Epilepsy and Me

Many of us have heard of epilepsy, but what is it and how does it affect us? And how many of us even know we have it?

Epilepsy is a condition that affects the brain, and causes frequent seizures. Seizures are bursts of electrical activity in the brain that temporarily affects how it works. Sometimes, seizures can be fatal, especially if you’re epilepsy isn’t ‘controlled’.

Summer 2017: My first experience of a ‘major’ seizure was in the shower, when I felt perfectly fine. Then within a flick of a switch I couldn’t breathe. The feeling of not being able to get any oxygen into my lungs hit me. I tried my hardest to open the bathroom door to get more air in but it was too late. I wake up slowly, at least 5 minutes later to a family member watching over me as I sat out the shower. I apparently was banging my head against the wall shockingly hard over and over again along with my eyes rolled up and my hands flapping. I was apparently very floppy and clearly unconscious, but something else was going on for me to be having those kind of actions, or so I thought.

I glance at myself in the mirror only to see the flash of a ghostly looking person, that was me. I was so pale and my lips had all the natural colour washed out of it. They were almost blue looking. I was in such shock about the whole event I just sat outside the bathroom just staring into space. I’ve never been unconscious in my life. I’ve never fainted, I don’t drink or anything. I ring my mum, she tells me to go to hospital straight away but I’m still trying to come to terms with what just happened myself. Stubborn me didn’t go and just thought I’d call the doctor tomorrow since it was about 5pm. I call the doctor the following day, to them questioning me about all sorts of things, then says she wants to see me the day after that phone call. So 2 days after the shower incident happened I attend my GP practice. I see a temp dr. He listens to what happened, obviously the accounts came from my family member but I just repeated them. He asks me if I drink or smoke. I answer no, so he asks me if I had a sugary breakfast. I answer not really, no more than usual. And he just put it down to that. A sugar rush. I wasn’t very convinced and wasn’t happy with what they said. I mentally answered in my head ‘I know it’s not that’ but I just thanked him and that’s it. I didn’t even have a clue myself what it was, Epilepsy, definitely wasn’t on my radar.

Winter 2017: Friday or Saturday night I was sleeping, then whilst I was asleep I had a seizure. I can’t really recall but I remember feeling something in my legs. My bedroom door was open so this was witnessed again and their words was ‘I was like a fish out of water’ my eyes were rolled back into my head with my neck very strongly strained back. I was shaking uncontrollably and erratically. They kept trying to wake me up but I wouldn’t wake easily, then when I did shortly after, my mum took me to hospital even though I didn’t want to. I thought there wasn’t a reason to, but she wasn’t having my objections. I reach A&E (emergency room) and they see me quite quickly, keep asking what happened, they take my obs like blood pressure and temperature and I have bloods done. Usually when I have bloods tests, because I’ve had a fair share in my life, it’s normally simple, and no issues happen at all. But this time my blood was pouring out whilst she was doing it and after. She tried to press down and get many towels but it was just flowing uncontrollably. I started realising oh wow there probably is something wrong. I see a Dr/nurse later on and they asked more questions. They say oh it’s probably nothing but they’re going to get the neurology department to make an appointment with me. I’m like okay that’s fine. Then she proceeds to give me some leaflets, one including something to do with epilepsy. I thought a little bit about it but not really, I just knew it couldn’t be anything serious like that.

Neurology calls me the following Monday morning, to see me that afternoon. I wasn’t expecting a call to be honest, especially so soon. I see a consultant neurologist, they ask me many questions and want to speak to my family member about what they witnessed. So I give her their number to call, after the appointment as she wished. She listens to all I have to say, I’m basically just repeating what I’ve been told since I can’t really recall anything especially the shower incident. She diagnoses me epileptic in that same appointment. And proceeds to say i’ll have to be on medication to control it for the rest of my life. I can’t miss one dose or else that could be fatal. The tone’s all very serious and there’s just nothing for me to say, I’m speechless. Also proceeds to tell me I shouldn’t do any dangerous sports or activities, like swimming in the ocean, jumping out of a plane. And even needing to have the bathroom door unlocked whenever I have bathe/shower. She asks if I’m planning on becoming pregnant? At the time I was 18, so I say ‘in the future yes’. And she repeatedly warns be how important it is to plan whenever I want to become pregnant with her as I’ll need many checkups at hospital and make sure the levels in my blood of the anti-epilepsy medication are maintained. If I wish to drive I’ll have to wait a year then after that if I have any other seizures I’ll have to be seizure free for 6/12 months before driving. It was just a lot to absorb.

