I’ve lost count of the number of people who have told me they wish they had Epilepsy. Why would anyone say that? Who would want this?
The same people who say, “you’re lucky; all you have to do is take a pill.”
There are people who believe I take Keppra (an AED or Anti-Epileptic Drug) and all seizure activity instantly stops. I just go about my life doing what I want, when I want; like it doesn’t exist. They believe it doesn’t inhibit or change anything. I try not to get angry but sometimes I can’t help it. I’m human with an incurable, debilitating and life limiting monster living in the right side of my brain.
While I do take an AED the restrictions are insurmountable. While it does help keep them at bay it is not a guarantee. Break through seizures are immanent for me. I have been tonic-clonic seizure free for 2 years. However, I still have refractory/intractable epilepsy. This means I have other seizure types that medicine can’t control. And, these can secondarily generalize into a tonic-clonic seizure at any time.
Almost anything can be a trigger. Each epileptic has different triggers and thresholds. I have right temporal lobe epilepsy with visual disturbance. I do not have photosensitive epilepsy but have the same triggers and restrictions. To give a non-epileptic an idea of what it’s like to be me these are my triggers, restrictions and how my seizure’s manifest.
Stimulants (too many carbs, caffeine, sugar, etc…)
Virus’s and other illnesses
Anything that makes my brain lose spatial awareness
Dimly lit rooms
T.V. in the dark
Movies in the dark
Water (moving or sun shimmering on it)
Moving backwards (in a car, walking, etc…)
Showering alone (when my husband goes out of town for several days I have to wait until he gets home to shower)
Cooking alone (when we know my husband is going to be out of town we cook ahead of time so I will have something to eat)
No concerts where they have T.V.’s in a smaller venue or a lot of lasers
Watch everything I put into my mouth food wise because of allergies
No medication for cold’s flu’s or allergies. Can take Advil but only if necessary
No lifting free weights at the gym
No riding a bike or motorcycle
Can’t spin in a car (good thing we have a Subaru)
Wear a helmet if going to a baseball game
No hockey games
No Christmas light displays or trees with flashing lights; color or white
No fireworks displays
No airplane rides
No ceiling fans can be on in a room I am in
Loss of driving privileges
How my seizures manifest:
Visual hallucinations (people around me who aren’t there)
Complex hallucinations (walls tilting, people melting into the ground, objects jumping up and down, floors going up and down)
Auditory hallucinations (hearing people talk to me)
Deja Vu (feeling I’m repeating something or been there before)
Jamis Vu (not knowing or recognizing my surroundings or the people around me)
TEA (transient epileptic amnesia–losing time–spent days with people and have no recollection)
Short term memory loss
Lose color hues
Everything looks animated, weird or dull
Fits of rage or anger/manic (not keppra but seizures that show on an EEG)
Adrenaline rushes (feel like anxiety/panic attacks but are not. They are seizures that show on an EEG)
Out of body experiences (I can see my hands and feet but cannot feel them)
Heart palpitations and abnormal EKG’s
I face public and employment discrimination because of the stigma that surrounds it. I can’t go to any doctor for an illness unless my Epileptologist has said whatever is going on isn’t epilepsy related. I am no longer insurable by any insurance company, outside of an employer, because of epilepsy and SUDEP.
I get blood work on a regular basis to make sure the medication is not damaging my body. AED’s, especially Keppra, can inhibit the absorption of vitamins such as Calcium, D and the entire B complex. It can also cause kidney and liver issues.
The scariest part of epilepsy is SUDEP (Sudden Unexpected Death in Epilepsy). 1 in 1000 epileptics die each year of SUDEP. If a person has refractory/intractable seizures than it increases to 1 in 150. Yes, I fall into the 1 in 150. While I do not dwell on it; it is something my husband I both know can happen.
This is not an exhaustive representation of what it’s like being epileptic, but a small sample. It’s something I live with everyday, all day. While it doesn’t have me, I do have it and respect what it means. I take my medicine twice a day. I take precautions to avoid as many of my triggers as I can. But, no matter what I do, it is unpredictable and there is no guarantee I won’t have another seizure while writing this blog or an hour from now. Nor is there a guarantee against SUDEP.
This is not a pity party for me or any other epileptic. It’s addressed to those who wish they had epilepsy. I hope this educates you on what it’s like to be epileptic. I also hope it serves as a reminder of just how blessed you are that you aren’t.