Disappointing 1-month follow-up

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Geografreak
Posts: 11
Joined: Sun May 10, 2015 8:20 pm

Disappointing 1-month follow-up

Post by Geografreak » Wed May 27, 2015 3:37 pm

Went back to sleep doc for first time since I got my machine and expressed to him that I didn't feel like it was doing anything for me. His response was that the data said otherwise, that I've gone from "not breathing" 50 times a night down to 2. He said that the pressure is correct, I'm using it above and beyond what's necessary to feel "as good as I'm going to feel" at this point. That comment right there made me want to cry. Ok, so I did cry, but I at least managed to make it to my car first.

When I asked him what the next step was he said to try a different mask (suggested a nasal pillow over a full face mask), turn the ramp off (which I don't think I'm even using - at least I never push the button for it), and that I get more sleep and lose weight.

Ok, so I can definitely aim for more sleep, losing weight is sensible advice, but doesn't feel very doable in my current state of not even having enough energy to hardly do more than heat up a frozen dinner. But then what? How long do I wait before I go back to my PCP and tell her this isn't working? How long do I wait before I talk to another sleep doc and see if he agrees with the conclusions that have been drawn?

I'm at the point where my health insurance pays 100%, so I wouldn't rule anything out.

User avatar
Krelvin
Posts: 1977
Joined: Tue Jun 06, 2006 5:23 pm
Location: Metro Phx Area - Dry Heat!

Re: Disappointing 1-month follow-up

Post by Krelvin » Wed May 27, 2015 4:18 pm

Are you sure you have your equipment listed correctly? You are listing a DS550 which is an older 50 Series unit. If you just got this unit recently, I would expect that you got a DS560 60 Series instead.

Also, do you look at your own data yet? From that a lot can be told about what your actual numbers are beyond just the AHI number. Leaks, number of hours, what pressures etc...
Current Settings PS 4.0 over 10.6-18.0 (cmH2O) - Resmed S9 VPAP Auto w/h5i Humidifier - Quattro Air FFM
TNET Sleep Resource Pages - CPAP Machine Database
Put your equip in your Signature - SleepyHead v1.0.0-beta-1
Kevin... alias Krelvin

JDS74
Posts: 3397
Joined: Sun Jan 23, 2011 2:57 pm
Location: South Carolina

Re: Disappointing 1-month follow-up

Post by JDS74 » Wed May 27, 2015 4:35 pm

First things first. Going from an AHI of 50 to one of two is a big deal. Its great progress.
That said, it sometimes takes a longer time to "feel" the benefits.
You have a Respironics machine that is capable of full data. You have selected a 50 series machine and the model you selected is likely not the actual one you have. You most likely have a Respironics 560 and not the 550 you selected.

Take out the humidifier chamber and then look on the bottom of the blower unit and see if you see something like 560P. That will confirm the model number.

Then, get a copy of either Encore or SleepyHead software so you can look at your own data.
Just post separately with the subject line "Need SleepyHead or Encore software" and you'll get directions on how to download and install. Then you can look at your leak data to see if a different mask might do better or you can post asking for help in how to adjust your current mask to control any excess leaks you are experiencing.

I use both but prefer the Encore reporting format because most of my problems show up in the breathing graphics which Encore shows as all breaths, breath-by-breath while SleepyHead but requires drilling down to the detail. Most folks here prefer SleepyHead because the summary and detail data is more useable for them. That's why I use both so I can switch back and forth when looking for a specific data report.

So, bottom line is to hang in there, get your own data, and trust that you will get to a good place after an excellent start.

_________________
Mask: Oracle HC452 Oral CPAP Mask
Humidifier: DreamStation Heated Humidifier
Additional Comments: EverFlo Q 3.0 Liters O2 PR DSX900 ASV
Oracle 452 Lessons Learned Updated
DSX900 AutoSV with HC150 extra humidifier and Hibernite heated hose
Settings: EPAP Min-10.0, EPAP Max-17, PS Min-3, PS Max-10, Max Pressure-20, Rate-Auto, Biflex-1.
Sleepyhead and Encore Pro 2.21.

Geografreak
Posts: 11
Joined: Sun May 10, 2015 8:20 pm

Re: Disappointing 1-month follow-up

Post by Geografreak » Wed May 27, 2015 5:57 pm

Thank you for pointing out that I had selected machine. It is the 560.

I've been looking at SleepyHead as well as the Respironics App, but for the life of me, other than the leak information I'm not sure what I'm supposed to do with it. According to the Respironics App my mask fit is 99 - 100%, only a couple of times getting down as low as 95%. SleepyHead reports a 30-day 90% leak rate as 11.

