Hi, all. I'm a first-year college student going to school about 90 minutes away from home. I have had four seizures in the last four months, which is not at all typical for me. Typically, I have about 1-2 seizures a year and that’s all. I had a stress-induced seizure in May, and then I had two simple partial tonics out of nowhere in August. I had a simple partial seizure by myself in my dorm my second week at school and had to call campus emergency. At the time, I was weaning off Keppra and experiencing stress, which I thought to be the cause. To be on the safe side, I was transported by ambulance to the hospital. They ran blood tests and found out my protein and sodium levels were abnormally low. I currently take Tegretol and Onfi, and I am doing my best to up my protein and sodium levels. Despite this, I am persistently worried that I will have another seizure somewhere on campus.
Additionally, I experience somatosensory auras in my hand daily. I would describe the sensation as an electric shock down my arm and through my wrist/fingers. Occasionally, I get sporadic pain and tingling in the same area. In the last month, I have been experiencing muscle twitches and ticks that may be myoclonic jerks. I get spasms, jerks, and twitches in my arms, legs, fingers, toes, and face/neck. It’s distressing to an extent that I come home every weekend because I am scared to have another seizure at school. With my seizures, I usually get auras every day for a week or two until I have a seizure. As a result, I get little to no warning when I do have a seizure and have about twenty seconds to explain to someone before I can’t talk anymore.
It’s such a frustrating and humiliating experience, losing control of your body. A panic attack is one thing. It’s nothing. I can have those, and no one notices, but a seizure? There is no way of stopping them, and it’s maddening. My biggest fear is to have a seizure in front of an audience, like at the dining hall or in a classroom. I come home every weekend because I don’t trust anyone at school except my roommate.
The biggest issue now is uncertainty. I’ve had four seizures in the last year, and my last one was abnormal. My vision blurred, and although I could still hear, I came the closest I’d ever been to blacking out. I got black spots in my vision and it felt like I may die. I don’t know what to expect anymore, and it’s stressing me out.
As of September, I have failed two medications. I am having several procedures done in the next few weeks, like an MRI, EEG, ambulatory EEG, and a PET scan. Over my Christmas break, I am scheduled to be admitted to the hospital for a week. During this week, I will be hooked up to electrodes, stop taking my meds and a seizure will be induced. As a result, the doctors should be able to tell which regions of my brain the seizures are coming from so that I can be scheduled for surgery.
For now, times are rough, and any advice would be appreciated.