"Suffering the Slings and Arrows of Outrageous Fortune"

I posted a few months ago about a strange episode that Em had with dilated pupils.

I have noticed her do it a few times since then, although it has not been as obvious or long lasting as it was that first time. On Friday, she did it again and other people witnessed it, so I’d like to think I am not imagining it!

I was kicking myself that I didn’t take a picture or video of her that first time and so, when it happened again on Friday, I got some video over Em’s protestations. I won’t show it here, because I am not sure it really shows what I saw and there is much of Em trying to not be recorded. (I just watched it again – and I vacillate between thinking it is significant and that I am crazy. I think it shows something, but I just don’t know if the doctor will think so.)

Anyway, here is what happened:

We were on our way to church on Friday evening – it was still bright and sunny outside at 6:30 or so. My brother was driving, Em and I were in the back seat: an SUV swerved into our lane and my brother hit the brakes because there was no place for him to go to avoid a collision. It wasn’t that big of a deal, but Em was really freaked out – she was feeling that we narrowly escaped death thanks to her over active adrenal system which frequently gets her worked up over nothing.

We continued on our way; I glanced over at Em and saw that her eyes were dilated again, although it was quite bright in the car. Her eyes did not change as we walked from the  bright out doors into the relatively dim church or when the lights were brighter in the sanctuary. Once we got in, I grabbed my phone and recorded a short video of her eyes. She blinked, held her eyes shut for several seconds and her pupils did not contract or change.

Her eyes remained like this through the service. Once it was over, I shined a bright light in her eyes just to see what would happen and her pupils finally contracted a little. From the time I noticed her eyes were dilated to the time I shined the light in them and they finally contracted, it was probably more than an hour. I am thinking this is some sort of an autonomic reaction – the first time was after seeing an emotional movie and the second time was after a scary incident. I can’t recall what was going on with the other episodes – they were more subtle and quicker to resolve, so I didn’t record them. Furthermore, I could be wrong, but it seems like her eyes are always, or at least often,  more dilated than they should be – relative to everyone else around her. But it is subtle and not so easy to catch – especially when I don’t know exactly what normal is.

So, the eye doctor wanted me to call if she did it again, but, of course, she did it on a holiday weekend evening, so that wasn’t going to happen. We see Brian, our neurology PA next week (supposed to have seen him last week but we had a snow storm and had to reschedule), so I think I will talk to him about it, show him the video and get his thoughts. Then call the eye doctor and see if he wants to see her.

The thing that makes me think I am not making this up is that, yesterday, when we were seeing the GI doctor, he did a double take when he glanced at her eyes. He spent a moment shining the light in her eyes, then moved on – I mean, a GI doctor doesn’t exactly specialize in eyes. But, that double take spoke volumes to me, because that is usually my reaction – something is just not quite right about her eyes.

I don’t think that this eye thing is a big deal – it doesn’t seem to hurt Em in any way, other than give her a bit of a headache and make her a little more sensitive to light than she already is. I would, however, like to have somebody who knows more than myself help us figure out what is going on.

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[Edited to add a slide show of pics from the video I took. If you think you see some murderous thoughts behind those pretty blue eyes, you are correct! Nonetheless, this is evidence for the doctors who are concerned about it!]


Comments on: "Weird Thing, Continued" (9)

  1. Michelle said:

    My daughter does this often. I was told this is a symptom of autonomic dysfunction (dysautonomia). Pupil dilatation is an autonomic response. My daughter has POTS as well as EDS.

    • I really am thinking it is an autonomic reaction – this time it was really clear. But, the first time, it felt more neurological than autonomic, but undoubtedly it is all connected! The eye doctor was curious but not overly concerned when we told him about it. Although, he did make me feel a little dumb for not calling about it the first time it happened – you know how that is, if I had called, I would have felt like I was over reacting, but since I didn’t call, I was in the wrong. I am just glad I have pictures to back up what I am saying! I hate feeling crazy!

