Not breaking thru - any words of wisdom?

[My2wins]

I was diagnosed with hyponea after multiple sleep studies, and my numbers are borderline. But my hypersomnia (sleepiness) is off the charts, way beyond what my stats would suggest. My diagnosis is "idiopathic hypersomnia."

I've had this forever and a day. I'm 46 but remember feeling this way at 6. Could never get up in the morning then, and still struggle. I wake up with a hang over feeling. (I rarely drink, mostly because it exacerbates how exhausted I am). My dad had the same, and his dad too. My brother seems to have it, but not as bad as I do. We all are high performing professionals with families and big careers. But dragging through every day as if we got 3 hours of sleep.

I tried CPAP two years ago and gave up after 6 months when I didn't see improvement. The main issue was that no mask fit, and I could never get through the night without leaking air.

I restarted it about 2 weeks ago and am determined to see it through. This time I tried nasal pillows and I am finding no leaks. So far so good.

But I am not seeing any improvement. Over two weeks I finally built up to wearing it all night for the first time last night. But I am more tired today than ever. On a scale of 1 to 10, my usual sleepiness is a 7. Today its a 9.

I'm discouraged and just wanting to ask for any words of wisdom.

Thank you.

[chunkyfrog]

For the past few years, you have been running on adrenaline. (Bad for your heart, kidneys, etc.)
The catch is that you are used to all that "peppy juice" in your system.
Once your withdrawal from your own adrenaline is complete, you will gradually begin to feel what real energy feels like.
It took me several months, and it sneaked up on me very gradually.
Others noticed before I did: "You seem to be in a better mood"; "Grandma, you laugh more now."
And then I started to notice: "OMG! I just walked 10 blocks and I'm not out of breath!"
It doesn't usually happen fast.

[kteague]

Hello, Hopefully some much wiser than I will come along soon, but here's what I've got. I think it is only after a period of time consistently getting enough sleep with therapeutic treatment that it is realistic to expect a marked difference in how one feels. You are making progress - found a mask that doesn't leak and increased your use time - so you're headed in the right direction. Quite a few have reported on here an increased desire for sleep early on in the treatment. For me I think once my brain realized it could safely sleep, it craved it more and more - until the need was satisfied. The tricky part when symptoms remain once some time has passed is knowing if treatment is therapeutic and it's just that more time is needed, or if something about the treatment still needs tweaking. Data is useful in determining that.

Some things for you to think about... You mention other family members having the same sleepiness. OSA does tend to run in families. Do they have OSA? Have you had a medical workup to rule out other contributors? Are you on any meds the sleepiness could be a side effect of? Do you have any issues with your legs moving in your sleep? If everything else is a negative, maybe narcolepsy should be looked at, but that wouldn't be my first thought unless there are some other frank symptoms. And as a long shot - if you all live in the same house, could it be toxic?

Not throwing all these things out to alarm you, but rather, to show you that there are things you can work through to help you address your problems. The most frustrating thing for me was knowing something was very wrong yet it remained so mysterious. Turned out most of my issues were tangible and treatable. Good luck as you go forward.

[RandyJ]

Could you possibly post a copy of your last sleep study? (Be sure to white out any identifying info before scanning it.)

Seeing the sleep study might allow people here to better help you, especially if you don't meet the criteria for traditional OSA.

[RestedRebel]

Although I found improvement from the beginning, it probably took a whole month for me to start sleeping well enough to feel restored in the morning. Each subsequent day I felt better and better, and it was a gradual thing for me. Now I wouldn't want to sleep without my machine, and I can breathe so much better through my nose which isn't all stuffed up anymore like it used to be.

Everyone is different, though, and you'll have to find your own path because what works for one person might not work for you and vice-versa.

[My2wins]

thank you for the replies. Helpful to hear some ideas, and I'd welcome any additional thoughts. I do feel a bit better just hearing there's hope.

My family members with the same symptoms all live in different homes now. We think its genetic not environmental, although there's always a chance for additional factors. The fact is I've lived in 5 or 6 different places from birth to now, and nothing has changed. I've also gone through a full medical work up repeatedly over the years, and nothing else seems to be contributing, at least at face value. If I had a specific thing to look further at, I would. But all my general health indicators are normal across the board, (with the exception of a PCOS diagnosis 15 years ago for which I take Metformin.)

I've had sleep studies done in three different clinics in the SF bay area, from 2008 to present, including a brand new state-of-the art sleep clinic at one of the world's leading universities. They also tested for narcolepsy, restless legs, and a few other things. Nothing stood out, so that's why they came up with the idiopathic diagnosis.

One of my reports says "possible UARS." When I asked for clarification in my last visit, the doctor said the treatment is the exact same for hyponea, UARS or apnea, so its not worth spending too much time splitting hairs on the exact cause, just on getting the variables right in my CPAP treatment. That's why I am giving it another shot.

