 10cm and leave it there for a week or so. Then compare the whole week's worth of data to a typical week's worth of data at 11cm: Did the overall AHI go up or down? Did the number of CAs go down? Did the number of OAs and Hs go up? Were there more or fewer clusters of events?

If the overall AHI goes down because of a big decrease in CAs and in spite of a modest increase in OAs and Hs, then you might just be much better off with the lower pressure setting.

I know when I've had a rough night, I wake up tired and stay tired all day not feeling at all rested, my brain is "foggy" (only way I can describe it). I also find that I'm coughing a lot. I have the humidity at 5.5% (it's worse at a lower humidity) and with a heated hose now set at 81F - that doesn't seem to be a concern either. ("It's just the dry winter weather")

For now, I'd recommend tracking things in a simple log. Track a few of the daytime variables that indicate how well you are feeling on a simple 0-5 scale (0=not a problem, 5=an intense problem). Track the AHI, but also track how much sleep time you think you got during the night and how many wakes you remember in the morning. After a few weeks, some patterns may emerge that will indicate whether a "rough night for AHI" or a "rough night for sleep continuity" is the more significant factor in how you're feeling.

Also see your PCP for the cough if it's been hanging around for more than a week or two. Upper respiratory infections (both viral and bacterial) can lead to a (temporary) worsening of the AHI and the quality of your sleep.

If you think the cough is PAP related, you may want to bump that humidity setting up from 5.5 to 6 or 6.5 (or higher). You may also find that a lower (or higher) temp in the hose might make the cough a bit better or worse. So it's worth playing around with the temp setting too.

[me50]

A lot of what your doc said is accurate. Some docs don't have a good bedside manner and sometimes because we are not feeling like we should feel or we are concerned about things that seem very crucial to us, a doc that treats OSA often is immune to our concerns and see it as a needless worry. What they forget about (not all of them and some are really bad where they don't listen at all), is that we are not doctors and we are new to this and there is a lot we don't understand yet, a lot to learn and take in and we all know that most DME's are pretty useless once they sell the machine, and all it takes is someone to explain things to us so we don't get overly concerned unnecessarily. I got a pretty good handle on my CPAP Auto but as hard as I have tried to get my RT to explain things, my answers have pretty much been opinion based and I haven't learned anything from them. And, I hate to admit it, but right now, I don't have the time to delve into the mechanics of VPAP Auto. I hope that we can get the 2 crucial issues through the court system in the next 2 months and things will be easier for us then, at least in some respects.

[zonk]

I don,t know if you,re using EPR, some people get helped by it and some don,t
Lower it or turn off and see what happen ... nothing ventured, nothing gained

[Sleepster]

Centrals seem to rule the night - but I was told that by raising my pressure to 11. that *I* have created them. [...]
- I had been feeling as if I was smothering, wake up choking etc.

If the largest part of your AHI is your CA index, and you weren't diagnosed with central or mixed apnea, then I would agree that you raising your pressure is at least part of the problem.

Waking up and feeling smothered is not caused by the CPAP pressure being too low, and it's not a valid reason for raising the pressure.

My advice is that you set the pressure back where it was, leave it alone for three weeks, and then look at both the data and consider how you feel.