Detective work needed when we don't feel the good numbers

[jabman]

Good post to read after a brief absence from this site, Pugsy thank you.

I agree that that if someone’s numbers are constantly good that it could be other underlining health conditions. My question is though, how soon after you start CPAP treatment do you want to look into the possibility that it could be something else and not just sleep debt?

[BlackSpinner]

Good post to read after a brief absence from this site, Pugsy thank you.

I agree that that if someone’s numbers are constantly good that it could be other underlining health conditions. My question is though, how soon after you start CPAP treatment do you want to look into the possibility that it could be something else and not just sleep debt?

Well think about, how long does it take to heal a broken leg after a cast is on? How long does it take a kidney to heal? Because there may be decades of damage to be healed.
I had a kidney infection at 13, nearly died from it. I spent over SIX MONTHS in bed rest before they and my body healed enough to go back to school.

[Pugsy]

My question is though, how soon after you start CPAP treatment do you want to look into the possibility that it could be something else and not just sleep debt?

That's a tough call. One week is obviously too soon to start worrying but I have seen people be unhappy because they "use the machine all night last night...the very first night...and I still feel horrible". I just kind of chuckle when I see those sort of comments.

My own personal thoughts...3 months of continued good reports...good hours of sleep...minimal fragmented sleep...make sure that part of things is well managed and if still zero improvement...then start the detective work. While it might be that more time is needed it won't hurt to quietly eliminate other potential culprits.

Trouble sleeping with the mask, leaks, frequent wake ups and all those usual things need to be resolved though before I would start worrying about hidden factors. Start with the usual stuff first and then work down the list of possible factors.
If someone takes 3 months to find the right mask and start sleeping decently I don't think it counts in that 3 month window because therapy hasn't even been optimal at that point. If it takes someone 6 months to sleep more than 4 hours with the machine.....we really need to work on that aspect first.

Of course it never hurts to look at the other stuff no matter what stage of therapy we are in..especially when it comes to meds and maybe not sleeping so great. I take a medicine for pain that if I take it at night it wires me up and I simply don't sleep. It would be silly of me to wonder for 6 months about why I am not sleeping well and not investigate meds as a culprit sooner than later. That really comes under the heading of "not getting optimal sleep" though. I couldn't say that I have great reports and sleep well and get adequate hours of sleep and wonder why I didn't feel good.
It's never to soon to learn about meds or hours of sleep and how they might interact. It doesn't cost a doctor's visit to do a bit of reading on the internet to try to determine if any meds a person might take could possibly be impacting how a person sleeps or feels the next day.
I usually opt for cheapest and easiest detective work first...figure might get lucky.

[Janknitz]

Here's my story and I think it illustrates a lot of points.

It took me months to finally adjust to CPAP, but once I did I was feeling pretty good. Most noticeably, my "perimenopause" symptoms of waking with night sweats went completely away. That was awesome--I was sleeping through the night for the first time in YEARS.

But after about a month they came back. My numbers were picture perfect, but when I downloaded my data, I could see that my APAP pressures were hanging out "near the ceiling"--in other words, the pressure looked like it wanted to go higher, especially in the middle of the night when the wake-ups occurred, even though it was doing a good job of controlling my apneas. I saw the sleep lab tech, who started to tell me that it's "just menopause" but I asked her to take a good look at the data. I got one of those "I don't think it will help, but we can raise your pressure a little" from her. So we raised my pressure by 2 cm, and once again I was sleeping like a baby and feeling much better.

Q. What do they call it when men wake up with night sweats???
A. A serious problem we need to get to the bottom of

Q. What do they say when women wake up with night sweats???
A. Oh, just live with it, it's menopause.

Amazing--CPAP cures menopause.

[Annie aka tqpannie forgot to log in]

I received several diagnosis prior to sleep apnea

1. COPD
2. Hypoxia
3. Tachycardia
4. 49 lbs over weight

Sleep study done and after 3 months my Ahi is now .5 to .6

Now we are taking next steps in treatment- on supplemental o2.

