"My epilepsy journey began at age fifteen. I suffered a traumatic brain injury which would later be diagnosed as the reason for my PT epilepsy at age seventeen. I didn't realize I even had seizures until my Grandma caught me seizing at 2am one morning and I was smothering my infant daughter. ALL I could remember once I came to was I had been breastfeeding.
Fast forward and since then I have participated in numerous studies with different neurologist. I am now 39 and have been on 17 different medications and at times cocktails of nine different ones a day at multiple doses. Some medications we learned along the way I had allergies to. Some caused unpleasant side effects, from being so fatigued to just not being able to stay awake to work to involuntary muscle movement...or the opposite... developing insomnia, being wide awake. Which lead to having more seizures as sleep deprivation is a trigger for me. The joys! I used to do a yearly In patient study at the University hospital with my long time Neurology team. The goal was to find the focal point of my seizures and perform surgery to prevent more or eliminate them all together. Over the years I was told my EEG reflected that of a person who should not be functional...yes...exactly...what does that mean?
We now know my memory has gotten worse over the years. I also am not a candidate for brain surgery as no focal point has ever been confirmed. Seizures for me start on both sides. I have nocturnal seizures, staring spells, partial, grand mal now known as tonic clonic. I cannot drive since 2007. I had a head on collision and almost killed myself and others after suffering a pretty bad tonic clonic. My license was suspended, then revoked as I could not go seizure free for three months much less six.
Set in depression…
After losing that independence. I had to start catching the bus and asking for rides to grocery store, doctor appointments; etc. Now...I started working at fourteen, had my first apartment with a cosigner at sixteen. I was not used to depending on others especially for things as simple as running an errand or going to get food. I tried applying for assistance for VIA trans to pick me up and take me to doctor appointments. I was flat out denied. Reason - I was honest. I answered that yes I can walk 2 blocks without rest. I can on a normal day...however never thought that would ruin my chances at services.
I hold a full time job and have for years. At one point in my life I worked two jobs during the week and one on the weekends. Losing my ability to drive, while I fully understand why... made me feel so damn frustrated. I don't want to depend on anyone. I couldn't go pick up my own kids at school if they called and had a fever. Thank God for uber and lyft nowadays.
I was diagnosed with MS at twenty six. Then two years ago...was told I have stage four kidney disease. No family history of it. I was not a drinker then, never did hard street drugs. But...oh did I take a series of medications throughout the years to find the perfect cocktail to better my seizure activity. Now...seizure meds typically affect your liver. However my nephrologist and neurologist have not ruled out the seizure meds over the years. Fix one thing damage another. Yes...that is what I felt.
I underwent the VNS surgery almost 3 years ago. Didn't show drastic difference. Still have seizures often. It almost seems my partials are worse but my tonic clonic is better. About 1 every three months. The VNS fell out of it's pocket last year and I had to have it replaced.
Shortly after my last VNS surgery. I was falling more in more in a depression. I should be grateful daily for being alive. So many others have it worse. I know...but try telling my mind that. Make it say and believe that and be more humble. Yes...it's a struggle. Daily. Some days I wake up and I am upset at waking up. No real explanation of why. Do I need one? I just want to go back to sleep. I prayed before I went to bed the night before...why am I waking up like this? I realized it was more common to wake up in a "mood" than be my positive self.
My neurologist says some anticonvulsant meds can cause depression or increase the chances. But without meds the tonic clonic get worse. I cant stay as focused on work as I once was. I lose track of what I was doing. Your name? Yes.. i was good with numbers and names.. now.. I'm lucky if I remember a new person’s name five minutes later as Kate when it was Kennedy. Hey! At least I guessed it was with a K.
I am no longer who I once was. I don't know who I am or who I am supposed to be most days. I went through a phase of bathing daily as we are not supposed to bathe unsupervised to avoid drowning. Well like I said daily. I convinced myself I was not going to let epilepsy or any illness beat me. I was going to enjoy life. I love baths always have. So daily...then I realized I was being careless and had reached a point in my mind that if I drowned, it was meant to be. I had other seizures while bathing but someone always caught me. May have had broken toes or bruised body from convulsing in the tub but someone always saved me and I never remembered any of it after. So... now I'm bathing daily unsupervised because I'm a badass.. nope. I was self destructive. I didn't care. I openly said one day to a family member - “If I ever have a seizure while bathing and drown, you should know it will be peaceful for me" I said that...I mean. I had some before and never remembered having one. So...wrong.
I was in a bubble and couldn't pop it. A bubble of negative thoughts and a feeling of worthlessness and just lost. Nothing made me genuinely happy. Not long term anyway... Trips. Family. Work. Friends. Being successful. Being Alive. God. Nothing.
I recently sought help. I meet with a therapist and psychiatrist to work through my thoughts. Get back to who I once was. The fearless woman who can and would overcome hardships and health setbacks. I was not happy with the person looking back at me in that bathroom mirror. My mind controlled me and my mind was so far gone in the negative...a war in my head. How do you live your passion, have a good support system, good kids, overcome so much and yet feel EMPTY. I had began to drink. And drink... and drink... I lost all motivation, hope, and belief in myself. I was careless, and did things out of character for the old me.. life was dull gray.
It took a lot to make the call and seek help. I had a daughter still at home to protect and guide. I LOVED ME. I KNOW that person was in there somewhere. So...forget the embarrassment. I need to feel good again. I need to feel grateful when I wake up and really live my best life. Saying it daily.. i speak it into existence but my mind wasn't listening. So... I ain't too proud to beg. I AM NOW seeing someone and working towards a reinvented old me. I am not ashamed to have to get on meds for anxiety or clinical depression. I will continue to say positive things daily to myself and others daily as part of my new journey. My journey to dealing with mental health issues that come along with having epilepsy. It is part of who I am now...but I won't let this be my end all.
So today I smile, I say positive things to myself and I am not being careless. But...will I wake up tomorrow and be oh so happy? Probably not. But...I will try again. Starting with a positive thought in the morning, meditation if needed and a smile. Stay tuned. I share this with you because I want others to know that no one is above challenges. We are all human and mental health is real. Depression doesn't discriminate and I am not superwoman. I know what you go through. Crying for no reason, or so it appears. Not being happy. Mood swings, a sense of just defeat. Embrace what you are feeling, and seek help. Tell someone.
When I got stuck in my unhealthy mental patterns, I pick up my pen and write.
Our feelings come from our thoughts and the thoughts that wreak havoc are distorted., if you try writing them down it may help reveal their true nature.
Good luck to us all. We got this too!'