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Date of last update: 10/04/2017.

Forum Name: Neurology Topics

Question: Narcolepsy and uneven dilation of pupils

 sealpup80 - Fri Dec 26, 2008 10:11 pm

I was diagnosed with Narcolepsy 2 years ago. Since then I have been working with a sleep specialist and things have been going much better than in the past. I have however been encountering some very distinctive symptoms of "automatic behavior". My partner pays very close attention to what happens on a minute to minute time-frame. We have noticed that when I am about to have a "sleep episode" my pupils will diolate anywhere from 15 min to 30 min before hand. The left will diolate to double the normal size, and the right will decrease in size. The more severe the quicker the episode will come on. Also, we have noticed that if I do not take action after first notice, the frequency of "automatic behavior" is increased. Depending on the size of the pupils we can tell whether or not I will even be able to make it to bed without failing into the behavior pattern. When the behavior is expressed I can only describe it as being "blacked out drunk" I will not remember anything about the episode but videos have proven what happens. I am currently takeing 4.5 mg per dose of Xyrem, and 10 mg as needed of Ritilan. It seems however that when I am extremely tired, even to the point of being over tired the Xyrem has a adverse effect. I will not be able to sleep and the "auto behavior" will soon to follow. At this point, it seems that one of the only ways to tell, is the pupils. Is there any relationship between what I have descibed.
Please note though when I was 9 years old I was hit by a car, a result of an MRI at the time showed a slight hematoma. Since this time several MRI have been done and no signs of it since. Could there be a relationship of the two? Should another MRI be done to see if hemotoma has reoccurred? What are your recommendations about this disease and it adverse effects? Thank you for your time.
 John Kenyon, CNA - Fri Feb 20, 2009 12:10 am

User avatar Hello --

What you describe is not inconsistent with narcolepsy, although these variations are not well recognized in the general population. The random seeming pupilary dilation, followed by "automatic behavior" are consistent for sure, although the pattern of their arrival is unusual.

Cataplexy (loss of muscle control) would account for the pupilary response, and may well be triggered, if this has been noted, by various sorts of emotional states outside the baseline, such as laughing or being upset. This may be followed consistently, in your case, by "microsleep" episodes, during which the subject not only spontaneously goes to sleep, but engages in hypnogogic behavior (somnambulism, "automatic behavior" as in sleepwalking, but brought on by the specific condition). There is usually no recollection at all of what has gone on during the "blackout."

While an early-life head trauma may have somehow contributed to the emergence of this condition, it would likely be impossible to prove and of little value in managing the problem. A sleep study, if you've not had one, would be of great value. If you've had one already, then working on finding a cause (sleep apnea is often the culprit, but you'd likely know this by now), and finding a basis for managing this problem.

I hope this is helfpul. Good luck to you with this, and please follow up with us as needed.

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