  2. Hi Beth, You are not crazy, believe me! I hear this a fair amount, and patients have also sent me pics and videos. Sometimes it is only one pupil, which makes an AWESOME picture. I can tell if it happens to me when I lose focus up close. I also believe it is an over-reaction of the sympathetic nervous system (we all seem to have bursts of that — just ask my hubby!). I’m a HUGE believer in documenting any and all signs (remember the urine pics? fingernails? rashes? flushing? candida on the tongue?). A picture/video speaks volumes for doctors who aren’t there to witness what we see. (BTW, what eye doctor does not check pupillary reactions routinely before dilating the pupils?! OMG, don’t get me started…). Big hug…

    • Thank you for confirming that I am not crazy! I kind of felt bad at the appointment because he made the comment that he wished he had known before the nurse dilated her. (The way they do it, the nurse takes the history, does a vision test and does the eye drops to dilate them, you go out and wait in the waiting room, then when you are dilated, you see the doctor.) But, like you I kind of thought at the time, how is it my fault that you didn’t check before the drops and even if I had mentioned it, would it have changed the process?

      All that being said, he is still SOOOO much better than the last one we had who chided me for having Em on Diamox, told me to go get a second opinion at Denver Children’s Hospital (Why, I do not know since we are in OHIO) and who told me that if the doctors wanted to do a cervical fusion on Em, I should let them, cause it is a harmless surgery!!! Oh, and I was supposed to listen to him because he almost became a neurologist instead of an opthamologist, so he knows this stuff.

      So compared to him, this doctor was quite lovely. 🙂 (The things we endure, huh?)

      Thanks again!

      • The lesser of two evils! I get that, believe me! 😉 A spinal surgeon told me that “once you have a cervical fusion, your life is over”. YIKES. And this was a surgeon! My take home message, was do it only if all other options are exhausted. Also, any time we become ‘inflamed’ for most any reason, we can become sicker. Surgery is one of the most inflammatory things that we can be exposed to, IMHO. Onward, my friend! 😉

  3. Hi. I hope Emily is doing not too bad this week. My son Austin, has these same symptoms for a number of years. You explain it just as I have. And I too wondered if I was imagining it. lol!
    So, we are both o.k. : )
    The part where you speak about stress causing a cascade of issues happens to Austin too. It really frustrates him as he wants to accomplish something but his body betrays him with adrenalin rushes, and accompanying side effects. Austin has had dilated eyes daily, all day, on a regular basis too. Sometimes with one eye being too large and the other normal. Not reacting to light changes, or at least very little.
    I wish I knew the mechanism!
    And I wish I knew where to take him.
    I am hoping there is a lecture that might point us in the right direction at the conference this summer.
    Austin and I wish you both the best,

    • Terri,
      It is weird, isn’t it? And it is so nice to be validated so you know you aren’t crazy! I too wish I knew exactly what is going on – suspicions are fine, but it would be great if a doctor somewhere could tell us exactly what is happening! The geneticist is sending us to Cardiology and noted Em’s adrenal overreactions, anxiety, etc in addition to her orthostatic intolerance to try to point them in the right direction when we eventually get to them. He feels a beta blocker might help – I am a little ambivalent (although I know beta blockers can be great and very effective) because I think it may not be so simple, but am willing to hear them out.

      So, you might try a cardiologist who knows about autonomic dysfunction. Also, we are talking to neurology and the eye doctor about her eyes. It is so hard when you just don’t know where to go for help – and that is everyday with EDS!

      Hope you and Austin are doing well today! Thanks so much for commenting!


  4. Hi there, Thank you for this post. I have never come across someone else who also has dilated pupils like me (I have Ehlers-Danlos Syndrome type 3 hypermobility and Rheumatoid Arthritis). My family has always commented on the size of my pupils and men don’t always get the message that I’m not interested as my pupils are dilated most of the time! I have been to the neurologist recently about something else (migraines and numbness) but didn’t even think to mention the dilated pupils but will do next time. Thank you again.

    • It is an odd thing, isn’t it? I am pretty sure it is an autonomic thing, but no one can really give us an answer. Keeping this blog, and posting about the sometimes odd things I do, is for exactly this reason… When someone like you reads a post and can relate, it helps everyone.

      Hope you get some answers – if you do, I would love to hear back from you!

      Good luck!

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