Thank you for the offer to review my report. I don't have a way to scan it till next week, but in the meantime, here are the top line numbers:


Sleep Study 2/22/11

SUMMARY
Apnea Hyponea Index (AHI): 11.9
Oxygen Desaturation index: 3.7
Minimum Oxygen Saturation: 92%
Presence of snoring: Yes
Periodic Limb Movement (PLM) Index: 0.0

SLEEP ARCHITECTURE
Total sleep period (minute): 462.5
Total sleep time (minutes): 450
Sleep efficiency: 96.2
Sleep onset latency (SOL): 5.5 min
number of stage N1 shifts: 42
number of stage shifts: 190
number of awakenings: 19
number of REM periods: 5
REM latency: 61
REM latency minus awake: 60.5

SLEEP STAGES
Stages TIME TST% LATENCY FROM SLEEP ONSET (MIN)
WASO 12.5
Stage N1 50.5 11.2 0.0
Stage N2 231.5 51.4 1.5
Stage N3 61.5 13.7 16.5
R&K Stage 3 42.0 9.3 16.5
R&K Stage 4 19.5 4.3 21.5
Stage REM 106.5 23.7 61.0


Apnea events #:0

Hyponea events #:
w/ AR: 3.5
w/desat: .7
w/AR + desat: .4
no assoc: 0
total #: 4.5

(omitted: detailed chart with hyponea events during Non REM, REM, and by position: supine, non-supine)

Respiratory events by sleep and body position:
Supine: 13.1 (10.9 NREM, 19.2 REM)
non-supine: 0
Total: 11.9 (NREM 9.6, 19.2 REM)
RDI 11.9

Percent desaturations required 3
Total number of desaturations 28
desaturation index (desats/hour) 3.7
average duration of desats: 35.45

That's about it...let me know if anything stands out. Thank you!!

[jaybeem]

I have been on CPAP for nine weeks, and I am just beginning to feel like a normal human being. It seemed to me that my body had been trained by apnea: don't sleep deeply...you can't breathe! Besides feeling like I was not getting any REM sleep, my sleep was very fragmented for many weeks (mostly from severe dry eyes and hypersensitivity to leaks). So it has taken some time to go to sleep, stay asleep, and wake up refreshed.

I have the same machine and mask that you have. It helped me a lot to download SleepyHead, look at the data on the S9 SmartCard, and upload some charts for the resident experts to look at (search on how to do all of this). Their input that my data looked good was very encouraging. I suggest you do the same, as there may, in fact, be some explanation for the poor quality of your sleep.

Someone said to me early on that this was a process, not an event. It helped me give up the "magic wand fantasy" and adhere to the "one-day-at-a-time" approach.

I think it is natural to be discouraged when you don't see improvement, but hang in there! It can't work if you don't give it time to. May sleep come soon and sound for you...

[Julie]

Hi - I think you might be interested in reading this -

viewtopic/t70205/-Mars-Given-OK-On-Posi ... rapy-.html

[loopylooloo]

Have you had your thyroid checked? This can cause some of the things you have mentioned...including the low breathing. I believe I have hypnoea a well, but they diagnosed with OSA. I had more of the hypopneas that the obstructions. My O2 went down to 87 percent at one point, but I don't know how many times. I'm goingto have to get the full report to know. Also...what about your adrenal glands? I don't want to send you on a path of research like I do because it creates a great deal of anxiety within me when I do, but Ijust thought I'd mention it. Hypothyroidism can really wipe you out and create some really crappy feelings. Hang in there. I know I'm trying to. I can't get used to my CPAP at all...it's causing a lot of issues. I'm having panic attacks and don't know why....thyroid? Left over from the middle of the night when my sleep apnea kicks in and my body tries to keep me alive? I don't know...but I pray I find an answer soon!

[SleepingUgly]

You sound like me.

I've had sleep studies done in three different clinics in the SF bay area, from 2008 to present, including a brand new state-of-the art sleep clinic at one of the world's leading universities.

Stanford?

They also tested for narcolepsy, restless legs, and a few other things. Nothing stood out, so that's why they came up with the idiopathic diagnosis.

Well, if Stanford tested you for narcolepsy and said you didn't have it, I'd believe that. On the other hand, I don't think Stanford would diagnose you with both OSA & Idiopathic CNS Hypersomnia, so maybe this is not Stanford... (just thinking out loud)

Also, you didn't go into REM for 60 minutes, so that's not very compelling evidence of narcolepsy. If you had cataplexy or something, I'm assuming you would have mentioned it (not that you couldn't have narcolepsy without cataplexy).

One of my reports says "possible UARS." When I asked for clarification in my last visit, the doctor said the treatment is the exact same for hyponea, UARS or apnea, so its not worth spending too much time splitting hairs on the exact cause, just on getting the variables right in my CPAP treatment. That's why I am giving it another shot.