I didn’t receive any therapy after being diagnosed. Even though I’ve heard you’re supposed to. I don’t feel like I’ve been supported as much I would’ve liked. They told me all the above and more and just basically left me to handle it as I wish. I was under the NHS so I’m not sure if that had a factor in the aftercare. I’m currently trying to get my provisional licence but it’s a long waiting game, after having to send off so many medical questionnaires and most the questions are almost impossible to answer precisely! Still waiting to be accepted but hopefully, it won’t hold me back.

Have you had any experiences with seizures, fits, or epilepsy? How do you or someone you know cope with it? Comment below!

73 thoughts on “Epilepsy and Me

  1. A fair bit of experience. Have done a fair amount of first aid and had a few friends who had epilepsy. Also seen a few alcoholics have grand mal seizures when they hadn’t been able to get alcohol in them for a few days after years of drinking daily.
    It has always filled me with an overwhelming sense of sadness when any person has been suffering like that. It is a significant reason why I think people should do first aid people should be more organized as groups when going out. People can know each other for years and never care how they are or be prepared. In Australia we have a 0.5 alcohol level when driving which actually creates a culture where people aren’t organized within their group. If people actually chatted about a few boring basics through the week then all their friends would be safer and more concerned about each other’s well being.
    Rant over

    Liked by 4 people

    1. That’s incredible that you’ve done first aid on people! You’re completely right about how more people should know about first aid, it could save a life.
      Thankyouu so much for your enlightening insight!😃

      Liked by 1 person

      1. I first got my certificates as a teenager in the cadets. It has been useful in several workplaces. I was a trainer for some time in the local footy league. Fairly usual type of injuries playing football. Nothing too different unless a player’s preparation is unprofessional.
        Anyone with a chronic condition knows about the discipline and sacrifice in every day life that most professional sports people would point blank refuse to make if they had to.
        People with a chronic health condition don’t get a pay rise and articles written about them when they decide not to do something stupid, or when their doctor wants to try a new treatment.

        Liked by 1 person

      2. That’s great! Everyone needs to know about first aid.
        Thankyouu for sharing such an interesting insight! Your knowledge is wonderful. Have a lovely day😊

        Liked by 1 person

      3. I’ve probably had more first aid done on me than I have administered on others. The grand mal seizures are particularly sad when someone has taken one near me because they are so confused and exhausted when they come to. I have worked with alcoholics for a long time and the whole ordeal of alcoholism is so sad for the person, but also for their families and all society. It cost everyone so much and is difficult for society to talk about let alone for alcoholics to get dialogue and help. Those with a strong physical allergy to ethanol alcohol that is. Then drugs and their dealers like to get involved financially with recovery models and unfortunately real alcoholics who never or rarely break laws just get sicker and sicker, and a mother or father is left like a pariah for having a kid who was a real alcoholic and never grew up. Other men taking grand mal seizures near me has effected me greatly in the 20 years I have been sober.
        Good luck this week.

        Liked by 1 person

      4. Wow so knowledgable. This is so interesting and eye opening as to how much is out there. Thankyouu for reading and commenting! So enlightening 😃

        Liked by 1 person

  2. Prayed for you after I read your post. When I was a teenager, I worked in a grocery store. A co-worker had epilepsy. He had a few seizures while at work. I didn’t know what to do except treat him as normal after the seizure passed.

    Liked by 3 people

  3. Yes, this is a good post, for multiple reasons; one to share is therapeutic, it also helps others with similar health issues and it brings the subject to mind…for people to be more knowledgeable/helpful.
    I hope you are & will be well 🙏💕

    Liked by 3 people

  4. Great post. One of my favorite acquaintances in the world has shared with me about her epilepsy, and this helped me to understand even better what she has gone through for this illness. I’ll continue to pray for those affected, as I wish improved brain health for all of us. Thanks for sharing your story, and please keep on being well! This post helps me to understand. Thank you.

