There are 42 different types of seizures; the on the floor jerking type, a tonic-clonic or grand mal, is just ONE of those types. Surprised? So was I.
I was very surprised to learn I was having seizures. I was even more surprised, at age 41, to learn I'd been having them for decades.
I was stunned. How could I have had seizures that long, and no one caught it? Not my mother, my brothers, my doctors- and I'd been asking doctors to find what was wrong with me for Years. How did they ALL miss it?
One reason is because we, as a society, are trained to think of all seizures as tonic-clonics. When you say 'seizure', people instantly think of person on the floor, jerking uncontrollably, for several minutes.
One of the types of seizures I have is what is called absence seizures. An absence seizure can last less than one second. One second! All it looks like is that I'm staring off into space. There are no spastic movements with an absence seizure. When I'm having an absence seizure, you can say my name and I won't respond- 'selective hearing', 'wool gathering', 'spaced out' or 'zoned out' are all phrases I've heard related to this. At work, many coworkers just assumed I was doing drugs.
I had migraines for years, and tried everything to treat and prevent them. No doctor ever told me that migraines are co-morbid with seizures.
Sometimes I would wake with a sore jaw, sore face, sores inside my cheeks, or bloody lips. This was because I was having nocturnal seizures, or seizing in my sleep, and my jaw was clenching, I was biting my lips, cheeks, etc. People who have slept in a bed with me have called me an 'active sleeper' and 'a kicker', and mentioned I talk in my sleep; I have slept walk a few times. All those are signs of nocturnal seizures- along with waking with the bed a mess, blanket on floor, nightclothes twisted, and hair looking like it went through a blender. I was told by a dentist I had TMJ, and needed to buy a mouth guard to sleep in so I wouldn't grind my teeth at night; the dentist didn't mention seizures, either.
I've had incontinence for years, just a tiny amount, just enough to bother me. I've done kegels, taken cranberry extracts, drank more water, gone to the bathroom more often, all the things recommended with incontinence. No doctor ever mentioned that incontinence is common with seizures.
Another type of seizure I have is called Simple Partial seizures. A simple partial is where only one side of the brain is affected, and one side of the body. I may drop whatever is in my hand, trip while walking, my finger or hand twitches, my foot jumps. Sometimes I shake from my shoulder up to the top of my head, looking for a second like a dog shaking off water. Lasts a few seconds at most. I always called these 'shivers', my mom called it 'someone walking on my grave'. There is no loss of consciousness with a simple complex- I'm awake and alert, and wondering why I just spilled my drink, again. I've had a lot of cooking accidents over the years, burns and cuts, that never made sense before learning about the seizures.
Simple partial seizures also affect other areas of the brain besides motor functions, leading to: changes in blood pressure, which causes dizziness; bodily functions (always fun when that happens); sensory issues, meaning I will feel bugs crawling on me (which lead to some interesting mental health diagnoses); hear things that are not there (auditory hallucinations; voices, usually sounds like a TV on in the other room I can't quite hear), get a strange taste in my mouth (usually metallic); smell things that are not there (always BAD smells, for whatever reason, like burning rubber or cat pee); and seeing things that are not there (typically manifested for me as 'spots before my eyes'). Also other weird body effects, like saliva suddenly overproducing and pooling my mouth, 'goosebumps', massive sudden sweating in one spot, nausea, vertigo, sudden ice cold hands or feet.
My simple partial seizures originate in my temporal lobe (also called temporal lobe epilepsy), which means they affect my circadian cycle (when I fall asleep, how long I sleep, when I wake) and my emotions. My emotions change often, I have been labeled as 'moody' by most everyone who has ever met me. Doctors labeled me as bipolar. I have lived in fear most of my life; I always assumed it was due to years of abuse, doctors labeled me with PTSD. But even my psychiatrist was baffled at the intense levels of fear, paranoia, delusions, anxiety, and severe depression I was experiencing. We considered the possibility it was schizophrenia, especially when factoring in the hallucinations.
I have had anger issues, and rage outbursts, for years. I never knew why, before learning about seizures in the temporal lobe. I could be absolutely fine one moment, and Hulk the next, over anything, or nothing. This one has caused a lot of pain for loved ones, and destroyed many relationships. I tried so many different therapies and tools to control my anger, none of them ever worked, now I know why. It doesn't undo what's been done, or magically heal old wounds. It does prepare me for the future though; now I know intense sudden anger is an aura, a warning I am about to have a complex seizure.
I have Complex Partial Seizures, which sometimes cause a loss of awareness- for me, though my body carries on with whatever. When I have a complex seizure, I may say or do anything out of character for me, especially things I would not normally say or do. And I will have zero memory of it. I went to a party at a coworker's home once, and passed out (what I now know was a complex seizure; everyone else assumed too much alcohol); at work on Monday, NO ONE would speak to me or even make eye contact. I tried asking people what on earth was wrong, and got strange looks, and no answers. I've lost a lot of friends, and been fired from a lot of jobs, because of "you know, don't act like you don't" reasons... I never knew. I always assumed I just attracted people who flipped out on me for no reason, because I never remembered doing anything wrong.
After a complex seizure, I am exhausted. I sleep, a LOT, and my body hurts.
I'm 42 years old, and for 20 years, every doctor has told me there was nothing wrong with me, all my labs were fine (I have had SO MANY medical tests!), and labeled me a hypochondriac. My family labeled me a hypochondriac and lazy. I've lost count of the number of coworkers and associates who assumed I was a closet alcoholic or junkie (especially when they saw me walk into walls, trip, twitch, stop to think to remember my name or what day it was).
I do not share these labels out of anger or self-shame. I share them for the same reason I wrote this blog- maybe it will resonate with you. Maybe you have been called lazy, a dreamer, clumsy and will read the other symptoms and have an ah-ha moment.
Having epilepsy is a little scary, I admit. You know what's worse? Having it and NOT KNOWING that you are having seizures. Not knowing really messed with my head, on a daily basis.
The depression, feelings of impending doom, paranoia, delusions, and thoughts of suicide that come with Temporal Lobe Epilepsy (TLE) can be *managed* when you know WHY they are happening. I am amazed that I am still alive after decades of crippling depression and the severe, almost daily, thoughts of suicide. Add in the lost jobs, lost friends, and never knowing what the hell was going on with my body, well let's just say I had more than one very close call with the exit option. (see previous post, Staying Alive)
And that's really why I wrote this very intimate glimpse into my life and my body. Undiagnosed epileptics are at an extremely high risk for suicide, and much of that is from the not knowing. If this post saves one life, it would mean the world to me, and I would bare my soul a hundred times over to save them.
Describe your partial seizure
Descriptions and diagnosis of partial seizure
Temporal Lobe Epilepsy symptoms
Auras- list and descriptions of different auras
|I Didn't Know I Was Having Seizures|