I agree.

When was your last CPAP titration? Do you have a data capable machine? (I need to check your byline)

Respiratory events by sleep and body position:
Supine: 13.1 (10.9 NREM, 19.2 REM)
non-supine: 0
Total: 11.9 (NREM 9.6, 19.2 REM)
RDI 11.9

Are these per hour? So you had 0 non-supine? Look at your other studies and see what it says about supine vs. non-supine. You may have positional apnea. That would be great, if you did.

[My2wins]

I appreciate the replies and wanted to say how much the various comments each helped. I had never heard anything about positional apnea before, but it makes a lot of sense, especially given my report. What a great suggestion to post my numbers. I never looked at the positions or correlated all my events to supine vs unsupine. (I don't think I even realized that was relevant, d'oh!)

For the last few nights I've rigged up my sleeping situation to ensure I'm on my side. No change the first two nights, but last night, BAM! First time I can ever remember waking up feeling like a human being not a zombie. It's really so foreign to me.

I logged a whopping 4.9 hours
on the machine -- which is one of the first times I've gotten past 2 or 3 hours per day, ever.

I didn't realize I could check the stats, and once I started doing this each morning this past week, it somehow helped me keep the mask on longer each night, instead of leaving it off the first time I awoke each night.

I guess the old Albert Einstein quote is true, something about if you want to improve something, you need to measure it. (They didn't call him Einstein for nothing, LOL!)

Will keep on keeping on. Just wanted to report back while I am having my initial moment of awe, having awoke with this strange and unfamiliar feeling that many call being well rested.

[My2wins]

Could you possibly post a copy of your last sleep study?

Thank you for the suggestion. I never realized there was so many other good hints in the study report. This was very enlightening just for me to transcribe the top line nums

[My2wins]

Stanford?

Yep, they are the current place I am going. 4 total clinics since 2008, now that I think about it.

Well, if Stanford tested you for narcolepsy and said you didn't have it, I'd believe that. On the other hand, I don't think Stanford would diagnose you with both OSA & Idiopathic CNS Hypersomnia, so maybe this is not Stanford... (just thinking out loud)

One of the other places ruled out narcolepsy, so Stanford didn't retest. I was given a separate day time sleep study, right after the usual night time study, where I had to nap, wake, nap four times over the course of several hours. The summary said I reached REM each time, fell asleep in about 4 mins on average per cycle, no narcolepsy and that results were indicative of moderate to severe sleepiness. Diagnosis was possible UARS, and suggestion/RX was CPAP.

Also, you didn't go into REM for 60 minutes, so that's not very compelling evidence of narcolepsy. If you had cataplexy or something, I'm assuming you would have mentioned it (not that you couldn't have narcolepsy without cataplexy).

I don't have cataplexy per se, although I do think I have experienced it before, or something similar, but only on occasion; it was a strange feeling that I recall vividly so I did some research to see what it was. But it only happened a few times and that was 5+ years ago.

When was your last CPAP titration? Do you have a data capable machine?

Last titration was Feb 2011

I have S9 Redmed. I think its data capable, but not yet sure how to collect data, other than the little "i" button. Will research that per the other poster's suggestion to use the software.

Respiratory events by sleep and body position:
Supine: 13.1 (10.9 NREM, 19.2 REM)
non-supine: 0
Total: 11.9 (NREM 9.6, 19.2 REM)
RDI 11.9

Are these per hour? So you had 0 non-supine?[/quote]

Yes 0 non-supine (which somehow NEVER occurred to me as significant till this thread when you and others flagged it...thank you again all!!)

Yes, these are per hour

The report footnote says: "...AHI represents the number of abnormal respiratory events per hour of sleep (normal is under 5 in an adult). Abnormal respiratory events comprise of obstructive/central/mixed apneas and AASM modified hyponeas. The modified hyponea describes events lasting at or over 10 seconds, of 30 seconds or more reduction in airflow...and association with 3% oxygen desaturation or EEG arousal..."

[RandyJ]

Could you possibly post a copy of your last sleep study?

Thank you for the suggestion. I never realized there was so many other good hints in the study report. This was very enlightening just for me to transcribe the top line nums

There is a lot of good stuff in those sleep studies. And fortunately, a lot of people here who know how to read them and identify important info.

[mollete]

One of the other places ruled out narcolepsy, so Stanford didn't retest. I was given a separate day time sleep study, right after the usual night time study, where I had to nap, wake, nap four times over the course of several hours. The summary said I reached REM each time, fell asleep in about 4 mins on average per cycle, no narcolepsy and that results were indicative of moderate to severe sleepiness.

A Mean Sleep Latency of < 5 minutes on MSLT is pathological (severe).

Two REM naps in an MSLT is indicative of N. so REM in all four makes you a Screaming Narcoleptic.