Dystonia, epilepsy or something else?
I gave been having worsening bilateral facial spasms 1-3x per day that last 2-5 minutes. They are preceded by light nausea and stomach gurgling, then left eyelid spasms and closes, followed by right eye closing and down to nostrils flaring and involuntary chin clenching. Sometimes my tongue pushes out of my mouth and spasms for a minute before retracting back into my mouth.
MRI, CT scans are clear. Some slight slowing in right hemisphere in EEG but not epilepsy. I did not respond to Keppra so was weaned off of it. Am now waiting on a more detailed MRI of lower brain and brain stem and an MRA, ordered by my new neurologist at Stanford.
Has anyone experienced anything like this? The doctors are so far puzzled. Thanks.
Hi,
!
First off, I am so sorry you are experiencing these symptoms that have your doctors stumped for the moment. Honestly, I don't have any answers either, nor was I able to dig up conversations in this community dealing with similar issues. However, we do have a sister site dedicated to Epilepsy, which you are welcome to check out -- https://epilepsydisease.com/. Epilepsy and other seizure-type conditions can be incredibly complex to treat, so I hope even though you have not been diagnosed with epilepsy, you find some pertinent information on the site. Specifically, here is some basic information on various conditions that can cause seizures -- https://epilepsydisease.com/syndromes.
I do hope you are able to get that more extensive testing done soon and hopefully, get some answers!
Best, Erin, Team Member.