Image


Thank you for the assistance.

User avatar
kteague
Posts: 7768
Joined: Tue May 16, 2006 8:30 pm
Location: West and Midwest

Re: Disappointing 1-month follow-up

Post by kteague » Wed May 27, 2015 7:21 pm

Can you give us a good picture of what your sleep is like? How long does it take you to fall asleep? How many times do you remember waking at night? Are wakeups early in your sleep, later toward morning, or all night? Do you fall right back asleep when you wake? How many hours of sleep do you get? Does it feel like you are sleeping soundly or does your sleep feel shallow and restless? Sometimes clues can be in the simplest of details.

I know when we start treatment we are so hopeful for quick relief. If it helps at all, think of your first week or two as an adjustment period. You may not have actually been settled in for a while, so it's not like you had a full month of therapeutic sound sleep. See if there's any tweaking that needs to be done. Evaluate any meds you might be on. Give yourself good nutritional support. Address any contributing health issues. And expect to see some results, even if they are not immediate. Hang in there.

_________________
Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Bleep/DreamPort for full nights, Tap Pap for shorter sessions

Geografreak
Posts: 11
Joined: Sun May 10, 2015 8:20 pm

Re: Disappointing 1-month follow-up

Post by Geografreak » Wed May 27, 2015 7:58 pm

kteague wrote:Can you give us a good picture of what your sleep is like? How long does it take you to fall asleep? How many times do you remember waking at night? Are wakeups early in your sleep, later toward morning, or all night? Do you fall right back asleep when you wake? How many hours of sleep do you get? Does it feel like you are sleeping soundly or does your sleep feel shallow and restless? Sometimes clues can be in the simplest of details.
Typically I'll start my night time routine around 9:00; I read for about an hour and then I mask up and fall right to sleep. Sometimes I'll wake up just briefly right after falling asleep, other times not. It's not unusual for me to wake up around the 90 minute mark, and I think some of that may have to do with traffic at a neighbor's. Then I'll sleep through until about 5:00 or so, but fall right back asleep until my alarm goes off at 6:30. From there it's hitting the snooze button for about 45 minutes before I finally make myself crawl out of bed. A few months back I actually changed my work start time to push it back 15 minutes I was having such a hard time getting to work by 8:00; now I'm having a hard time getting there by 8:15, vicious cycle that it is. Anyway, other than those times I don't typically remember waking up during the night unless there's a reason for it that I identify.

Most of the time I believe I'm sleeping soundly. Right after I started on the CPAP I started having vivid dreams again, but that only lasted a week or two.

I don't take any meds, no underlying illness that I'm aware of.

About three years ago I had my gallbladder removed; I knew something wasn't quite right with my breathing at that point because after checking my oxygen levels once I'd woken up the nurse put me back on the oxygen. But I didn't think a lot about it, and I actually felt greats for about 6-8 months after that. Then I started feeling fatigued, dizzy, nauseous, was actually in quite a bit of pain on a regular basis. Went to my doctor after about 3-4 months of this, and she evaluated me for fibromyalgia and ordered blood tests for some of the typical auto-immune diseases such as lupus and rheumatoid arthritis. She also heard a heart murmur that she was concerned about (I told her that that was nothing new; some occupational health tests I'd had done had identified it) and ordered an EKG. All of that turned up nothing (of concern; the EKG turned up that I had the same genetic oddity that my mom and her father have with something in my heart being reversed - unusual but not bad), and when I went in for a follow-up she suggested at that time that it could be sleep related, but I was actually feeling a lot better so we decided to wait until my annual (just a few months away) and reevaluate.

When I went for my annual, I was starting a down hill slide again with the fatigue and pain again. She once again suggested it could be sleep related, but wasn't ready to put in the referral. Throughout the next year, I just sorta dealt with everything, toss in some (embarrassing) bedwetting, having bad headaches, feeling pretty crappy until my next annual at which time she referred me to the sleep specialist. According to him (and my PCP), getting the sleep thing figured out will make all that other stuff go away.

Probably more information than you really wanted, but it contributes to my impatience in feeling better. I'm irritable, can't concentrate at work, and have gotten in trouble at work due to tardiness (which isn't all due to oversleeping; sometimes I forget where I put my keys the night before even when I put them in their usual place) and not being as sharp and quick on my feet providing answers as I should be.

Thanks for the encouragement.

