Authenticity,  Chronic Illness,  Community,  Epilepsy,  Health,  learning,  Self Awareness

A walk in my seizures

Recently I had an asthma attack that melted into syncope. During that episode my oxygen dropped enough that I felt extremely light headed and I had a cluster of seizures. While I laid on the couch I wondered to myself “how would I describe this sensation? Like my usual seizures, I sometimes struggle to speak afterward. So I had a lot of quiet time to just -think-. In the months I have been aware of my seizures, I haven’t spent much time feeling afraid of them. They aren’t the hard part… feeling understood and misunderstood is the hard part. Because of this, I decided I want to share a glimpse inside my personal experience; my awareness and technical terminology is still growing, so I’m going to describe this in my own language.

I have epilepsy; specifically I have right frontal lobe (RFL), and right temporal lobe seizures (RTL) seizures, with secondary generalize seizures. With RFL, the seizure comes on above my eyes, tingling. Sometimes I feel a jolt on my ride side, like a punch to my head, neck, sometimes shoulder and hip (but without the pain). With the RTL seizures I feel my head push backward and the room spins, I fade out of consciousness, but I am aware of myself.

 

 

I do not convulse, but I jerk sometimes. The feeling in my brain is something like this… I am going along on my train of thought, then suddenly everything around me vanishes. I feel like I’m falling through my brain. Usually I cannot remember what I was thinking about, or what was going on around me. I only experience partial seizures, so I do not forget everything… I am not completely confused. What I’m missing from memory depends on the seizure’s location and if I have a secondary generalized seizure.

After my seizures my speech returns slowly, often slurring at first. My brain fog is intense and I feel weak all over. Sometimes I do not feel like I can move. My recovery time after a seizure spans 30 minutes to 3 days. After a seizure I have more muted expressions and a softer voice, this is due to low muscle control on my right side. After a seizure I am sometimes not fully aware of myself or my limits, so I take on social outings when I should probably rest (this is tricky, because sometimes I recover in less than an hour, and sometimes it takes days). I have gotten lost while driving near my house, I had to use GPS to get to my destination. After I have a seizure my urgency is gone. If I was tired, frustrated, in a hurry, hungry, etc, those feelings are gone after a seizure.

This isn’t exhaustive, because I have secondary generalized seizures and I haven’t picked them apart yet… and I’m not accounting for symptoms that are my “normal,” but I think it’s enough to create a little awareness. March 26th is Purple Day, a day to raise awareness of Epilepsy. I hope that by sharing some of my story we can help to raise awareness for debilitating conditions like these

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