Diagnosed in August....no improvement....really?

[SnoozyQ]

Hello all...sorry if this gets a little lengthy, but I'm tired and desperate. After having issues with insomnia (and not being able to stay asleep once asleep) AND super insane daytime sleepiness,I went for a sleep study that found:

TST was 312.5 min with a sleep efficiency of 75.4%. The sleep latency was 30 min with a
REM latency of 122 min. There were several respiratory events, leading to an overall AHI of 31.7/hr,with AHI of 60/hr in REM and 30.1/hr while supine. SaO2 nadir was at 87%. The desaturation index was 16.5/hr. The PLMS index was 5/hr with a movement arousal index of 3.1/hr. The arousal index was 39/hr. Snoring was noted throughout.

Then I had to come back for the titration study that found:

During CPAP titration, pressures between 5 cwp and 11 cwp were used. The total sleep time
was 279 minutes with an overall sleep efficiency of 77%. The sleep latency was 12 minutes and the REM latency was 183 minutes. At CPAP of 10 cwp, the best sleep was noted, and the AHI was 1.2 per hour. At this pressure the desaturation index was 0 per hour and the arousal index was 8 per hour.At pressures of 10 and 11 cwp, REM supine sleep was noted. However, the arousal index was higher at 11 cwp(18.6/hr). The overall periodic limb movement index was 16 per hour and the periodic leg movement arousal index was 6 per hour.

So, they gave me the nasal pillows, which I just couldn't do. So I was allowed to change to the full mask. I can wear that more easily. I sleep through the night without waking, BUT I still feel awful!!!!! I feel no improvement--and I've even been prescribed Provigil to help with daytime, but it does nothing for me.
I miss alot of work--sometimes 2 days per week, but I just have to sleep. And I sleep for 12-14+ hours and feel like a nap within an hour of getting up. When I'm at work, I can hardly focus or make myself work, bc I'm so consumed with fatigue.

What am I missing here? I hear so many great stories of how people 'can't live without their CPAP, bc they feel wonderful' and I want that too....but I would swear I'm just as bad, if not worse. I am miserable,frustrated and so very tired.......

Would love input and feedback...

[Emilia]

Have you had a thorough checkup for other possible causes of fatigue? How is your thyroid? What is your vitamin D3 level? B12? Besides that, it could be you are still getting caught up on your sleep debt. I've been on cpap since the end of August, and I am still tired during the day, but not as bad as it was before cpap. My overnight therapy is excellent with my AHI in the 1 range and my O2 perfect. So....I am patiently waiting to get caught up on my sleep debt, but I also discovered I am super low on vitamin D3 and am taking lots (under doctor's care) to try to get into the moderate normal range (60-80).

I feel for your situtation...... but it will take time. In the meantime, if you haven't had your thyroid or vitamin levels checked, it might be a place to start.

[M.D.Hosehead]

It doesn't all add up. Can you post the studies?

[carbonman]

What am I missing here?
Would love input and feedback...

Data......daily data.

[SnoozyQ]

Hmm..Thyroid was normal last checked, but I'm not sure about D3 or B12.

I've heard of sleep debt, but it's always been 'poo pooed' when I mention it, like it's not real. How does that work?

My internal med. doc and I have wrangled with this problem for years, and the past 6-8 months have been the worst as far as fatigue goes. I miss 2 days of work per week, bc I just *have* to sleep 12-14 hours....but I don't feel rested.
Daytime is awful....I have to convince myself to NOT go sleep in the bathroom floor at work. I nearly rear-ended a dump truck last week, bc I was just so out of it on the 45 minute drive home.....
I'm on Provigil, which I find useless.

My machine doesn't allow me to view anything other than compliance info, so I have no idea if it's the machine or me.

My internal doc doesn't know what else to do with me....I see Neuro in 2 weeks.

[SnoozyQ]

It doesn't all add up. Can you post the studies?

Here ya go:


HISTORY: This is an overnight polysomnogram on this 33 year old patient with complaints of excessive
daytime sleepiness and difficulty staying asleep.
METHODS: This polysomnogram was performed using the Polysmith Digital system. A total of sixteen
channels were recorded using Grass disc electrodes placed according to the standard 10/20 electrode
placement system to assess sleep stages (C3-A2,C4-A1, 01-A2, Fp1-O2, T3-Cz, Cz-T4). Airflow was
measured using the Protech thermocouple airflow sensors. Thoracic and abdominal effort was measured
using Grass Piezo Trace respiratory effort transducers. An EPM systems snore sensor was placed on
the side of the neck to assess snoring. Axial EMG activity was recorded from the mentalis muscle.
Leg movements were recorded using standard Grass disc electrodes placed over the tibialis anterior
muscles of both legs. Electro-oculogram and electrocardiogram tracings were recorded. The oxygen
saturation was recorded using a finger probe connected to the Ohmeda Biox 3700 pulse oximeter.

