K has been struggling quite a bit lately and we are feeling a bit helpless. She reports symptoms to me so often and all I can really say is, “Okay, I’ll make a note of it.” and send her to rest and hope it gets better, unless it is an easy fix like a small headache. She’s suffering and I have no way to make it better, which is incredibly difficult as a parent, so in hopes of changing that I am sharing her symptoms in case anyone in our circles have dealt with something similar or in case it gives someone a light-bulb moment.
- Heavy eyelids (sometimes preceding nystagmus, sometimes not)
- Visual disturbances (wiggling vision: where everything is wavy/squiggly; vibrating vision: where everything is subtly shaking; and distortions)
- GI upset
- hot/cold flashes
- feeling like she is out of it or sedated
- trouble keeping eyes focused
- dilated pupils (though they are responsive if you shine a light directly at them)
- nystagmus (both briefly, and episodes where it lasts for hours; this causes “jerking” vision, which is different than the kinds mentioned above)
So these things are happening, in differing combinations at different times, without any triggers that we can parse out…and then there are the longer episodes that are occurring every 10-11 days, which vary in symptomology, except for the nystagmus which is the constant there so far. Sometimes she is okay and sometimes she is not, and we can’t predict how things will be from moment to moment.
She’s had a quick MRI that was apparently clear and an EEG that did not show and seizure activity (but that only speaks to that period of 20 minutes or so). To my knowledge, the metabolic labs that the ER has taken have come back clear. She’s supposed to be getting a 23 hr EEG, but the orders for that seem to be stuck in as holding pattern. She had a sleep study recently, but I don’t have results for that either.
Here is a video of her nystagmus (if you watch the veins on the eyeball, you can see how it is rotating on its own):
Of course, we are in contact with her doctors and crowd-sourcing is not a substitute for that, but I’d love input from parents or patients who made have experienced something similar and what, if anything, helped.
August 6, 2017 at 4:08 pm
That sounds to me like dysautonomia. When I was around K’s age I started to have the symptoms you listed minus the eye movement and dilated pupils, I was also passing out in dance class but once I quit dancing I quit passing out. It took until I was 16 to be diagnosed with Ehlers Danlos Syndrome and 19 with dysautonomia, together they have caused GI dysmotility and intestinal failure.
Unfortunately puberty and dysautonomia are not friends, as an adult, progesterone is an important part of my dysautonomia management because even now periods make me flare. I’m fortunate to still be seen at my local children’s hospital where a GYN is part of the complex primary care clinic. For me the two big other parts of my dysautonomia treatment are hydration and exercise. As a teenager I guzzled gatorade to help minimize my symptoms, later as my motility worsened I switched to weekly then twice weekly then three times a week saline infusions, now the extra fluid I need is worked into my daily IV nutrition. There is a special exercise protocol for people with POTS (which I don’t have) that I have found helpful with modifications for my energy level and joint protection. The original program starts with 30 minutes of cardio on a recumbent bike or swimming three times a week and weight training two days a week and intensifies from there, I try to do 10 to 15 minutes a day on a bike or a half hour walk daily plus some core strengthening exercises a few times a week, it also helps with my GI motility.
I’m so sorry that K and your family have to deal with so much, it’s so unfair. Feel free to email me with any questions.
August 6, 2017 at 5:35 pm
Quite a few of those symptoms could fall under a migraine diagnosis. My six children and I , all who get migraines, and among them, we have just about all of those symptoms, which is to say, migraines aren’t the same for everyone. Given K’s history, I might be way off base, but puberty can be time for migraines to reappear or to intensify. Some of my six and I ( not all, unfortunately) really benefit from SSRI medications. It might be a long shot but consider it for what it’s worth. Best thoughts for K. I’m sorry life has to be so hard for her.
August 6, 2017 at 5:52 pm
Thanks, TJ. She’s on Topamax and has the dosage increased once already because there is some thought that it is migraine related. My big question with migraines is do they typically present with one of these symptoms at a time and not progress to headache or something more cohesive? I can see how her longer episodes could be migraine, but the hot flashes alone or the nystagmus that lasts for only 30 seconds or a hot flash…can those also be “migraines” all on their own?
August 9, 2017 at 7:19 pm
My husband had migraines (food & dehydration triggers) and for him, the Auras are worse than the actual headaches. I’m so sorry you are battling again.
August 6, 2017 at 5:44 pm
I wondered about migraines. Ticks all your boxes. I’m sorry this has become a thing and hope she is better soon.
August 7, 2017 at 11:36 pm
In response to your query re migraines – I can get the typical migraine aura, and fuzzy vision without a headache. Leaves me feeling slightly “out of it” if I cant nap my way through it (difficult with a full time job). Other than that, I have nothing – sorry!
August 8, 2017 at 9:37 am
What types of things is she doing immediately before some of the symptoms? How’s her eating? What food groups are missing? Have they checked B12, D, etc.?
August 8, 2017 at 9:51 am
She’s is mostly tube fed so her formula covers her nutritional needs, but eats some by mouth for pleasure. It varies; reading, drawing, talking to friends, watching videos…no consistent triggers for anything. Though, vertical lines cause visual disturbances and flashing lights have triggered headaches, they come on without anything like that, too.
August 8, 2017 at 11:48 am
i will say it sounds like seizures but as a parent of a child with epilepsy that is where my thoughts go. i hope its not and that you find answers soon. even with a clear eeg it doesnt rule seizures out persay either
August 16, 2017 at 3:05 pm
No specific advice, but have you heard of the app Flaredown? It’s AWESOME for tracking one’s health and finding patterns you might not see otherwise. It’s free, too!
Thinking of you guys!
August 16, 2017 at 3:07 pm
Thanks! I’ll check it out!