    Liked by 2 people

  5. Sad to hear you’ve suffered with epilepsy, Antonia ❤️
    My husband has an ultra-rare bone/muscle disease (HPP)
    and I have a genetically degenerative retina disease (RP).
    For what it’s worth, there’s comfort in realizing that we all have something.
    Truly, everyone either has something or knows someone who has something.
    It may be less noticeable or yet to develop, but given time it finds us all 🙏
    My joy is knowing God helps me through each day. Further joy is knowing
    our somethings can help inspire someone else! 🤗🙏💜 Jackie@KWH

    Liked by 1 person

    1. Wow you both have a lot to deal with, you have such a positive outlook on life, and that’s incredible. You’re right, we all do have something. I hope yourself and your husband are doing well.
      Thankyouu for such an insightful comment. Have a lovely day!😃

      Liked by 1 person

      1. We’re well, thanks ❤ Hope all's well with you, as well! We all do what we can with what we've got. But without Jesus, it'd just be a stressful/painful life of survival 🤗✝🙏💜 Jackie@KWH

        Liked by 1 person

    1. Really? Doctors sometimes are not the greatest at all and can belittle the symptoms you’re truly suffering from and put it down to something else like ‘medication’. Follow what you truly believe you’re suffering from, and push for tests and referrals. Doctors sometimes don’t act upon symptoms until it’s too late.
      Thankyouu for your comment and hope I’ve helped in any way. Have a lovely day😊

      Liked by 1 person

    1. Thankyouu so much and you’re right. Some people don’t realise they have epilepsy, I definitely didn’t. So it’s good to get more experiences and information out there. Thankyouu for reading and commenting! Have a lovely day😊

      Liked by 1 person

  6. When I was in high school my classmate had epilepsy. It was incredibly scary to watch. My pup suffered a seizure a few months ago and he has to take medicine every 12 hours for the rest of his life. Seeing that happen to him was one of the most frightening moments of my life and there was nothing I could do. I never want to do though that again.

    So, I can’t even imagine how you feel. Seeing it from the outside looking in was scary as all get out, so I can’t imagine going through it personally. I pray you are okay now. God bless you

    Liked by 2 people

    1. It must be terrifying watching a seizure happen. Human or animal it’s horrifying to watch as you know there’s nothing you can do other than make it as safe as possible for them. You’ve experienced so much and hopefully you won’t have to witness any more episodes. Thankyouu for such an interesting insight!
      Have a lovely day😊🙏

      Like

      1. It was horrifying with my pup and my classmate 😢. I’m sorry that happened to you. Must’ve been really scary. Thank God you didn’t really harm yourself when you fell in the shower. My cousin suffers from seizures now too and doctors can’t quite pinpoint why. I pray you never have any more episodes. Have a wonderful blessed day my beautiful friend. Thanks for sharing ☀️🦋🌻❤

        Liked by 1 person

      2. I hope they find the cause for your cousins seizures, they’re are so many neurological disorders, it’s so important to find the right one and treat it anyway they can.
        Have a lovely day, and Thankyouu!😊

        Like

  7. Harrowing, Antonia, which your vivid descriptions make all the more intense.

    My friend suffers from occasional seizures, but his are triggered by visual stimuli, such as an image on a television screen. Yours are much more arbitrary, coming in the shower, and even when you’re asleep (!).

    Thank goodness the neurologists finally recognized the condition, instead of ignoring it, as previous docs did, unforgivably. May their help, including any meds, help you reclaim your life.

    Liked by 2 people

    1. That must be very hard also, if his are triggered my visual effects, meaning you can’t watch or attend certain events. Thankfully they recognised it, it really does save a life!
      Thankyouu for your insight, have a lovely day😊

      Liked by 1 person

  8. Several years ago at a school where I was teaching, I witnessed a small seizure of a student in the cafeteria during lunch. We tried to make sure the student was as safe as possible from being harmed during the seizure.

    Liked by 1 person

    1. I hope they’re well now! That must’ve been quite frightening to witness. Thankfully it was as safe as possible for the student.
      Thankyouu for reading and your insight, have a lovely day😊

      Like

  9. This is a wonderful post it truly resonates with me. Wow…your story is so familiar, like so many of us who
    were diagnosed at some point. After a clear diagnoses it is helpful to keep a Headache, Symptom and Trigger Log. This helps to track any patterns, learn body. Staying hydrated, active, yet balanced, as getting good nights sleep is essential. The Static, is the electricity flowing through the brain. I actually wrote several pieces about different accounts. “Static” is first one that comes to mind. You are in my thoughts and prayers Antonia💜🙏🤗

    Liked by 2 people

    1. And Thankyouu for such a knowledgable insight!! You’re so accurate on many of the points you raised. Thankyouu for such a wonderful insight, have a lovely day😊

      Liked by 1 person

    1. I haven’t suffered any major ones since treatment which is good. My medications been raised every now and then as it wasn’t on a high enough dose. Thankyouu for asking! Have a lovely day😊

      Like

    1. Yes Thankyouu I’m well!
      It is quite scary, I imagine it must be terrifying actually witnessing a seizure also!
      Thankyouu so much for reading and commenting!
      Have a lovely day😊

      Liked by 1 person

    1. Thankyou so much! It is hard and so many people have have a varied amount of how it affects them.
      Thankyouu so much for reading and commenting also!
      Have a lovely day😊

      Liked by 1 person

  10. Hi Beautiful! My son has epilepsy. He never had a grand mal tonic/clonic seizure until 18. He used to space out a lot and the doctors just told me he was healthy, don’t worry about it. And then out of nowhere, after graduating high school, on Christmas Eve, he seized several times a day. That was the start of a very dark and long period. Epilepsy is scary and sporadic. He’s 27 now.

