Tracking for Narcolepsy/Cataplexy

Hi - I’m new to this site, and not sure where to begin! My son has narcolepsy/cataplexy and is to keen to manage his condition as best he can.
I’m interested in setting up a project to see how wearable tracking devices could help manage the symptoms of narcolepsy.
Sleep (REM, light, deep, awake) needs to be accurate.
Body temperature changes just before sleep/wake state changes - we need to monitor body temperature but also alert the individual of the temperature change and impending sleep attack. We would look at breathing/behaviour/temperature modifications to see if they could more efficiently manage the sleep attack.

So am putting it out there - any help/advice/suggestions etc on the tracking/body temperature alert would be great.
So far - I’ve looked at ibuttons as being the best for temperature tracking - but I don’t know whether this could work to enable the temperature change alert.

Hi Jacky, That’s an important problem and an interesting suggested approach. We’re talking about it here. One of our QS colleagues, Azure Grant, recently posted about using smart buttons & temperature tracking for understanding ovulatory cycles, and she’s going to think about your question and try to post something in the next few days.

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Brilliant - thank you!

Hi Jacky, My gold standard for sleep tracking was the myZeo sleep monitor. It was comfortable enough to be worn at night or potentially during the day. I used a bedside version, which includes the ability to access more detailed information on your brainwave patterns (I did not get into this detail for my measurements). They also had a mobile version which may meet your requirements.
Are there other signals of impending attack like head motion or blinking (I am thinking about the driving monitors that were supposed to signal if you were falling asleep at the wheel).
Best wishes.

As far as I’m aware (and I’m not a medic) temperature is the best daytime sleep attack predictor.

Core Body and Skin Temperature in Type 1 Narcolepsy in Daily Life; Effects of Sodium Oxybate and Prediction of Sleep Attacks

The Predictive Value of Temperature Changes on the Onset of Daytime Naps - figure 3
highlights the onset and continuation of temperature increases from 5 mins before a sleep attack.

This was the research I was reading that got me wondering whether we could look at rigging something up now!

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Hi Jacky, your idea is an insightful & interesting one. iButtons are great for both resolution and precision, but I don’t know of a way to continuously stream the data, or to be able to attach it to an alarm. I’m still looking to see what device(s) seem to be the best bet, but here’s what I know so far, and I will update this thread as I find out more. Let me know if you have any more questions.

-A device that will send an alarm to your (phone/computer) when temperature it sense rises above a user-specified set point seems best. This would be potentially useful if you can first do some beta testing with ibuttons to see if you can characterize the temperature rise your son experiences with an episode. It probably won’t be exactly like the one shown in the paper, as body temperature fluctuations can differ significantly between people. Most research articles will show you the averages- not the individual profiles. I am still looking for an alarm system with < .5 degree accuracy (most seem to only do about a degree).

-As you know, the most important thing when picking out iButtons or an alarm system would be the sensitivity and accuracy of the temperature sensor (as the entire range of body temperature fluctuation is only a couple of degrees, precision to the 10th or more of a degree is important). It will be more expensive, but it’s necessary to detect the wake to sleep transition.

Based on the paper you found, and the other ~10 papers on the topic I am seeing, both rising temperature and rate of temperature change might be useful places to start looking for precise trends. Do you have any temperature data yet that you have looked at? I’m not an expert data scientist, but I do have some experience with temperature and sleep data and would be happy to take a look if you are trying to identify features you might be able to use to predict an episode.

As OP_Eng mentioned, devices like the smart cap claim to be able to detect when the user is nodding off with small EEG sensors. I don’t know how accurate it is but it may be worth a try. The other truck driver devices seem to measure things like head tilt (with mixed reviews). It might be a simpler place to start.

Would it be crazy to connect the iButton to a tiny board with USB and LED display? Would take some rigging, but the whole package would not be very big.

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Hi Azure - it wasn’t my idea - it was suggested in the paper! But I agree it’s a good idea.

We haven’t tracked any data yet. I agree that we’ll need to look at his individual patterns, but didn’t want to start tracking if I wasn’t going to be able to use the information to trigger an alarm. I don’t want my son to start worrying about his temperature.

I’m not sure if the apple watch is already able to do this - but again it’s the temperature change alarm that’s likely to be missing.

The iButtons don’t continuously stream data (as far as I know), so an additional power source would also be necessary. If friends in engineering were interested in taking on the project, it seems like it could be an important tool - but maybe not quite so easy to execute.

Have you looked into TinyCircuits. The Temperature Sensor is rated at 0.1 deg C resolution for human body temperature measurements (Application Note Chapter 5). There is also a DIY Fitbit article that talks about setting up bluetooth and building a phone app to display the data. You could use a temperature sensor instead of the accelerometer. Adding an alarm to the app should be straightforward.
You will want to separate the temperature sensor from the other electronics to avoid self heating errors.


If it is too off-topic from the original question, I apologize and can certainly start a new thread. However, as mynquestion is related to narcolepsy tracking, I figured I’d put it here.

I have recently been searching for a nap-tracking android app for narcolepsy. I have found and used several sleep tracking apps, but none of them seem to work for daytime nap tracking.

In short, I’d like to be able to push a button or record an entry when I wake-up from a daytime nap without having to record or press a button to initiate the nap (because they are mostly unintentional/unplanned).

Any one know of one?

You might try a customizable self-tracking app that you could setup for this purpose without much trouble. There are a few good ones listed in this discussion:

Please excuse my total lack of understanding - but ‘self tracking’ in rtracker means it doesn’t connect to a fitbit/wearable device - is that right?
Is there a way of getting raw data out of a tracking device? I’ve got a jawbone up3 which tracks temperature and sleep, but their app doesn’t show the temperature data.

Right, it’s manual rather than automatic tracking.

There is an official Jawbone UP API, but that doesn’t include temperature data, either. Might not be accurate enough to be useful on its own anyway…

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Hi Guy n girl’s
We I was first diagnosed with Narcolepsy I had a similar thought as to tracking and notification of pending attack.

We (narcoleptics) need to start an open source project maybe attend a hackothon or 3.

The the is out there and so is the help.
Most off the shelf stuff I can find either costs too much or doesn’t register all what we need.

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