"Suffering the Slings and Arrows of Outrageous Fortune"

Weird Thing

So, I need to record this kind of Weird Thing just so I don’t forget about it. I don’t even know if it is important in any way or not, or if it could be helpful for anyone else, but this is one reason I blog, so here goes…

Em and I went to see Les Mis this afternoon – we seem to be between viruses in our house today, stomach virus last week and a cold that we will probably all have this week, so it seemed like a Carpe Diem moment. We have been wanting to go forever; no self respecting theatre nerd/ musical fan could not see it and Em has a lofty goal to audition when our local theatre does Les Mis this fall. (That announcement is fodder for completely different post) So, obviously, we had to go before it was no longer in theaters. Going to a movie is always kind of a big deal for her- the headache, light and noise sensitivity and fatigue are always an issue, but sometimes it is worth the effort.

Anyway, when the movie was over, the lights came up and the credits were rolling, Em complained of a terrible headache – nothing new in and of itself. Although, her complaining about it, was a little out of the ordinary. Then, she kept saying that her temple, down her cheek felt wet and cold, but there was nothing there – it was totally dry. And her occipital region around to behind her ears felt extremely tight. On the way to the car she complained about feeling very dizzy. She didn’t think it was muscular – there are definitely muscular issues with her neck, so she knows the difference between that and pressure and whatever else goes on.

We stopped for a bite to eat on the way home and when I got to the table with our food and sat down to dish about the movie, I noticed that her eyes were very dilated… Almost as dilated as when the eye doctor dilates them for an exam. Now, it wasn’t terribly bright where we were sitting but it was not dim either – she was even facing the light behind and above me. And, they remained dilated the same amount the whole time we sat there – maybe 20 minutes.  (It is probably worth mentioning that in the 2 years she has been dealing with the neurological symptoms, I have never noticed her eyes dilated abnormally.)

By the time we got home, her eyes were normal, she wasn’t as dizzy as before and her headache was less noticeable – although she still complained of the tightness around her head.

My theory – I always have a theory – is that the position she was holding her neck in while watching the movie messed with the CSF flow and resulted in the unusual signs/ symptoms. And, on the way home, she relaxed and everything went ‘back to normal’. I am probably not explaining that very well, but it is late and that is the best I can do at the moment.

By all means, go see Les Mis – it is fantastic. And, if you have any input on the weird symptoms Em displayed tonight, I would love to hear it!


Comments on: "Weird Thing" (8)

  1. Melody Barker said:

    Has she had am MRI to test for chiari?


    Sent from my iPhone

    • Yes, she has. No chiari according to the radiologist, but, I always maintained that her hind brain is clearly crowded and her brain stem was at an angle. Apparently, my opinion matters less than the radiologist that never met her and knows nothing about her medical history. 🙂 That was a couple years ago, before she started on Diamox, which managed her symptoms very well. This was a weird thing that we really haven’t seen before – especially the dilated eyes. I will be keeping a close eye on her. And keeping a record of it, as well, so we can fill the neurologist in on it when we see him next. I am regretting not snapping a picture of it while it was happening, but will remember to do so if it happens again.

      Thanks for commenting and pointing that out, Melody. The symptoms I described should absolutely be checked out in a person who has not had an MRI, something I probably should have mentioned in my post. I feel comfortable with a wait-and-see approach right now, since the symptoms resolved, but will definitely get in touch with the doctor if the symptoms return.)

  2. Jeshyr said:

    What an unpleasant experience! Your theory sounds entirely plausible to my non-medically-trained self. Go see another long movie and find out if it happens again??

    Les Miserables is definitely on my list of must-see movies! In fact, right at the top of the list. I saw it when the musical first came to Melbourne in 1989 at the age of 14 and cried so much at the ending that Mum had to shush me because the actors were glancing at me during the curtain calls!! I adore pretty much all the musicals I’ve ever heard/seen, so the movie will surely be a treat 🙂

    • We are beyond excitement that our local theatre has the rights to perform Les Mis – apparently the rights are just being granted, so our theatre will be among the first amateur theatres to perform it. We both enjoyed the movie and I bet, you will too. Be warned that it is a bit different than the stage version but it is good – and some parts the movie is able to do better than the play, just because it is a different medium.

      Regarding the medical stuff – she has been to the occasional movie and this is the first time it has happened, so there is no guarantee that it will happen again. Of course, she casually mentioned that she wouldn’t mind seeing it again, so she would probably be up for the experiment!

  3. I personally have no explanation but it also happens to my daughter. It’s not a constant thing, but happens a couple times a year. She just seems to always come back around so nothing is taken seriously by the docs. They’re not much help anyway. So frustrated! :/. If you figure something out, please let me know. My daughter has been dx with EDS, POTS, Gastroparesis, they also found an over abundance of mast cells from a colonoscopy biopsy, and last but not least…. recently she has been having glucose issues and is lactose and gluten intolerant.

    • Very interesting…Your daughter sounds so much like mine. Not sure about the gluten intolerance, but it is on the list of things to think about. I am with you about the doctors – if I thought they would have a clue, I would get her an appointment today. But, I know if I brought her in for this, he would shrug his shoulders and just say that my theory is as good as anything. At our next appointment, I will bring it up but that is about all I can do.

      I don’t think it is a big deal, but it is weird…

      Thanks for commenting – if I ever get an answer, I will be sure to share!

  4. Melody Barker said:

    My daughter has EDS and POTS and we have had similar things. Also I have chiari (which affects csf flow) and EDS have had similar things. So not much help but a couple things to watch. Also with chiari bright lights really bother me and the lights and sounds in movies do at times as well.


    • Em is way better since going on Diamox. Before Diamox, there is no way that she could have even gone to a movie. So, between the physical strain and the emotional strain, it could have just been a weird reaction. It will be interesting to see if she ever does this in any other situation.

      It is interesting that others have similar symptoms, which tells me there is something bigger going on.

      I guess I just need to accept that it is a mystery for now!


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