The Reality of Epilepsy – Guest Post by Sarah

Sarah’s guest post is the 1st post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Sarah!

My name is Sarah, I’m 37, and from the US. I work in physician clinic administration at a hospital, where I have been employed for 18 years. I have a website called Mommin’ in the Real World where I blog about being a mother, my attempts at being an artist, and various other things that come to mind. I have Epilepsy. I was not born with it, nor did I have an accident, a fever, or anything that I know of that caused my condition.

My Story

Eleven years ago, when I was 26, one afternoon after work my boyfriend (now husband) and I went to a drive-in restaurant. We ordered our food and were waiting for it to arrive. We were having a conversation and I suddenly heard a loud SHHHHHHHHH sound and ringing in my ears.

I tried to tell my boyfriend that something was wrong with me when I realized that I couldn’t talk. Then my head turned to the right, facing the passenger side window, and my right arm moved up and back, as if I were reaching to scratch my back. I wasn’t controlling either my head or my arm. I was wearing my sunglasses and my boyfriend thought that I was angry or just not answering him- he couldn’t see my face. My body started to convulse and he called 911.

An ambulance came and took me to the Emergency Room at the local hospital. In the ambulance I could hear the paramedic speaking to me, but I couldn’t talk, move, or understand what was going on. Gradually, after reaching the hospital the fog cleared and I was told that I’d had a seizure. I was allowed to go home and was told to follow up with a neurologist, but I had to wait over a month before I could be seen.

A few weeks later my boyfriend and I were at home watching television and the same thing happened. I was sitting on the sofa and my head turned, my arm went back, and I began to convulse again. Then, a couple weeks after that I was napping on the sofa when I had a seizure in my sleep and injured my right shoulder’s rotator cuff.

It was frightening to know that there was something wrong with me and I did not have control of my body. I was told that I could not drive and had to be driven everywhere.

I had some imaging studies done and saw the neurologist who started me on an anti-epileptic medication. I had more seizures and it was difficult to figure out what medication and dosage would keep the seizures under control.

Eventually I had a vagus nerve stimulator (VNS) implanted; it is a pacemaker-like device that gives my vagus nerve electrical shocks at programmed intervals. I also have a strong magnet that can be used to activate the VNS and give me a stronger and longer shock to stop the electrical activity in my brain that is causing a seizure.

I haven’t had a full-on convulsive seizure in several years with my VNS and medication. I do however have seizure auras – a sort of warning before a seizure happens, similar to a migraine aura.

My aura will present in different ways. I feel confused. If I am working at the computer, I may not be able to type or read the words on the screen. If I am having a conversation, I will not understand what the other person is telling me, as if they are speaking another language, or my husband often tells me that I will respond to anything he asks with, “under there!” and get angry when he tells me that I am not making any sense.

I don’t tell a lot of people that I have Epilepsy and of course by looking at me you wouldn’t know it. I know that I have confused several people during conversations on the phone at work, where I either don’t understand what they are telling me or I don’t respond correctly to them.

I made it through several years without an incident at work, but almost a year ago I was in a clinic and visiting with the front office staff when I just kind of went blank, turned and looked at the wall, and didn’t respond to anyone. The nurse practitioner there kindly sat with me while someone called my husband (he also works at the hospital). He took me home, I had a nap, and all was fine- except for my pride.

About two months later the same thing happened while I was in another clinic. This time a nurse’s aide recognized what was happening and fetched a doctor. They took me to the Emergency Room where eventually I came to and realized what had happened. The ER doctor believes that a medication I had started a few days before had triggered the seizure but no one really knows. Now I feel embarrassed when I enter that clinic too.

For a long time, I felt depressed because I felt that I was dealt an unfair hand. I was angry because I couldn’t control what was happening to me. I didn’t want people to know or see that I was different. I felt angry because I couldn’t drive; you’ll never know how much you enjoy going to the grocery store or library alone until you can’t.

I was worried for a period that my seizures would keep me from having children, but luckily both the VNS and medication I take is safe for a baby in utero and when breastfeeding. Now that I have children, I worry that one day I will have a seizure in front of them or when driving with them in the car. I am cleared to drive and I do use my magnet each time I drive just to be safe.

I still hate that I have an implant under my skin. I have learned to be cognizant of getting enough sleep, religiously taking my medicine, or watch closely when I am ill, because all of those things can lower the seizure threshold and make it easier for me to potentially have one.

I don’t feel angry or depressed about my diagnosis any longer. I have learned to accept that I will never know why I have Epilepsy.

I have been incredibly blessed to have a husband who has always been by my side the entire time, even the time when my VNS settings were changed and made me snore horribly loud and keep him awake each night! (The vagus nerve also affects the voice box so the change in my settings caused stridor, a wheezy sounding high-pitched noise while I was sleeping.) He is patient, kind, has helped me so much. I don’t know how I could have made it this far without him.

The whole experience has made me feel kinder and less judgemental towards other people. You never know what another person is going through in their journey through life. Someone could be the perfect image of serenity on the outside but falling apart inside due to a struggling marriage.

Someone who is acting rude and impolite may have just received bad news. Someone could outwardly be the perfect picture of health but be very ill. Some people have illnesses or conditions that you can see, others have physical, mental, or emotional ones that you can’t see. I think it is important to see the person, not the diagnosis.

My Favourite

Superhero

My favorite superhero is Wonder Woman. I used to watch the TV show as a child and have loved her ever since.

