Help! Discerning comorbidity with Narcolepsy

Hi All! I need some advice!! I'm awaiting Sleep Study Results I took this past Sunday.

Besides losing 40 lbs, I decided to take a Sleep Study after continuing sleep related problems. I'm in complete compliance according to my Encore Reports and rarely have Apneas above 2.

I've been plagued by excessive daytime sleepiness (EDS), memory problems, confusion, problems talking (slack jaw) and occasional clumsiness. Foggy brain and really not getting much of anything done. Struggle paying attention to someone talking and lapse in and out while driving (scary).

After reading about Narcolepsy, and relating somewhat to the disease, I decided to do an experiment. After drinking 300mg of caffeine, hour later I laid down and put on the BiPap. This was about 11:30 A.M.

I fell asleep quickly and awoke half hour later. I generated a Encore Report and was startled. Towards end of half hour was filled with Apneas, no hypopneas or Snores, no leaks. Apneas was 16?? Hmmm!

My question: Does Apneas happen most frequently at REM sleep? And, if it does, would someone with Narcoplepsy fall quickly into REM and have Apneas at sleep onset??

It's not uncommon for me to have very frequent apneas at sleep onset, i.e. within first forty five minutes of sleep at night. I'm struck at the Encore results of half an hour nap, late morning, within an hour of drinking so much caffeine.

I set my new titration settings from the sleep study. My previous settings I had determined myself were only slightly off.

I'm sure the Sleep Study will show a REM abnormality, if one exists. I just don't think it's normal to wash down a Provigil with a lot of caffeine and then take a nap

Thanks and gratefully,

SG

Hi, there seems to be a little confusion, on whose part I'm not sure, but... The first (and trivial thing in a way) is that an apnea is the event where you stop breathing for a short time (though longer than a hypopnea would be - that's like a mini-apnea). Apneas is the plural of the word apnea, not a singular condition or symptom as such. Anyhow, you also said you napped for half an hour after drinking of ton of coffee, then tried to interpret a report based on that. However, the machines generally do not give anything close to accurate reports unless you've been asleep for at least 4 hrs or so, and therefore your experiment was pretty useless as far as reporting goes. Thirdly, you were apparently diagnosed with sleep apnea and set up with appropriate equipment. The fact that you are not yet feeling the full effect of treatment (there could be many reasons) does not mean you have narcolepsy. That would have been picked up on the lab test in any case, so even if you still feel tired, far more likely explanations could be that a) your body's "sleep debt" has just not yet been paid off by using Cpap, b) you are breathing with your mouth open while sleeping (as many of us do, often just since starting Cpap) and may need a full face mask rather than just a nasal one instead, and c) various other things which you could discuss with your MD, or wait to hear from others here on the forum. Good luck!

Thanks Julie: I didn't know that it took four hours for the 'data enabled' BiPap to have accurate results. So, you are correct, the experiment failed!!

In regards to the 'Sleep Debt', how many years of Compliance must I have? It's been over a year and a half... And, I've been very diligent regarding keeping my AHI below 2. So, I have to conclude something else is going on..

No, mouth breathing is absolutely unacceptable!! I don't wear the mask without tape!! That's a given..

take care,

SG

Hi SG,

When was the last time you had a good physical and labs drawn?
I have fibromyalgia and have most of those symptoms you mentioned (although that condition doesn't show up on labs).
I believe I remember hearing that narcolepsy is tested during the daytime.
What else is going on in your life that may be really stressing you?
Are you eating well? (lower carbs and sugar).
I don't know if this is relevant at all, but I've been severely fatigued, which started with my fibromyalgia and perimenopause. I began using cpap a little over 2 years ago. Recently, I've needed less sleep and I have a ton of energy. I was wondering if I'd finally got caught up on my sleep???
Anyhow.....you sound more like sleep deprivation than narcolepsy. Just remember though.....there may be other causes of your symptoms rather than just sleep.

Julie wrote:However, the machines generally do not give anything close to accurate reports unless you've been asleep for at least 4 hrs or so, and therefore your experiment was pretty useless as far as reporting goes.