REPORT: The TST was 312.5 min with a sleep efficiency of 75.4%. The sleep latency was 30 min with a
REM latency of 122 min. There were several respiratory events, leading to an overall AHI of 31.7/hr,
with AHI of 60/hr in REM and 30.1/hr while supine. SaO2 nadir was at 87%. The desaturation index
was 16.5/hr. The PLMS index was 5/hr with a movement arousal index of 3.1/hr. The arousal index was
39/hr. Snoring was noted throughout the study.
IMPRESSION:
This overnight polysomnogram demonstrates that the patient has:
1. Moderate obstructive sleep apnea which is worse in REM sleep.
CLINICAL CORRELATION: The degree of sleep apnea in this study is moderate and is worse during REM
sleep. This degree of sleep apnea may contribute to daytime sleepiness and long-term cardiovascular
morbidity. A dedicated CPAP titration study is recommended.


Titration results:

HISTORY: This is a CPAP titration polysomnogram on this 33-year-old patient with complaints of
excessive daytime sleepiness and loud snoring. A previous sleep study on August 5, 2010, revealed
moderate sleep apnea with an overall AHI of 32 per hour.
METHODS: This polysomnogram was performed using the Polysmith Digital system. A total of sixteen
channels were recorded using Grass disc electrodes placed according to the standard 10/20 electrode
placement system to assess sleep stages (C3 -A2,C4-A1, O1-A2, Fp1-O2, T3-Cz, Cz-T4). Airflow was
measured using the Protech thermocouple airflow sensors. Thoracic and abdominal effort was measured
using Grass Piezo Trace respiratory effort transducers. An EPM systems snore sensor was placed on
the side of the neck to assess snoring. Axial EMG activity was recorded from the mentalis muscle.
Leg movements were recorded using standard Grass disc electrodes placed over the tibialis anterior
muscles of both legs. Electro-oculogram and electrocardiogram tracings were recorded. The oxygen
saturation was recorded using a finger probe connected to the Ohmeda Biox 3700 pulse oximeter.
Continuous positive airway pressure (CPAP) was provided using a Respironics Inc. BI-PAP airway
management system. A humidifier was used. Mask size and type were: Fisher Paykel (HC406) mask
without chin strap. CPAP was started at a pressure of 5 cwp of water and was titrated to eliminate
apneas, oxygen desaturations, snoring, and arousals.

REPORT: During CPAP titration, pressures between 5 cwp and 11 cwp were used. The total sleep time
was 279 minutes with an overall sleep efficiency of 77%. The sleep latency was 12 minutes and the
REM latency was 183 minutes. At CPAP of 10 cwp, the best sleep was noted, and the AHI was 1.2 per
hour. At this pressure the desaturation index was 0 per hour and the arousal index was 8 per hour.
At pressures of 10 and 11 cwp, REM supine sleep was noted. However, the arousal index was higher at
11 cwp(18.6/hr). The overall periodic limb movement index was 16 per hour and the periodic leg
movement arousal index was 6 per hour.
IMPRESSION: This CPAP titration polysomnogram demonstrates that:
1. CPAP at 10 cwp had significant benefit in the improvement of the patient's quality of sleep.
CLINICAL CORRELATION: CPAP titration has demonstrated improvement in the patient's sleep quality. A
CPAP pressure of 10 cwp with a Fisher Paykel (HC406) mask is recommended.

[carbonman]

My machine doesn't allow me to view anything other than compliance info, so I have no idea if it's the machine or me.

This is the first thing to fix.
That machine is never going to tell you anything of value.

[SnoozyQ]

I think I'm going by the sleep lab today and get the graph reports....I didn't know there were such things until I just read about them, or that my doctor should have showed them to me. I only had the dictated reports.

[Emilia]

You should also ask your doc to give you a new Rx for a data capable machine.... fully data capable. You need an S9 Elite (cpap) or S9 Autoset (apap)....both of these will provide full data. Then you can get the software and be able to monitor your own therapy.

[BlackSpinner]

I think I'm going by the sleep lab today and get the graph reports....I didn't know there were such things until I just read about them, or that my doctor should have showed them to me. I only had the dictated reports.

But what you really need is a data capable machine to show you what is going on minute by minute and you don't have that - they sold you a brick.

[SnoozyQ]

Actually, no one has sold me anything yet. They are on loan....my guess is the insurance company wants to see if I will use it before they actually let me have one. Which is why I was told that the insurance company would call for the SD card in the back, to be mailed in.
Who do I talk to about a new machine? My internal doc is out of the picture with this, and I haven't seen a "sleep doctor"--only the sleep techs that did the study. I see Neuro in 2 weeks--do I ask him?

