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complex hallucination w/occular migraine?

We are just beginning our journey down the rabbit hole of the medical system and referrals. My son (9) has a family history of migraines on both sides of his family. He sees white flashes of light a few times a day, for a couple os seconds that covers his field of view, and has been for around 6 weeks (last night, it was blue--first time colored). Last night, he also saw a shower of sparks (but he was also about 4 hrs short in sleep). We spent Sat. night in the ER because he had 4 hallucinations over a couple hours, that lasted just a handful of seconds each (when he blinked, they were gone). The grim reaper peeking around a shed, a translucent car speeding by, (both as he was walking home with friends) a spiraling arrow in a box on a computer screen that was in sleep mode, and lightning that only lit up the car window he was looking through on the way to the ER. They did a battery of blood tests, all fine, and a CAT scan, also fine.

So, I keep searching for complex hallucinations and migraines info, and I'm not finding much, except lillipution hallucinations. I am wondering if anyone here has input or reference links.

Last year, he complained of a constant nausea. Went through the cycle of specialists and tests--all negative. I have just learned of abdominal migraines. Maybe?

The plot thickens: His near-sighted vision became blurry a couple of weeks ago, all at once. The Optometrist gave him the green light and glasses, we see the Opthamalogist tommorrow.

I have stumbled accross seizure disorders, eye diseases, visual pathway lesions, a host of occipital lobe conditions, and nothing fits his symptoms well. Because of genetics, I'm leaning toward migraines. He sees the pediatric neurologist in 2 weeks, the longest 2 weeks of my life. . .

  1. LAHoglin - You're in a good place here, because you need to educate yourself about Migraine and this is one of the best places to do it.

    Occular Migraine doesn't actually exist. https://migraine.com/blog/those-ocular-optical-and-ophthalmic-migraines/ Most doctors who use the term actually mean Migraine with aura, but because it isn't an actual medical term, it may mean any number of different things. Speaking a common language when discussing your son's health issues is going to be vital for you for a number of reasons. #1 so you're all on the same page and #2 so you can get a good idea of how much your doctor actually knows about Migraine disease. If he/she is using outdated incorrect terms, do you think they have kept up with the latest and best diagnosis or treatment methods? Just two things to consider.

    I always suggest patients find a specialist to help them with complicated cases. Here is a link I hope will be helpful for you: https://migraine.com/blog/looking-for-a-migraine-specialist/

    There is a type of aura known as Alice in Wonderland Syndrome you might want to look at and consider: https://migraine.com/migraine-basics/migraine-phases/

    There are other reasons for hallucinations like you have described here. Typically Migraine aura won't involve seeing objects like cars that aren't there. More typically they are sparkling lights, blank spots and those types of things. Seeing a person/grim reaper peeking around a corner is not typical.

    I would encourage you to be sure that your son gets the opportunity to see an endocrinologist however. A sleep study might also be helpful. Both are common conditions that can result in hallucinations like you've described. When my thyroid was high with Graves' Disease, I saw a buck deer at the foot of my bed. Sat up and watched it watch me before it walked off and vanished. I saw huge spiders dangling from my ceiling. Saw animals scamper across the yard that weren't there. Crazy stuff that made me think I was going insane. Sane people don't see deer in their bedrooms, right? I was assured that it could be a neurological manifestation of my disease and probably the symptom of extreme sleep deprivation, and to give the treatments a chance to work.

    I still suffer some pretty serious Migraine auras which sometimes resemble stroke, but my treatment for my thyroid condition and lack of sleep that resulted, took care of the hallucinations that had me fearing for my sanity. Those happened about twenty years ago now. Now I have crazy bad auras with my Migraines, but I know what to expect and how to handle them when they occur.

    Please try to remember too, that testing like MRI and CT scans are done to rule out structural issues that could contribute to the symptoms. Having a negative result isn't necessarily a bad thing, it's just frustrating.

    Will they be doing an EEG on him as well? How about a sleep study?

    Please keep connected with us here and let us know how things go. We'd like to help if we can. We don't always have all the answers ourselves, but that's the beauty of having all these fabulous connections - we can usually find someone else who does have an answer 😀

    Hang in there mom - you're being an awesome mom for your child <3

    ~Ellen

    1. Thanks Ellen, you've been very helpful!
      Yesterday, my son told me he was writing some of his letters and numbers reversed at times, his whole body was trembling (it sounded like he could just be shuddering--I've done that forever) which was new, some different visual anomalies. . . So in mommy-freakout mode, I took him to the ER in the morning.

      Essentially, the ER Doc consulted with the Peds. Neurologist via phone. In his estimation there was nothing going on that was going to cause brain damage (no immediate need for tests). He thinks it's all migraine related and he prescribe Depakote. Yaaaaa, I don't think so. Not right now, for sure. We see him in person short of a couple of weeks, I don't know what he'll order. Others' opinions were that he'd probably order an MRI and EEG. My former Dr. (retired 🙁 ) also suggested a sleep study.

      For the first time in a long time, my son had no food in the A.M. We left the ER around 11:30, and he saw a bit of a flash on the fluorescent light. He's usually seen a flash (lately anyway) before then. About an hour after some bunny grahams, and while he was eating lunch, he started getting a lot of flashes. They diminished in the afternoon. Its too early to tell, but I hope I am on the path to find a trigger 😀

      Again, THANK YOU! And thanks for the leads 😀

      --Laura

      1. Hi Laura,

        How about migraine triggers? Have you been able to determine what your son's may be? In order to do that the best tool is a migraine journal. When I kept a migraine diary for my son, he was about 9, I was able to determine that chocolate, dehydration and changes in his sleep pattern were strong triggers and still are today he is now 18 years-old. We have the Migraine Meter that can be a useful app; https://migraine.com/migraine-meter/. If that doesn't work there are many more out there to try.

        The other thing I thought of was cyclic vomiting syndrome, CVS. Here is a site with information on this condition; http://cvsaonline.org/.

        Nancy

        1. The bunny grahams could be a food trigger. I just realized today that Cheez Its are a trigger for me. That aged cheese.

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