Can you tell me where your info about the 4 hours required for useful data comes from? It just doesn't make sense. If it were true we'd only get about 4 hours of "useful" data for a good night's sleep of 8 hours.

Country4Ever, you couldn't be more right!! I talked with a Psychiatrist about how I was feeling. It's not depression but I believe it's stress related.

We've had a very rough relocation. Matter of fact, we've moved twice in fourteen months. Hard on a family!! So yeah, stress is a factor! And, Support Network is gone. Have to build a new one along with new Doctors etc...

I lost my weight using the Atkins Diet and got off during the relocation. So Carbs, caffeine and sugar intake has increased. Now your making me think that high caffeine intake is causing less sleep efficiency, hence daytime fatigue and drowsiness. Interestingly, sometimes Provigil works, sometimes not. I use it very sparingly.

The Psychiatrist thought my problems needed to be solved by the Sleep Doctor. He speculated the Provigil wasn't being managed correctly or some other medication needed to be used.

The Sleep Study will reveal problems with REM. I would assume a Daytime Study will be prescribed by the Sleep Doctor if Narcolepsy is suspected.

The crux of this post, does severe Apnea at sleep onset indicate slipping into REM too quickly i.e. first 45 minutes of sleep??

P.S. Julie, now I understand why 'apneas' is marked mispelled. Thank you!!

One thing I would avoid whenever possible is taking caffiele (coffee, etc. or chocolate) or therobromine (chocolate) close to bedtime. Although I don't seem to notice an effect from caffiene (does not make me 'wired'), I do see a difference in sleep when I have backed off substantially on it.

As far as the four hours go, realize that your nightly AHI is an average of the time you have been sleeping. Your AHI for some given hour may be much higher, so sampling an hour where you know you had issues gives you a falsely high AHI. That is not completely invalid, though because a big cluster of apneas/hypopneas together can cause a significant oxygen desaturation event, and desats are what do the real damage in sleep apnea. A long-term therapy is both keeping your average AHI as low as practical, and keeping apnea/hypopnea clsuters to a minimum. These clusters may be part of the reason you are not getting the rest you expect. But you have enough symptoms that you should be talking to a doctor about it.

BTW, low carb diet works very well for me, when not being overwhelmed by unwanted stress like right now.

However, the machines generally do not give anything close to accurate reports unless you've been asleep for at least 4 hrs or so, and therefore your experiment was pretty useless as far as reporting goes.

Thank you Guest! I was waiting for someone to question what Julie said I'm curious too and have thought about it since... Julie, qualitatively yes, quantitatively no. This goes against Entropy. The Encore Reports can't go back and change moment by moment data after four hours. Wow, what programming that would take!!

My half hour of data was real time and accurate. Rarely do I wake up and am cognitive of an Apnea. And, the Apnea Flags were dense and close together. I think this is odd for a short 25 minute nap. I really want to understand!!


thanks,
SG

I'm not an expert, but it seems to me you cannot extrapolate nap data into sleep (nighttime sleep, that is) data.

There's a book out called, Take a Nap - Change your Life! which describes the various sleep stages and how to time naps so you get the type of sleep you need.

I suspect, from what I know, that you (inadvertently) timed the nap you monitored to get you right into REM sleep. I don't think this provides you with good information about your nighttime sleep, though.

Also, what Timbalion said.

I think the issue with the "accuracy" of CPAP data for periods of four hours or less relates to the same point I was making in my earlier post -- not that the data is not reflective of the events during that period of sleep, but that a period of sleep of less than four hours is not reflective of the total sleep pattern for an individual.

It isn't that the data is "inaccurate," per se, but that it is not useful for extrapolation.

However, for periods of four hours or more (and the cut-off point is arbitrary, there), patterns which are more amenable to extrapolation begin to emerge.