User avatar
RogerSC
Posts: 1891
Joined: Sat Jul 21, 2012 1:11 pm

Re: Disappointing 1-month follow-up

Post by RogerSC » Wed May 27, 2015 8:00 pm

Hard to see the chart that you posted, but I'm seeing what look to me like a lot of high mask leak nights. For those nights, the AHI that's reported isn't very likely to be accurate. I'd say that you should work on your mask leaks, since the higher the number of nights where you have major leaks, the less effective your therapy can be. What that means is that even though a low AHI is reported, you didn't really get effective therapy from your cpap for a leaky night.

Also, it's hard to tell how you're doing on a day-to-day basis with just the overview charts. It's good to see them, but the daily graphs of pressure, leaks, etc. for a few selected nights would be very helpful to see. That's the "Daily" data graphs in sleepyhead...

Are you awakened by leaks? You could try a mask liner from a place like "padacheek.com", they've been very helpful to lots of people with leak problems from FFM's. Or, as your doctor suggests, try a nasal pillow mask to see how that works.

There are several things that you can do, look at your data, and try different things. First off, I'd say publish some of that "Daily" data here, and also try a mask liner for your current mask and/or a nasal pillow mask. I'm mainly guessing on the leak data, since it's hard to see the graphs that you put in your posting *smile*.

User avatar
Enchanter
Posts: 715
Joined: Thu Apr 16, 2015 4:34 am

Re: Disappointing 1-month follow-up

Post by Enchanter » Thu May 28, 2015 2:15 am

If the numbers say he is better, I don't get why he doesn't feel the benefits right away. Why not? What's preventing it?
My Current Therapies
- CPAP + Humidifier
- Allergy Shots + nose Spray + Hepa Air Purifier
- Cardiovascular Exercise + Stretching

User avatar
Julie
Posts: 19898
Joined: Tue Feb 28, 2006 12:58 pm

Re: Disappointing 1-month follow-up

Post by Julie » Thu May 28, 2015 5:16 am

Because people aren't machines, too many other factors can contribute, things that someone may not be conscious of (being used to a small irritation, or not unaware of e.g. some minor chemical imbalance that only lab testing would pick up - though their 'body' knows something's not right). The numbers may technically say that apnea events have been interrupted, but depending on what else in their system is a bit off at any given time for any reason (not necessarily OSA or cpap related at all) they can still feel lousy.

User avatar
Enchanter
Posts: 715
Joined: Thu Apr 16, 2015 4:34 am

Re: Disappointing 1-month follow-up

Post by Enchanter » Thu May 28, 2015 1:02 pm

Julie wrote:Because people aren't machines, too many other factors can contribute, things that someone may not be conscious of (being used to a small irritation, or not unaware of e.g. some minor chemical imbalance that only lab testing would pick up - though their 'body' knows something's not right). The numbers may technically say that apnea events have been interrupted, but depending on what else in their system is a bit off at any given time for any reason (not necessarily OSA or cpap related at all) they can still feel lousy.

What's the number one reason people feel lousy? (people using CPAP trying to get better.) What would be the most common reason? And can most people get better?
My Current Therapies
- CPAP + Humidifier
- Allergy Shots + nose Spray + Hepa Air Purifier
- Cardiovascular Exercise + Stretching

User avatar
Julie
Posts: 19898
Joined: Tue Feb 28, 2006 12:58 pm

Re: Disappointing 1-month follow-up

Post by Julie » Thu May 28, 2015 1:33 pm

Of course they get better - we're not all such chumps that we've been using it for years with no improvement (and at some expense).

People can continue to feel bad for a load of reasons... whether their machine and mask are not set up properly, or tweaked when necessary over time, whether some other med problem arises (as I hinted at in the last post ) but has not yet been 'discovered' (or if diagnosed, is being ignored, untreated, etc.), whether or not they take some meds that interfere (in their particular case) with sleep, whether they kid themselves that they're compliant and aren't, or drink alcohol, or have other mental/emotional issues not being dealt with, etc. etc. etc....

Janknitz
Posts: 8410
Joined: Sat Mar 20, 2010 1:05 pm
Location: Northern California

Re: Disappointing 1-month follow-up

Post by Janknitz » Thu May 28, 2015 1:56 pm

Daily graphs are very useful. After doing great on CPAP for a while, I started to "tank" again. My numbers looked just fine. But when I looked at my charts, I could see that I spent a lot of time at the top of the pressure limits--in other words, the machine wanted to give me a higher pressure than was set. When we raised the max pressure 2 cm/H2O I felt great again, even though the numbers didn't change.

