Epilepsy Strikes Back: 25 Week Scare & 2 MAU Visits.

This post is written looking back over last week. It was too raw and my head too muddled to write this post at the time. I’m still emotional now nearly a week later and this is written with the help of what people say happened and my own scribbles written whilst coming around. It is a real account of what has happened and what Tonic Clonic seizures are like, let alone living Tonic Clonic seizures during pregnancy!

I woke up to the dog barking in my face and licking my cheek. I instantly knew what had happened. The nausea, overwhelming urge to cry and fuzzy head confirmed it. I tried to turn onto my back but realised I couldn’t see. Where are my glasses? I spot them by the door bent but seemingly ok. I feel my tongue, not bitten thank goodness, but wait where is my denture? Oh please don’t let that be broken. I roll onto my back. I scream in pain. I pull myself up. Great I’ve wet myself, must clean the carpet but first I have to make it to the bed. Crying with each movement I make it onto my bed. The dog closely following me. Must sleep. Every muscle aches. Oh god I’m going to be sick. Suddenly I remember I’m pregnant. I woke on my stomach. That means I fell and had seizure on stomach. I see my phone on the pillow and ring my husband. Wait don’t I have a midwife appointment today? I cry down the phone. I can’t get words to come out properly to my husband. He knows what’s happened. I somehow tell him I hurt my back, my tooth is gone and I landed on my tummy. He tells me to stay where I am, that I have to sleep and he will be home soon. I open my eyes and my husband is there, our dog still laying by my feet. He finds my denture under the radiator, dusty but intact and gives me my glasses. I move, again crying out in pain but begging for him to help me get to the toilet. I make it back to the bed to be given a bucket for sick and a heat pad for my back. Husband looks worried. Neither of us sure if I need to go into hospital, we wait until I come round from seizure a bit more. Everything aches and I just want to sleep but we need to think about baby not me. We ring the hospital and get told to come into the Maternity Assessment Unit (MAU) ASAP. We text my parents and my mother-in-law to let them know what’s happened and what we’re doing. Mother-in-law immediately rings my husband to say she will take us. I cry. Paracetamol and heat pad make moving possible but not pain free but I have to get dressed. We have to know if baby is ok.

I fall asleep in the car and next thing I remember is being in a bed in the MAU, I cry. Unable to answer questions my husband has to speak for me, wiping my tears as he talks. He is calm but I know from how is sitting he is just as emotional and uncertain as me. We heard Boba’s heartbeat after what seemed like an enternity. I’ve come around again enough  to ask about having a scan. Hearing the heartbeat isn’t reassurance enough, what if the placenta has been knocked or something else around baby isn’t ok? I’m told by midwife and doctor scans are not protocol. Before being discharged I get called into a private room on my own. I’m so tired and still not fully “back in the room”. I get asked if I’m lying about my seizure. That the way I and my husband say I landed doesnt match up to a seizure, or so the registrar has told the doctor. I’m in shock. I don’t know how to comprehend what has just been said, my seizure riddled brain can’t cope with thinking hard. I manage to say I’m not lying, that I often fall on my front and I definitely had a seizure. I get asked if I’m sure I wasn’t pushed. Again I say no. I’m discharged with advice that if I have any cramps or bleeding to come back.

An hour after getting home I had cramps. My husband and I agree we won’t go back unless there is blood. An hour later I am on the toilet and scream for my husband. I have no words just a tissue with bright red blood on it. I see him break down. I realise it’s my turn to be the strong one, that no matter how tired I am he needs me to be in charge right now. I tell him to cry it all out now, that when we get to hospital I need him to be in that moment. I phone my mother-in-law asking her to take us back to the hospital because I’ve got cramps and red blood. She is with us in 5minutes. My husband clutches my hand in the car. All of us silent. Once back at the MAU we waited nerves on edge. Clasping hands and praying things were ok. My post seizure headache is worsening but I can’t think about that right now. After hearing baby’s heartbeat and internal exam we were told all seems fine but the registrar (a different one who was appalled at me being accused of lying that afternoon, thank goodness for shift changes) wants me to be kept in overnight for observations. My husband hugged me so close as we cried tears of relief everything was ok with baby. He admitted he had thought it was all over when he saw the blood. My mother-in-law (like the hero she is) drove back to our house to pack me an overnight bag and walk the dog. We waited an hour for a bed to be found for me. After 45minutes we begged to be let back home because I needed to sleep off my seizure and the hospital lights were triggering absence seizures. We told it wasn’t possible as then I’d be denying care. One of the hardest things I’ve had to do is let my husband leave me in the hospital bed. I find it difficult to sleep without him let alone after a seizure or after a scare about our baby.

I got discharged the next day after non peaceful sleep, headaches and absence seizures that went unnoticed. I have an appointment to discuss medication changes in two weeks, in fact the day after our 28week growth scan. I didn’t leave the hospital feeling reassured. I didn’t 100% believe that Boba was ok. Heartbeat monitoring didn’t mean things around Boba were ok. Why hadn’t they just given me the reassurance of a scan? It bugged me, two weeks wait for our 28week growth scan felt too far away to get the reassurance I needed. So after I woke from an epic five hour nap my husband and I agreed we would pay for a private scan. That it was the only way we would both be able to breathe a proper sigh of relief. I need to see my baby, to know I haven’t hurt them, to know my Epilepsy hasn’t hurt them.

Blog/Tweet soon @HopeEpiMum x

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5 thoughts on “Epilepsy Strikes Back: 25 Week Scare & 2 MAU Visits.

  1. lauracharlie1988 says:

    I’m sorry all this happened. It sounds horrendous.
    The reason they don’t even really do a scan is because a heartbeat is very telling of a healthy baby. Any problems with anything, the stress would likely show in the heartbeat.
    It’s disgusting that they accused you of lying. Are you making s complaint

    • HopeEpiMum says:

      I understand but my notes do say baby’s heartbeat was irregular yet I wasn’t told that, I literally read it in my notes once I got discharged making me even more annoyed. The hospital not even 5miles from my one does combined scans & Doppler check as protocol. So weird how different things are. I’m not sure if I’ll be making a complaint, I doubt it. I mentioned it to enough staff that it should get back to someone relevant. xx

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