Went to cardiologist who ordered an echo and holter monitor to see if I can be cleared for exercise.
Appoint ment with dietician for medically supervised weight loss
Ha1c test for diabetes
Smoking cessation with accupuncture.

Take one thing at a time because this isn't quick fix. This is lifestyle changes to live a better life. I do believe that I have had sleep apnea since my teens. I also believe eve it is the first issue to correct because restorative sleep is so important and I was getting 12 minutes prior to treatment.

COPD is my own fault. I have to find ways to cope with that but you have to be your own health advocate and educate yourself.

[archangle]

I suspect a fair number of CPAPers die unnecessarily because they ignore symptoms of some other treatable condition and blame it on CPAP.

I suspect another fairly large group of CPAPers die because their doctor made the same mistake.

Of course, doctors (and patients) do this with a lot of conditions. I knew a guy who got tagged as "pre-diabetic" after a blood test of some sort years ago. He was fairly thin, but lost more weight and got checked and never had any abnormalities again. Every time he goes to a doctor now, they get lazy and blame it on "his diabetes" and don't bother to really try to find the real cause.

[Lizistired]

Q. What do they call it when men wake up with night sweats???
A. A serious problem we need to get to the bottom of

Q. What do they say when women wake up with night sweats???
A. Oh, just live with it, it's menopause.

Amazing--CPAP cures menopause.

Oh Yea, That's why I avoid doctors! Love it!

[Always tired]

Never know but we might stumble on to something that makes a big difference..might not but if we don't try...we sure won't.

I fought for months to get referred to an endrocronologist to ask him to look into my fatigue. One of the things a good endo should do is order a new blood test that looks at things that a routine test from a primary care doc will not even consider. My endo blood test showed the possibility of adrenal and pituitary tumors (both can cause fatigue) but fortunately did not have a tumor. Just another avenue to consider.

[jencat824]

This is a great post. I will give this some time & thought, then will post my list. Yes, I said list because I think that is what Pugsy has in mind. We do need somewhere to look when CPAP is step 1, and someone hasn't taken step 2 & 3 and has no idea what step 2 should be. Although that may differ with each person, I would think some kind of flow chart for reference might help. Something like, "poster tried CPAP x6 mos, good numbers, go to step 2a or 2b, depending on what else they indicate is bothering them". I have everything & the kitchen sink wrong with me, so maybe I can think back into my diagnosis process & contribute some avenues that make sense to check for. Of course having poster google 'sleep disorders' is one approach, but I think, speaking for myself, a lot of my fatigue is due to other disorders, not my OSA or other sleep disorders. For instance MS causes fatigue, fibromyalgia causes fatigue, pituitary tumors cause fatigue - I have all.
I'll post thoughts on this again.
Jen

[Always tired]

I would think some kind of flow chart for reference might help.

Jencat824,
I have been thinking almost the same thing. Something like a pre-flight checklist, human trouble shooting guide, or an always evolving spread sheet. Our collective wisdom presented in an easy to access one stop format could be powerful.
A T

[johnthomasmacdonald]

archangle said: "I suspect a fair number of CPAPers die unnecessarily because they ignore symptoms of some other treatable condition and blame it on CPAP.

I suspect another fairly large group of CPAPers die because their doctor made the same mistake. "

Good observation - my sister has had MS for 40 and when she was seeing a new doctor about a problem, she would NOT tell him she had MS since she claimed that if she did, it was a waste of time as he would blame all here symptoms on MS - her exact quote: " if i went into the doctor with a spear in my back complaining of back pain, they'd blame it on the MS"

[49er]

archangle said: "I suspect a fair number of CPAPers die unnecessarily because they ignore symptoms of some other treatable condition and blame it on CPAP.

I suspect another fairly large group of CPAPers die because their doctor made the same mistake. "

Good observation - my sister has had MS for 40 and when she was seeing a new doctor about a problem, she would NOT tell him she had MS since she claimed that if she did, it was a waste of time as he would blame all here symptoms on MS - her exact quote: " if i went into the doctor with a spear in my back complaining of back pain, they'd blame it on the MS"

Interesting about your sister, John and she is so right about the spear comment.

