Advice please on therapy...anything else to change?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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donewithbeingtired
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Advice please on therapy...anything else to change?

Post by donewithbeingtired » Wed Mar 04, 2015 11:53 am

Hi All - I have been making progress but am still not getting the results I want. Have been through pressure settings (straight and APAP), a few masks, looking at the data, sleep hygiene, etc. Have settled in on a Wisp mask and a straight pressure, small piece of tape and some ear plugs. Have worked up to ~7 hours a night and I am not being woken up by the mask, machine, etc. Charts are pretty consistent with an AHI between 1 and 2, with the events distributed pretty evenly over the night. 2 examples below, one with 9cm and one with 9.5.

Its been about 3 weeks of playing with the setup and now about 4 weeks of results like in the charts. I still don't feel any different. Is there anything else I should try to improve the therapy at this point, or do I just keep at it "as-is" and wait for things to change? I have read the posts about some people take a week, others a year, etc.

Just want to be sure I am not missing something.

Thanks, T

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SGearhart
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Re: Advice please on therapy...anything else to change?

Post by SGearhart » Wed Mar 04, 2015 12:19 pm

Based off the OA's and Hypopneas, I would look at increasing your pressure. This is just a wild guess but I would consider setting the pressure to about 10cm. You might initially get some CA's but the body should adjust to the higher pressure after several sessions. You're quickly learning that a low AHI doesn't mean jack if you don't feel rested. I'm firmly convinced that after a certain point of manipulating the CPAP mechanics, that it becomes more of an art form to achieve a restful sleep.

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Re: Advice please on therapy...anything else to change?

Post by Pugsy » Wed Mar 04, 2015 12:28 pm

You look good on paper. I don't see anything that is screaming "fix me".
What unwanted symptoms are you still having that you wish you didn't? "don't feel any different" doesn't really tell us much.
Do you take any meds of any kind? If so, what?
Do you have any other health conditions that might impact how you feel?
Pain? Arthritis?

You may have already answered those questions in another thread but I am short on time at the moment so don't have time to go back and reread your old threads.

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donewithbeingtired
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Re: Advice please on therapy...anything else to change?

Post by donewithbeingtired » Wed Mar 04, 2015 12:38 pm

I am a fit,active, otherwise healthy 44 year old guy. Eat well, don't get sick very often, lots of exercise, etc.

I am just tired all the time and have this spaced out, jet-lagged feeling. Like you just got back from a 5 day work trip to Asia where you left on Monday, flew 15 hours, saw 9 customers in 3 days in 3 cities, then flew 15 hours back and were home on Friday, standing at your kid's baseball game on Saturday morning trying to not yawn. I used to do this kind of thing a few times a year before I got diagnosed with OSA, and I think its the best comparison to how I feel now. It just doesn't go away.
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Re: Advice please on therapy...anything else to change?

Post by Pugsy » Wed Mar 04, 2015 12:41 pm

How many nights are you getting now with 7 or more hours of sleep?
I know in the past you were taking the mask off prematurely or waking up sooner than you preferred.

What was your AHI pre cpap therapy?

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Re: Advice please on therapy...anything else to change?

Post by chunkyfrog » Wed Mar 04, 2015 12:45 pm

No doubt cpap is helping, but you may not be feeling it yet.
Another thing: not every problem is linked to apnea.
((Give a toddler a mallet and he will hit everything with it!))
If you have not had full bloodwork, get it done.

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donewithbeingtired
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Re: Advice please on therapy...anything else to change?

Post by donewithbeingtired » Wed Mar 04, 2015 12:50 pm

I am up to ~7 hours now each night, its been about a week of that. The mask stays on the entire time and its doesn't bother me anymore. If I do wake up briefly to turn over then I wonder if the machine is even on.

Regarding blood work, I had a bunch done by my primary care doc 2 years ago when all this started. All looked OK. Do you have suggestions on what things they should look at? I think it was pretty comprehensive.
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Re: Advice please on therapy...anything else to change?

Post by Pugsy » Wed Mar 04, 2015 12:55 pm

donewithbeingtired wrote:Regarding blood work, I had a bunch done by my primary care doc 2 years ago when all this started. All looked OK. Do you have suggestions on what things they should look at? I think it was pretty comprehensive.
Vitamin D level and testosterone level (since you are a guy) as these aren't commonly included in the standard blood testing.
Thyroid function testing is normally included but you might verify to make sure it was done.

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Re: Advice please on therapy...anything else to change?

Post by Guest1 » Wed Mar 04, 2015 6:25 pm

Your AHI is under control. Anytime its less than 3 consistently, you should look at other culprits.

1) Change in pressures by APAP: Looks like you have that covered by going to a straight pressure of CPAP.
2) Leak rates compromising your therapy. Looks like you are not in large leak territory so should be fine. If you are not using nasal pillows, I suggest you go to a nasal Pillow mask (preferably P10). Nasal Pillows leak the least.
3) Breathing Adjustments: Your body may be still adjusting to the new normal of CPAP. Your minute ventilation, your respiratory rate and your I:E ratio are all getting reconfigured right now.
4) Your hormones are getting reconfigured right now.

