Our camping plans are off at least for the time being -- Nastia started experiencing new symptoms related to her seizure disorder. She is having vertigo, nausea and -- the scariest for her -- skewed visuals so that she keeps seeing the world in what I'd describe as an " Alice in Wonderland" way. She kept feeling the room getting smaller and smaller, and then lengthening, and then the photos on the wall were changing shape, and it just got scarier from there. These are signs of a partial complex seizure, and she hasn't had any of these symptoms since she started on topomax almost a year ago. Even then, she mostly exhibited different symptoms - nausea, paralysis, slurred speech. These skewed visuals are new, and it scared her to death. Thankfully, I remembered one of my college roommates, who had epilepsy, having these type of visuals quite often. I knew they were a sign of a seizure, but that they weren't damaging, per se. so I wasn't too scared myself.
When the visuals started, she had difficulty walking and I had to try to keep her in bed, but it scared her so she wants to run...ugh. While I tried to comfort her, my face got ' far away and small', as did my voice, so she got even MORE scared. It resolved itself after about 20 minutes, but I still called the hospital.
We are heading back to her neurologist today. He's concerned because she should not have such extreme symptoms while on such a high dose of the topomax.
If anyone reading this has experience with complex seizure disorders and wants to put me at ease, please do.
I'll post later today or tonight when we learn more.
Awe, poor Nastia! What a horrible and scary thing to experience. Maybe its related to the increase in stress? I don't know much about seizure disorders but perhaps increased stress could trigger an attack? I hope she gets feeling better, poor dear. ♥
ReplyDeleteOH NUTS!!!!
ReplyDeleteI don't have experience with the seizure disorders, but I can't help but think how much this sounds like it's connected to that ever stinking PTSD. I'd be really surprised to hear that isn't what triggered it, at least. Hopefully you can find some better answers than that, though.
Just a weird, off the wall question...how does Nastya do with swimming? Is there any way you could find a private pool (or at least one that isn't crowded with gobs of screaming kids)? We've had great experiences in being able to less go of stress and trauma and just "be" simply by bobbing around in the water. The boyancy of the water is very freeing and relaxing and is great for resetting all the systems. I've found that exceptionally true if we're wearing life jackets and can't touch the bottom of the pool. If she can tolerate that without anxiety, great! Try it. If it is anxiety producing, stay where she can touch and be in control and just walk back and forth across the pool several (many) times. The movement of the water against the body and resistance it provides will have the same immediately calming effect.
Hi, Keri
ReplyDeleteDoes Nast have a seizure disorder on top of a migraine disorder? The Alice in Wonderland type visuals- which I think are actually called that- can be a sign of mirgraines too.
I was going to mention migraines also. My mother and I have them mostly during high stress times. My mother went completely blind with one. I had very bad prisms in the center of my vision that did not go away when I closed my eyes. Any time your vision is effected it can make you so sick.
ReplyDeleteI pray it is a quick and simple fix for her. Sounds like a very scary experience. Praying for you guys!
~Nanette
As a child (7) I had a head injury that gave me nocturnal seizures. As I grew my seizures changed. Eventually they were during the day...always massive migraine, throwing up, loss of muscle control (like a stroke), slurred speech, extensive sleep. Seizures were brought on by stress or pain.
ReplyDeleteAfter I got married my Dr. put me on Lamictal (less chance of spina bifida in children if on this drug)...seizures went away for 5 years. Had 1 child...no health issues.
Then I had a major car accident. Seizures came back...more severe. Dr. suggested (V.N.S--Vagus Nerve Stimulator) because he couldn't put me on anymore meds.
The VNS plus my normal meds worked. It's been 5 years and seizures are gone. I do periodically screw up my words...but that's usually when I'm tired/stressed.
I know of 2 others that had the vns implants put in...it did not work for them.
Prayers for you and yours.
I have a migraine disorder that is accompanied by vagal syncope (which is vertigo and fainting caused by overstimulation of the vagas nerve) and I have a lot of those symptoms when I get a migraine. The floor under my feet feels like a trampoline and turning my head can cause my vison to black out. These symptoms can be terrifying but my neurologist has assured me that they are not dangerous. I wish you and Nast the best in finding a medication that will alleviate her new symptoms.
ReplyDelete