    Unfortunately, they never could render a proper cocktail of epilepsy drugs to control his seizures after living basically in the hospital on and off for a couple of years. They then decided to remove part of his brain. Just as they were getting ready to remove part of his brain, the brain surgeon had collapsed over the patient scheduled before him while performing brain surgery and died of a heart attack.

    I’m telling you, a couple of books should be written of the journey. My poor son. It was traumatizing to live and watch, especially when he’s a grown man and is 6’5″.

    It was the worst couple of years of our lives living in and out of hospitals. I’m sad the surgeon died, but I am happy God intervened as my son did not have the surgery, and he has not had any seizures for two years and is off all seizure medication.

    Epilepsy sucks and once you’re tagged, it makes it hard to obtain your license. But if you’re tenacious and can prove being seizure-free, all will be well.

    My suggestion to you is never to give up. God loves you and He sees you. But He has blessed us with great epilepsy-related neurologists for good reason. If you’re not being followed and treated by an epilepsy-neurologist, epileneurologist, be your own advocate and get one. My adopted daughter seizes when she’s not pregnant. Her epilepsy is hormone-based. There are so many generalizations, etc. Get to know your body and listen carefully. God gave us symptoms and pains to alert us to our own unique wiring issues and the brain is intrinsic and not enough is known to treat it.

    So sorry… I went on a Tammy Tangent with wet fingernails. May God keep you safe and healthy and seizure-free. Hugs and a covering of prayers over your beautiful and precious life to be seizure-free and freedom from fear that the unknown presents.

    Hugs, Tammy

    Liked by 1 person

    1. Hi Tammy! Aww thankyouu!
      Ohh really? Wow he’s been through so much. Epilepsy is very scary, for the person suffering from the condition but also anyone around them, especially if they’ve witnessed you having a seizure. That’s so sad that they couldn’t control it properly with medication. Remove part of his brain? Wow that must’ve been an emotional rollercoaster, and not knowing what the outcome would be. The surgeon died? Wow what are the chances of such terrible news, at such a difficult time in your lives.
      Definitely a whole series of books should be written about the journey, been through so many hardships.
      I’m so happy that he didn’t have the surgery either. Even though sadly the surgeon died and that must’ve been frightening and upsetting, they say everything happens for a reason. And removal of part of the brain I can imagine is such a big operation.
      Oh wow that’s amazing that he’s been seizure free for two years and off all seizure medication!
      You’re so right in everything you’ve said! Exactly there are many signs and symptoms to tell you somethings wrong and your body tells you that for a reason! I try my very best not to take pain relief for anything unless I’ve had an operation or something. As the doctors try pushing it down your throat for anything! Your body sends your brain signals to say you’re in pain or somethings wrong and I’m all for listening to the body and not suppressing it, unless you must.
      Haha don’t apologise! What you’ve said is so interesting, enlightening and inspiring!
      Thankyouu for sharing this story, and for reading this post!
      Hope all is well!
      Have a lovely day😃😊

      Like

  11. I know very little about epilepsy, but I do know this about doctors, in the NHS or elsewhere: Some are wonderful and some aren’t. If you get one who doesn’t give you the help you need, you need top push. Ask for a second opinion. Ask to be referred to a specialist. If you’re told no, you can say, politely, “I’m sorry, but that isn’t good enough. This is a serious condition and I’m not getting the help I need.” If necessary, ask where you can go to appeal that decision. This is your health and you have a right to be taken seriously. Unfortunately, sometimes that means being politely pushy.

    Liked by 1 person

    1. You’re so right! If you don’t push for anything in life, you won’t get. It’s terrible how somewhere you go for help/treatment, you have to fight for. The reason you’re going to see these doctors/consultants is because you’re unwell and may be unable to fight for good healthcare. I completely agree with everything you’ve said! There are amazing doctors/consultants out there, it’s just about finding them!
      Thankyouu so much for reading and commenting and such wonderful advice!
      Have a lovely day😊

      Liked by 1 person

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