You need to give it time. 4 weeks is not enough. Don't rush it. Give your body time to adjust. Once your AHI is under control (as it is less than 2 in your 2 charts), there is diminishing returns in dialing the pressure to chase out that last bit of AHI.

If CPAP can't keep your spo2 levels up for some reason, you may want to go the BiPAP route. You may also try Aflex at any level. This will help blowing off Co2. But its something to be considered after another 5-10 weeks. You can also use an overnight pulse ox to record your Spo2. But I think its an unlikely scenario in your situation.

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Re: Advice please on therapy...anything else to change?

Post by archangle » Wed Mar 04, 2015 7:16 pm

Sometimes it takes a while to feel the results.

Why are you on manual instead of auto pressure? You might try setting the machine to APAP mode and see where it "wants" to set your pressure. If pressure changes bother you, you might want to start with something like 9.5 - 10.5 and then increase the max pressure a bit more gradually.

Some people find they feel better if they raise the minimum pressure as well. Sometimes the CPAP just doesn't find the right pressure for things like flow limitation, UARS, and RERA.

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Re: Advice please on therapy...anything else to change?

Post by robysue » Wed Mar 04, 2015 9:19 pm

donewithbeingtired wrote: I am just tired all the time and have this spaced out, jet-lagged feeling. Like you just got back from a 5 day work trip to Asia where you left on Monday, flew 15 hours, saw 9 customers in 3 days in 3 cities, then flew 15 hours back and were home on Friday, standing at your kid's baseball game on Saturday morning trying to not yawn. I used to do this kind of thing a few times a year before I got diagnosed with OSA, and I think its the best comparison to how I feel now. It just doesn't go away.
This sounds a lot like I felt when I first started PAP back in 2010. Pre-CPAP I was not particularly sleepy during the daytime, and as soon as I started PAP, I crashed and burned and felt exhausted beyond all exhaustion day after day after day after day. It was really discouraging. But with a lot of help from the folks around here and my dear hubby, I persevered through the worst of it.

But at least you're sleeping about 7 hours a night and only waking up once or twice. (I wasn't.)

As much as you don't want to hear it, sometimes it just takes time. And for some of us, it takes a lot more time than expected.

I eventually started to feel just a wee bit better about 6 months after starting PAP therapy. And the first signs that PAP was doing me some good were really subtle and unexpected. By the time I was 9 months into my therapy, it was clear that PAP was doing some good and I was slowly starting to feel better than I had pre-CPAP (in terms of pain issues) and I'd finally gotten back to feeling as not sleepy, alert, and cognitively all there as I had before starting PAP. I still wasn't sleeping as long as I wanted to. (Heck, I'm still not sleeping as long as I should.) But the longer I kept using the dang machine, the better I felt.

In my case I have a pet hypothesis about why I felt so utterly exhausted and sleepy during the daytime only *after* starting CPAP: I strongly suspect that pre-cpap I was running on adrenaline and cortisol produced during the nightly "flight-or-fight" episodes triggered by the 20+ hyponeas per hour of sleep. Once CPAP took care of the apnea, my body wasn't producing all those stress related hormones, and I think that triggered the daytime exhaustion and sleepiness. It simply took my body a very long time to come to grips with the new situation of not being flooded with those flight-or-fight hormones each and every night.

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donewithbeingtired
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Re: Advice please on therapy...anything else to change?

Post by donewithbeingtired » Thu Mar 05, 2015 3:27 pm

archangle wrote:Sometimes it takes a while to feel the results.

Why are you on manual instead of auto pressure? You might try setting the machine to APAP mode and see where it "wants" to set your pressure. If pressure changes bother you, you might want to start with something like 9.5 - 10.5 and then increase the max pressure a bit more gradually.

Some people find they feel better if they raise the minimum pressure as well. Sometimes the CPAP just doesn't find the right pressure for things like flow limitation, UARS, and RERA.
Thanks for the suggestion, but I went down the APAP route based on some advice on this forum and it was a disaster. Events went way up, pressure was all over the place, waking up, etc. The AHI is low with the straight pressure and I have pretty much adjusted to the sensation of the mask, noise, etc. Not looking to open up that can of worms again at this stage.

I can't help but wonder if there is something else going on. NOTHING feels different even after weeks of therapy. I get it that it takes time...but c'mon there should be something. I can go from feeling fine to feeling like crap in the course of a couple of weeks...would stand to reason that you if the therapy is truly efficacious then after a few weeks you could see some small change.

Venting I know....
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donewithbeingtired
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Re: Advice please on therapy...anything else to change?

Post by donewithbeingtired » Thu Mar 05, 2015 4:48 pm

If you are not using nasal pillows, I suggest you go to a nasal Pillow mask (preferably P10). Nasal Pillows leak the least.
I have tried the P10s but can't seem to get them to seal right. The right nostril always seems to leak for some reason. I have tried the Med and Small sizes. Its frustrating to lay there in bed for 5 mins trying to get them to seat properly. So usually just end back up with the Wisp.

Would love some advice on how to get them to work. I have searched a few times for the topic but have been unsuccessful in finding anything that addresses this aspect of the P10s.

Thanks as always, T
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