Have other things been thoroughly checked out? Has your thyroid been checked out thoroughly (NOT just a TSH)? What was your HbA1C (measure of blood sugar averages over the past three months)?
What you need to know before you meet your DME http://tinyurl.com/2arffqx
Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm

User avatar
robysue
Posts: 7520
Joined: Sat Sep 18, 2010 2:30 pm
Location: Buffalo, NY
Contact:

Re: Disappointing 1-month follow-up

Post by robysue » Thu May 28, 2015 2:47 pm

Enchanter wrote:
Julie wrote:Because people aren't machines, too many other factors can contribute, things that someone may not be conscious of (being used to a small irritation, or not unaware of e.g. some minor chemical imbalance that only lab testing would pick up - though their 'body' knows something's not right). The numbers may technically say that apnea events have been interrupted, but depending on what else in their system is a bit off at any given time for any reason (not necessarily OSA or cpap related at all) they can still feel lousy.

What's the number one reason people feel lousy? (people using CPAP trying to get better.) What would be the most common reason?
In the words of Morbius: CPAP doesn't fix bad sleep.

That's the most common reason that some folks don't feel much better after using CPAP for a while: There are things beyond untreated/under treated OSA that are causing their sleep to be bad. And CPAP only fixes sleep disordered breathing.
And can most people get better?
Yes, most people do get better. And many of the people who get better rather quickly never find cpaptalk.com because they really don't need cpaptalk.com. Seriously: If you go in for a sleep test, you get diagnosed with OSA, and you start CPAP and then you start feeling much better within a couple of weeks of starting CPAP, then you don't have much need to get on the internet and start googling things like "problems with CPAP."

Many (not all) of the newbies who find their way to cpaptalk are folks who run into trouble making this crazy therapy work. They start looking for help on-line because they have not gotten any meaningful help from the doc or the DME.

And for some of us, starting CPAP itself adds a whole 'nother layer of complexity to the issues that we already have getting a good night's sleep. In other words, at the beginning of therapy, CPAP itself can be a contributor to "bad sleep"----it's hard to get a good night's sleep if you are also simultaneously dealing with any of a number of common newbie problems: Leaks, even small leaks, can be highly disrupting to your sleep cycles. Rainout causes serious issues for some people. Aerophagia is an issue that can create microarousals, which then trigger more swallowing which leads to more aerophagis, and that can be very disruptive when you're trying to get a good night's sleep. Heck, just plain old sensory overload from the feel of the air being blown down your throat and listening to the sound of your own breathing being amplified through the hose can be disturbing to some people's sleep. Fortunately with some perseverance, patience, and some work, most common newbie problems with CPAP can be resolved. And once the problems are resolved, it's possible to then learn how to sleep well with a CPAP instead of sleeping badly with a CPAP.

And after they are sleeping well with a CPAP, most people do improve, and many of them improve dramatically.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5

Geografreak
Posts: 11
Joined: Sun May 10, 2015 8:20 pm

Re: Disappointing 1-month follow-up

Post by Geografreak » Thu May 28, 2015 4:32 pm

Janknitz wrote: Have other things been thoroughly checked out? Has your thyroid been checked out thoroughly (NOT just a TSH)? What was your HbA1C (measure of blood sugar averages over the past three months)?
I don't think they have; I don't have any record of thyroid function ever being checked; my blood sugar is usually spot on. There are a couple of other things that through playing doctor and spending time googling I would recommend I be tested for. But, I also know that over-testing attributes to high cost of health care and if it's just a matter of *time* maybe I'd be jumping the gun running to my PCP and saying, "This isn't working. I still feel crappy, what's the next test?" I don't know what that balance is.
RogerSC wrote: Are you awakened by leaks? You could try a mask liner from a place like "padacheek.com", they've been very helpful to lots of people with leak problems from FFM's. Or, as your doctor suggests, try a nasal pillow mask to see how that works.
I've been woken up once or twice by mask leaks; I've readjusted and gone back to sleep. Sleepyhead reports usually <1% in large leak territory. Sometimes (but rarely) the large leak is me taking off the mask to get up for a few minutes. Here're a couple of daily leak graphs:

Image

Image

Image

Thank you for the help and support.

User avatar
chunkyfrog
Posts: 34377
Joined: Mon Jul 12, 2010 5:10 pm
Location: Nebraska--I am sworn to keep the secret of this paradise.

Re: Disappointing 1-month follow-up

Post by chunkyfrog » Thu May 28, 2015 6:09 pm

High mask leak seems to be the number one cause of any problems I have.
I go through a lot of pillows just because they get too leaky, too fast.

_________________
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Airsense 10 Autoset for Her