If you follow my blog or follow me on Twitter, you may have read about my recent tonic clonic seizure (grand mal). And the number one question I have gotten is, "What does it feel like?" followed by "Why?" So I thought I'd take the time to explain a little bit about my specific epileptic syndrome because there is a lot of misunderstanding about seizures out there. Some people read about febrile seizures (from fever) or seizures from a specific cause like tumor, drugs, head trauma, et cetera.. and don't understand truly what it means to have epilepsy. So I will attempt to explain for you.
As a child, I was frequently reminded to "PAY ATTENTION." I was always considered to be clumsy. And it was the family joke that I used to virtually walk into walls and drop nearly everything I picked up. The earliest incident I can remember was when I was school aged and I was at the breakfast table, eating cereal. I remember eating and then all of a sudden, my cereal was everywhere and my hand was in my bowl.
Once I hit puberty, I would wake up and drop my juice or breakfast. I would be tired all of the time. My teachers told my parents that I didn't pay attention in class. And all of a sudden, everyone noticed I was jerking with my head and hands when I was tired (usually the morning). My parents became concerned. This new jerking scared them. They took me to my primary care doc who questioned whether or not I had epilepsy. So a few months later, I saw a neurologist, had multiple EEGs - sleep deprived, with strobe lights, MRI, CT, blood work.. yada, yada, yada. The diagnosis: Absence Epilepsy. More specifically:
Childhood Absence Epilepsy that had developed into Juvenille Myoclonic Epilepsy. I was 15. My neurologist said that most of my seizures had been
Absence (staring spells), occuring up to 6 times an hour according to my EEG. But that I had frequent
myoclonic seizures (short jerks of the hands and head) that occured predominately when I was sleep deprived. I darn near jumped off the table at the beginning of my EEG, I had so many.
As life went on, I noticed that every time I was tired, stressed out, was hormonal, emotional, or sick I had an increase in seizure activity. Unfortunately for me, I never know when I've had an Absence seizure. Apparently, my eyes flutter for a second or two; I stop talking; and then I resume 5 seconds later as though nothing had happened. But when I have myoclonic seizures, I realize afterward that I've had one. People are staring at me and whatever happened to be in my hands is now all over my shirt or on the floor. If I happen to be on stairs, I may be at the bottom of the stairs. One time during college, I had been up most of the night studying for my first ever college exam. I woke up; took a shower; got ready as usual; cleaned my ear with a cotton swab; had a seizure; and punctured my eardrum with the swab. My eardrum had to be worked on and I still don't hear very well out of that ear. My seizures make me extremely tired. And if I've had a lot of seizure activity, I can become confused or unable to concentrate.
My original neurologist had always warned that my seizures could progress at any time. That about 50% of patients with JME end up having
tonic clonic (grand mal) seizures. And 3 weeks ago, my primary doc inadvertently put me on a medication that lowered my seizure threshold and WHAM! I had a tonic clonic seizure. The last thing I remember before I had the seizure was that I was really tired. I sat on the couch to talk to my husband about our son's visit with his new developmental pediatrician. And after the seizure I remember someone yelling my name and I opened my eyes the way one does when they are first waking up. And then I nearly jumped out of my skin out of fright because some guy I didn't recognize was standing over me. I looked down to see blood all over my shirt. I had bitten my tongue. The paramedics put me on a stretcher and started asking questions. I was so confused. My head hurt like crazy. I didn't know what day it was. I had no idea what had happened. I recognized my family, but couldn't remember their names. When I tried to talk, I felt like I was just awakened out of a deep, deep sleep. I realized I wet my own pants.
My husband told me that when I had the seizure, I let out a scream. He said I sat up in a weird posture and then my body was convulsing, my eyes closed. I wet my pants and didn't respond to him. Then I was breathing very heavily and labored and then fell back as though I was sound asleep. He couldn't wake me. It scared him and my kids. For days afterward, my tongue was so lacerated it hurt to talk, eat, drink.. My muscles were REALLY sore - as though out of the blue, I decided to enter a decathlon without training first. The muscle soreness was horrible. I spent the next couple of days sleeping. I felt exhausted. I slept nearly 18 hrs a day for about 2 days.
2 wks after the seizure and I feel great. I am off the medication that lowered my seizure threshold. I am on medication that will help prevent all three seizure types that I have. I am getting plenty of rest and picking up the knitting needles when I feel emotional or stressed. I cannot drive now for up to 6 months post seizure. This is for the safety of myself and everyone else on the road. (State Law) And I've gotta say, I don't feel ready to be in the car. The new meds are making me tired and a little loopy. PLUS, I'm terrified that I might have a seizure in the car. The neurologist says that although my primary seizures are absence and myoclonic in nature, I will also have tonic clonic seizures, though thankfully in my specific epilepsy, they are few and far between (we're talking a couple a decade, and that's if not properly medicated to prevent them). So, I have an extremely low risk of having another tonic clonic seizure soon.
Just a few things to remember if someone around you is having a tonic clonic seizure:
- DO NOT put anything in their mouth. They may bite you or bite off whatever you stick in there and then choke.
- It's impossible to swallow one's tongue, thanks to the frenulum linguae.
- Place the person who is having the convulsion on their side on the floor away from furniture.
- The person having the seizure will likely be disoriented and not remember what happened. This is normal. After several minutes, they will start to become more cohesive.
Epilepsy may seem scary - most of all to those around the epileptic. But with proper medical treatment, it can, in many cases be managed.
What Is It Like to Have Seizures?