Analogy: Person 1: this mutual fund is the best-performing in its class! Person 2: yes, but your sampling period is only 3 months! You need to make choices based on much longer sampling periods -- how would this fund [or this strategy] perform over a 3-5 year period?

timbalionguy, thanks for reminding me. The averages in calculating the entire day. I'll have to go back and see if I can determine how the AHI was calculated for that 25 minute segment.

The Encore Report separates this 25 minute period from the prior night and the calculations to the right of flags pertain only to that time period. I'll look at it again, though.

Your right about talking with the Doctor. I don't claim to be a Mind Reader, but the Sleep Tech seemed quite persistent about me having a talk with the Doc. Sleep Tech's usually know the problem face value but can't say a thing

Congrats on the Atkins! I think it's absolutely necessary to do some time of diet supplemental to the Sleep Therapy. I want the weight off and I want it off now!!

Thanks,

SG

Hi MoneyGal,

I suspect, from what I know, that you (inadvertently) timed the nap you monitored to get you right into REM sleep.

I'm mimicking a Multiple Sleep Latency Test. Taking a nap and observing Apnea, I'm trying to discern if sustained Apnea within the last 10 or so minutes of a nap indicates REM abnormality.

For the sustained Apnea that was recorded, I strongly believe I was in REM prematurely, indicating Narcolepsy. However, Apnea woke me up, I was aware of it. So perhaps, I wasn't in as deep of sleep as I thought.

Though, point being! You may not have many apnea, but if the time of not breathing is lengthy, damage is done!!

I told a Sleep Tech how I always pay attention to the 'Avg time in Apnea per Day' metric. He told me, it doesn't mean anything. That when you take your mask, the blower still is running and it skews results.

That's why I took the Sleep Study. The Encore Reports are great for relating your results to how you feel. But, are they accurate?? The relationship with the Sleep Doc and Sleep Study are vital to get 'hands on' recovery.

Thanks,

SG

Hello, I have been diagnosed with Narcolepsy and Severe OSA. I would warn you that the symptoms of Narcolepsy, with the exception of cataplexy, are identical to the symptoms you'd have if you were sleep deprived. It will show up as a Narcolepsy pattern on an MSLT if you are sleep deprived and this is why they usually want you to stay overnight before the MSLT.

There are multiple variables in all of this. OSA might not be the only issue that is keeping you from getting proper sleep. Medications, sinus congestion, noise, light, anxiety, etc ... could keep you from getting the sleep you need, making you sleep deprived. As someone else mentioned mouth breathing with a nasal mask can be a problem too. When did you start the Provigil? That could be part of the problem. I have tried provigil and found it was too stimulating. A half pill kept me awake for over 40 hours. That's just one possibility of many. Since you have OSA, the only way to really be certain you have Narcolepsy is if you have cataplexy. If you've never had cataplexy, I'd work harder at getting the pap machine working well as well as eliminating other reasons you might not be getting the proper sleep at night.

Being able to fall asleep after meds doesn't necessarily indicate narcolepsy (an MSLT does that, as you say), but meds, such as coffee, can do a number on the effectiveness of sleep, and I'm guessing that could show up as apneas. (Is that usage of the plural OK? I hope so.) Sounds to me like you need to be a really squeaky wheel until you get the right grease. No meds? Different meds? Different dose? Different something else? A systematic, scientific approach in testing and trying changes one at a time can be an important gameplan until the right combination of things align.

It is good you are thinking, examining, questioning, contemplating, etc. Teamwork with the right combination of medical people may be what it is all about. Be vocal in a way that motivates everyone around you to keep at it while you keep involved. Not all of us can get rid of all daytime sleepiness. But it is still important to keep trying things, and every little bit of improvement helps. It's good you are keeping up that fight.

Although I can't say I agree with everything said in the interview at the following link, or even the majority of it, I still found some of the stuff mentioned about fibro and chronic fatigue interesting as food for thought (I think the MP3 may disappear soon, though):

http://files.me.com/sypark/iimej9.mp3

SuperGeeky wrote:...awaiting Sleep Study Results I took this past Sunday...

Post results when you get them, we're all curious!