What Having Epilepsy Feels Like

Hello everyone! One of the things I feel that God wants me to do is to help raise awareness for those who also struggle with epilepsy, like I do. I believe that each trial he lets me go through has a purpose and that he wants me to use it to help others who also go through the same.

Epilepsy is very misunderstood and it can lead people to feeling isolated, alone, and damaged. Some people have no one to turn to because their loved ones have gotten fed up with their seizures. Yes, I have heard countless stories from a support group I am a part of where people have had family disown them because them having seizures was a burden on them. Some have had their spouses give up on them, their friends get sick of them, etc. It really hurt my heart hearing those stories because what people who have chronic illness need more than anything is support, understand, and most importantly LOVE. I want to raise awareness so that people learn the truth about epilepsy and stand up for their loved ones, coworkers, peers, church family members, etc. who have the disorder.

Epilepsy is so much more than just someone convulsing. In fact, I do not have the type of seizure that involves convulsing with my eyes rolling back. There is always a chance I could have one of those, but just because I haven’t doesn’t make my epilepsy, or anyone else’s epilepsy, less valid. All forms are seizures are serious and are hard to deal with. I personally have myoclonic epilepsy and temporal lobe epilepsy. Myoclonic seizures involve the body spasming and jerking at random. Sometimes I completely lose control of my hands at random and drop whatever I am holding. It is embarrassing because I have spilt a drink all over the floor at get togethers before. Or the other day at my birthday dinner I dropped my phone loudly onto the table and almost dropped it into my piece of cake. Sometimes the spasms are just a few and a minor annoyance. Sometimes they hurt really bad. Sometimes it feels like someone is shooting fire inside of my muscles are they spasm against my will. Sometimes they last on and off for an entire day, leaving me exhausted and sore. Temporal lobe epilepsy is a type of epilepsy that affects one side of the brain, vs generalized seizure types like the myoclonic ones, which affect the entire brain. I have both the focal aware and focal unaware seizures. Everyone’s symptoms are slightly different with them, but what remains the same across everyone who has them is that they affect one’s emotions, cognitive ability, sensory processing, and have some sort of physical affect too, often times.

With my focal aware seizures I am fully alert and aware of my surroundings, but I will often get a phantom smell that isn’t there, often time the smell of electrical fire or burning plastic that lasts about 15-20 seconds. Once I felt a huge wave of air go up my stomach and choke me (stomach rising sensation is a very common tale tell sign of a seizure). Unfortunately, I usually get more of the focal unaware seizures where I am unable to move my body while it is happening or my lack of awareness to things around me is gone. During these seizures I usually have Deja Vu (which is when something is oddly familiar or my brain brings me back to relieve a memory as if i teleported to the place and was literally reliving the memory again) or Jamais Vu(Which is when everything feels strange and sometimes I forget where I am or who I am with). Jamais Vu is scary and freaky. Sometimes I have a combination of seizure activity. I have had where I briefly black out and everything spins and starts to go dark and my body starts to fall. This has resulted in a few falls, including two down my basement stairs :/.

One of my scariest seizures was one I had yesterday and I saw myself having it because I was in front of my bathroom mirror when it happened and couldn’t move for a minute or two. I had been feeling off for about an hour where I felt really spacey, unable to focus, and extremely tired prior to it. Then I had some myoclonic seizures which gave me the urge head to the restroom. As I walked I thought I was actually going to pass out and hit the floor. I wasn’t sure what was happening yet. As I entered the bathroom I noticed my face was super pale and within a second or two I was weightless, stuck staring at myself in the mirror. My eyes went from the normal shiny light brown to a dark black and they looked cloudy/unclear. I could feel and hear my heartbeat slow to where it was barely beating and as I looked at my face it looked weird for a bit and I felt like I was looking at a stranger briefly. I felt as if I weren’t me. Once it ended came the flush of emotion, fear and then sadness. Finally the color came back to my face and I was able to move again. Then I felt no longer like I was going to pass out, but still a bit tired. I took it easy the rest of the evening because that took it out of me. I just had to lay my head down on the couch and curled into a ball for the next 20 minutes trying to recuperate. I believe I missed Mikki (my service dog) alerting me because I was already spacey. I am still a bit scared when I think about how I actually got to me see myself have a seizure. Now I know how freaked out my husband was when he saw me have on on Christmas day. He said I was extremely pale and looked very sick.

Everyone who has epilepsy has different forms of it and it slightly varies from each person. Some have absence seizures where they lose awareness briefly and stare. Some have seizures where their head falls back or forward. To make it more complicated everyone’s seizure triggers vary too. I still don’t really know what makes mine worse some days, but I do know lack of sleep/ change in sleep pattern is a biggie and that stress doesn’t help. I also learned too much water with Splenda flavoring will trigger several. As far as what else causes them for me…. I have no idea.