This happens to patients with psych meds histories all the time as I experienced with my first sleep doctor. Many people have learned they have to do whatever is necessary to cover it up because receiving the appropriate treatment is at stake. And in some severe cases, this could be the difference between life and death.

49er

[Always tired]

I passed this subject along previously, but since this thread may evolve into a data base of sorts I am going to add it in.

The pee factor especially at night is a royal pain and nothing new, and going only once or twice as opposed to 5-6-7 times a night is wonderful. Urologist tried me out with PTNS or Percutaneous tibial nerve stimulation. I had to keep a fluid intake/pee out log for several months. Early in the testing I peed 19 times in a 24 hour period, nothing near that much now. PTNS helps with OAB or Overactive Active Bladder and works on men and women, and thankfully works for me.
http://www.renalandurologynews.com/ptns ... le/158097/#

[Gerald?]

Pugsy

I think sleep hygiene tips should be fairly high up on the list. If you have OSA its highly likely that you had awful sleeping habits too. If you wake up more tired than when you went to bed, you tend to avoid bed. So people might have good AHI but still not be getting enough hours, go to bed over stimulated, take long day time naps etc. I think all these things contribute to whether or not you feel rested too.

I think also mattresses and pillows are worth looking at. Bedding that is uncomfortable will lead to poor quality sleep even though your AHI might be fine. Again OSA might mean you only used to spend 2-4 hours in bed and you may not realise how uncomfortable your bed/pillow is until you start spending 7-8 hours in it.

Totally agree with the complete physical, but general physicals don't necessarily identify things we know cause sleep problems. Perhaps there should be a list of things to be specifically checked for in addition to the normal physical. There are a few people have already identified. For example GERD is something that might not show up on a general physical.

Great idea Pugsy.

[Pugsy]

Normally I have a set "speech" that I go into when someone doesn't feel the good numbers.
By good numbers I mean a nice low consistent AHI, minimal leaks, and decent hours of minimally fragmented sleep.
So that is why I will often ask "how many hours of sleep" "and are those hours fragmented for any reason". If there is not enough hours of sleep or someone says they wake up a lot then we go into the "let's get your sleep optimized" speech.
We can't expect to feel good if we don't get enough good quality sleep. Let's face it 5 hours of sleep isn't going to be enough for the body to use the powers of restorative sleep optimally.
So that is the first thing I suggest that people look at. Sleep quality and quantity. Sleep hygiene in general.
If sleep quality is poor then we look at possible causes of poor quality sleep...that means meds, bed comfort, mask comfort, pain, other health issues, insomnia, etc. Sleep quantity can also be tied to those very same possible factors.

Then when someone says..."I sleep 7 or 8 hours a night...I rarely wake up...my AHI is nice and low...leaks are minimal and never wake me up...I don't take any meds that might make me feel yucky during the day"...stuff like that then I start thinking of the "general" physical exam stuff and maybe some specialized blood tests.

Example..I will use myself here. Meds affecting how a person might feel.
I have some pain issues due to a yucky spine and pelvis. Stuff I am pretty much stuck with at my age. So I take a little amitryptiline (10 to 20 mg) at night to help me sort of sleep through the pain a bit. If I didn't, then I wake up with every little movement in bed. If I turn over in bed it hurts enough that it will wake me up. I can't stay in one position or it hurts and wakes me up. Damned if I do and damned if I don't.
So the amitryptiline helps but I am not the greatest patient in the world and even though I take a very small dose at night sometimes I forget to take it early enough before my bedtime and when I take it late...like 11 PM when I finally remember then I feel rather yucky the next day. Sort of groggy feeling. If I take my pills around 8 PM then I really don't have much yucky feeling the next morning if I get 7 or 8 hours of sleep. If I only get 6 hours of sleep...even if it is "good" sleep with minimal to zero awakenings...I still feel a bit yucky. I just need more hours of sleep...but sometimes I can't get those hours. Maybe my dogs wake me up.. or whatever.