[carbonman]

Who do I talk to about a new machine? My internal doc is out of the picture with this,

'Q, will your PCP work w/you?

Tell him, nicely, that you will be in charge of your therapy.
You will need a Rx for a data capable machine.

This is the Rite of Passage into the cpap world.

Your metamorphosis through cpap is about to begin.


....it's not just about blowing air up your nose.

[Tielman]

Couple of things I can think of:

1) The standard Thyroid test is mostly useless, they need to do a "full thyroid panel", so unless you've had this done you won't know for SURE.
2) What kinds of medicines are you taking? For example, I've had to adjust my high-blood pressure medicine twice to get the dosing right after starting with CPAP. Many medicines have side-effects which change on you after you start CPAP. I have 3 that I take that state: "dizziness, fatigue, drowsiness" as side effects, and I can feel these side effects much more with the CPAP treatment, compared to before CPAP.
3) Any issues with heartburn / GERD? Sleeping with a foam wedge can significantly help. I'm un-diagnosed with "slient GERD", and a 9" foam wedge had made a HUGE difference in my sleeping with CPAP.

Agreed with everyone else, you really don't know where the issue is (leaks, still high AHI, etc) until you get a data capable APAP or CPAP.

Hope you find the answer!

[robysue]

SnoozyQ,

Don't really have any advice for you that's not already been give.

But I do want to express my empathy and sympathy for what you're going through. Your insomnia/day time sleepiness probems make mine seem like a piece of cake.

Best of luck in getting a data capable machine. That should help you figure out whether CPAP is doing something for you.

I would also suggest that you look into those PLM numbers a bit more carefully since they went up quite a bit during the titration study.

[allend]

Hello all...sorry if this gets a little lengthy, but I'm tired and desperate. After having issues with insomnia (and not being able to stay asleep once asleep) AND super insane daytime sleepiness,I went for a sleep study that found:

TST was 312.5 min
sleep efficiency of 75.4%
sleep latency was 30 min
REM latency of 122 min.
overall AHI of 31.7/hr,with AHI of 60/hr in REM and 30.1/hr while supine.
SaO2 nadir was at 87%
desaturation index was 16.5/hr.
PLMS index was 5/hr
movement arousal index of 3.1/hr.
arousal index was 39/hr.
Snoring was noted throughout.

titration study that found:


5 cwp and 11 cwp were used. The total
sleep time was 279 minutes
overall sleep efficiency of 77%
sleep latency was 12 minutes
REM latency was 183 minutes.
CPAP of 10 cwp, the best sleep was noted, and the AHI was 1.2 per hour.
At this pressure the desaturation index was 0 per hour and the arousal index was 8 per hour.
At pressures of 10 and 11 cwp, REM supine sleep was noted. However, the arousal index was higher at 11 cwp(18.6/hr). T
he overall periodic limb movement index was 16 per hour and the periodic leg movement arousal index was 6 per hour.

So, they gave me the nasal pillows, which I just couldn't do. So I was allowed to change to the full mask. I can wear that more easily. I sleep through the night without waking, BUT I still feel awful!!!!! I feel no improvement--and I've even been prescribed Provigil to help with daytime, but it does nothing for me.
I miss alot of work--sometimes 2 days per week, but I just have to sleep. And I sleep for 12-14+ hours and feel like a nap within an hour of getting up. When I'm at work, I can hardly focus or make myself work, bc I'm so consumed with fatigue.

I just spent a period of time, lasted many months where my therapy was TERRIBLE. I got a new machine that was set wrong. My pressure support was set at the difference between the ipap and the Epap. But that is for a bipap machine not a cpap machine.

What grabs me most about your study was the snoring throughout. Do you sleep with anyone and if so are you still snoring? If you don't sleep with anyone, set up a tape recorded that records on sound and time the periods of snoring, if that is what is happening. What mask did you use during your titration study? I would suggest to start with that one, get a chin strap if you need it or some tape their mouths closed.

You must get a machine that monitors your sleep because small things happen and before you know it you are wasted. Yes, it takes weeks to get yourself back to feeling good after sleep deprivation. After 2 weeks I am finally beginning to feel good. Exercise is important and it does help your sleep. How do you sleep? On your back or on your side? How often do you wake up during the night? Does the humidifier wake you because of the gurgling of water?

All these and more issues have to be brought into the discussion and you must get the software to monitor your sleep. I didn't for 10 months and I was feeling worse and worse every day. Make sure your sleep is Ok before you get into foods, vitamins and thyroids. It's probably the mask fit or you have a bad machine.