A common misunderstanding with epilepsy is that everyone is born with it and that it starts early in their childhood. This is the case for some, but for those of us like me...I wasn’t diagnosed until I was 25. I had my first seizure when I was 23. Could I have had some before and missed it? Yes because I was misdiagnosed with panic disorder prior. I thought I had something more than panic attacks going on, but that was the first go to because epilepsy can lead to anxiety disorders and depression.

A few other misunderstandings that those of us with epilepsy want people to know is that: medicine doesn’t automatically make them go away, and that it affects our everyday lives in more ways than you will ever know. I have been on medicine for a few months now and while it was decreased my focal seizures a ton, I still have two or three a month. My myoclonic seizures are still not controlled at all. I have at least one day a week where I have them on and off the entire day and night, and I have them periodically throughout the week more days than not. For some medicine has made them seizure free. I hope and pray I can get to that point! It’s a trial and error thing where you try different medicines and treatments hoping to find the best solution. Some do surgery if they have a tumor or a part of the brain that needs repaired. For many we just want people to understand that it is a chronic illness and that we are trying our best to fix it as much as we can. Epilepsy is more than a seizure. It affects mood, our energy level, our cognitive ability(before a focal unaware seizure I become unable to think clearly and feel like my brain shut off). Some days we are great days where we feel almost normal and have a lot of energy. Some days getting out of bed is a chore. Please understand that if we cancel plans or have to call off of work it is for a reason. We hate whenever epilepsy gets in the way of our plans.

So, what do those of us with epilepsy want from our non epileptic loved ones and friends? We want compassion, even if you don’t understand what is happening to us. Please don’t abandon us. We aren’t less because we have seizures nor are we not as intelligent. The worst thing you could do is cut someone out of your life because they had a seizure around you are or could have one around you. Yes they’re scary to witness, but they’re even scarier for the person having them. Apart from our epilepsy, we are normal human being. Rather than fear us having a seizure learn from us and research on what to do if we have one. Don’t rush to call 911 because unless we can’t break free from a seizure after 10 minutes or unless we actually injure ourselves, we will be fine and there is nothing the hospital can do for us except cost us $$$$$. We also want you to listen to us when we need to vent about them. Just please lend a listening ear. Pray for us to find a way to control our seizures/ become seizure free. If we don’t find a way to be seizure free than pray that God give us strength to continue our journey. Teach people that epilepsy doesn’t discriminate and that there is no one that looks like they have epilepsy. For the nonbeliever pray that they accept Jesus as the Lord and Savior and pray that God give them strength. Let us know we aren’t a burden and that you will love us regardless. Remind us when we are struggling that God is near us and cares for us. He will give us strength to make it through the hard days and it won’t always be this way. One day we will live in a perfect restored earth with no more illness or sorrow and reign with Jesus.

2 Corinthians 4:16-19 NIV: 16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

Also, please treat us like we are normal. Don’t coddle us and don’t feel that we can’t do normal activities. Many epileptics like myself work full time jobs and still lead a healthy social life. Sometimes we have to call of sick more often or cancel, but for the most part we live normal lives. Some of us cannot work and cannot go out as much because some people have seizures more frequently than others. Even those people want to be treated as normal, trust me. I have spoken with them as I have befriended members from our close knit epilepsy social media group. Help us work toward a cure so that we can be freed from this awful illness.

Epilepsy has caused my life to change quite a bit. My dream of finally getting my drivers license is not going to happen, at least until I can be seizure free for 6 months. I have to find a job that I love but also isn’t an overload. I can’t always just go out and enjoy my days. Sometimes I have to stay home and lay in bed all day, and that I hate. Sometimes I slur my speech and sound like a drunk person. Sometimes I drop stuff. But I am still me. I still love with all of my heart. This life is only temporary and in Heaven one day there will be no more disease or illness. While epilepsy is no fun, I could have something even worse. I have a personal relationship with the creator of the universe. God watches over me and provides for me. I have so blessed despite epilepsy and I will continue to share my love for Jesus with everyone because I desire people to have salvation and know the freedom that comes from knowing Christ. I still have dreams of becoming a college professor eventually, getting that PhD, and meeting cool people like Yael Grobglas. By the way, Yael played a character named Anezka on JTV that had epilepsy, which was cool to see some representation. I am always afraid I will have a seizure and push people away, but the longer I have epilepsy the more I realize the ones that matter will stick by your side. And it is my job to spread awareness so that epilepsy is seen as less taboo and more understood.

Romans 8:17-18 NIV: Now if we are children, then we are heirs--heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.