I think she is a feminist icon and embodies so many positive qualities: inner strength, a belief in doing what is right and helping others, a strong will, compassion, a steady moral compass, and empathy.

Thank you Sarah for sharing your story with my readers and me!

If you would like to keep up to date with Sarah, you can follow her on Facebook, Pinterest and Twitter

28 Comments

  1. Hi my name is Brandi wheeler and my two year old Abby has been recently been diagnosed with epilepsy but we also found out that she has seizures in her sleep and I’m scared that I won’t know when one is coming on because her doctor told us that by the look of her eeg that she has been having them for awhile and we just didn’t know do any of you guys have any advice as to mentally prepare myself with something like this because it scares the crap out of me knowing I can’t do anything but give her the medicine the doctor prescribed her but the medicine makes her sleep and I’m scared that the medicine could also make her have a seizure

    Liked by 1 person

    1. Hi Brandi, I’m not a medical professional so I am unable to advise. Has the doctor not provided any further support with regards to learning ways to manage your daughters epilepsy?

      I have just sent Sarah (who this guest post was written by) and asked her to have a read of your comment and hopefully she can give you some tips.

      Like

    2. Hi Brandi, Sarah here. I’m sorry to hear about your daughter having been diagnosed with Epilepsy. I can imagine how scary that must be.
      You should check out the website for the Epilepsy Foundation: https://www.epilepsy.com/learn/about-epilepsy-basics/what-epilepsy
      I found it helpful when I was first diagnosed.
      Hopefully the medication will control her seizures, or you can find one that will. Other options worth exploring is a strict ketogenic diet (approved by physician), a VNS like I have, or a certified trained dog that can sense when she is going to have a seizure and alert you- but time will tell whether that would be necessary or not. It could be something that she eventually grows out of.
      I would make sure she gets plenty of sleep because sleep deprivation can lower the seizure threshold and make it easier for the brain to have one, as can illness.
      To be on the safe side, make sure she has a safe sleeping space, not something like a bunkbed or very tall bed.
      Learn as much as you can, find a support group for families with Epilepsy, and try not to worry too much about it. As a mother, I know that is easier said than done.
      Feel free to email me with questions or for support. http://Www.momminintherealworld.com
      Stay strong, mama!

      Liked by 1 person

  2. What a beautiful story that highlights the highs and lows of human life: change/unpredictability and perseverance. In life, what more are we truly able to do but to appreciate each day that is given to us? It must have been such a harrowing experience at the beginning to know but also not know. Indeed, to be kind to any and everyone is so important as we don’t know what one is going through at that very moment. x

    Like

  3. What a beautiful story that highlights the highs and lows of human life: change/unpredictability and perseverance. In life, what more are we truly able to do but to appreciate each day that is given to us? It must have been such a harrowing experience at the beginning to know but also not know. Indeed, to be kind to any and everyone is so important as we don’t know what one is going through at that very moment. x

    Liked by 1 person

  4. What an amazing story! Not knowing what’s caused something is the hardest thing to process. Your whole journey must have been incredibly frightening but I’m glad you’re accepting it. Invisible illnesses and disabilities are the toughest to live with because public understanding tends to be very limited. My son has autism and so many people think they are aware of the condition but have no understanding of it.

    Liked by 1 person

  5. I was diagnosed last year with mild epilepsy, and on the whole it doesn’t affect my life really at all. There are some things I can’t do like donate blood (in case it triggers a seizure). For me, I don’t remember going into any of my seizures, which sometimes makes me worry as I don’t know if there were similar signs before each of them. There’s also a lot of the ‘fear of the unknown’, especially when it comes to alcohol. My doctor said that you can still drink, but you have to realise that it could be one drink, two drinks or three drinks that could cause a seizure.

    Liked by 1 person

      1. This sounds like such a hard thing to live with, I imagine it would cause a lot of anxiety. Thanks for sharing your story so that those of us without such lives can better understand and be more empathetic. I truly believe that if we all understand just a little bit more we can remove the embarrassment that people feel when they have battles we dont.

        Liked by 2 people

  6. This is an amazing post! So informative, but so easy to read – I learned loads but also really felt like I got to know Sarah through her journey with epilepsy. It sounds really scary, but I really agree with that final takeaway – you can’t judge a person on one thing about them or how they’re acting at a particular time. Loved it ❤

    Liked by 2 people

  7. A very honest and informative story. Thank you for sharing, Sarah. Sorry to hear that you have had such a tough time with your Epilepsy, but glad that things are on a more even keel for you now. I wish you well for the future. x 🙂

    Liked by 2 people

  8. Thanks for sharing your story Sarah! I remember when I was put on medication that I’m not allowed to drive on (it’s so bizarre because I am allowed to keep my licence as long as I don’t drive…weird) and how small my world because because I can’t manage public transport so my world shrank to walking distance.

    I wish you all the best in the future!

    Liked by 2 people

  9. Thank you for sharing such a personal journey! Although I don’t have epilepsy, I do have an ongoing illness that changed everything for me and my family. I can relate to all your feelings. It changes you but I’m happy to say many of those changes turned into positive.

    Liked by 2 people

    1. Acceptance is a long and difficult process. Very similar to the 4 stages of grief, denial, anger, emotional and acceptance. I’m glad that changes turned into positives for you 🙂

      Liked by 1 person

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