What epilepsy looks like

My husband is epileptic.

We have been together for six and a half years and he had his first suspected seizure two months into our relationship. He was 22 and a half years old.

My brother was working with him at the time and it happened at work (he’s a chef). My brother called the emergency services, let their boss know and then tried to contact me. It was very early on a Sunday morning and I just thought he was trying to ruin my morning. I finally answered and he told me that my boyfriend of two months was in an ambulance hurtling towards the hospital. I was living with him and his parents at the time and they were away on a cruise. I didn’t drive. I got to the hospital and was steered right to him, he had an awful lump on his head and was strapped down to a gurney and being given oxygen. Before I had the chance to speak to the paramedics, I had to convince his ex not to bring his two year old son to the hospital to see him because it was hard for me to see him like that, never mind a bloody toddler.

We put it down to a one off and it was three years later in 2015 that he had another seizure, again at work and again at first thing in the morning. They referred him to the neurology department and a doctor with the beside manner of a dead fish announced he had epilepsy and prescribed him medication. At this point, he had not had an MRI or any diagnostic tests and he was not convinced. Less than 3 months later, he had his third seizure on new years day 2016. We were now engaged and just over three months away from our wedding day. He was rushed to an MRI, where they discovered where the abnormality was and sent him to the epileptic clinic where his consultant (who was amazing) officially diagnosed him with epilepsy and prescribed him Levetiracetam.

Hubby has generalised tonic-clonic seizures which means that when he fits he loses consciousness. His recovery time is about 30 minutes and he needs to sleep for 8-12 hours afterwards. He is usually really confused, his third seizure was the first one I witnessed as it happened at home and when he came round he didn’t know my name. It is absolutely gut wrenching to experience, the adrenaline kicks in and so does the emotion and its really challenging to remember to time it. I used to be a carer and have witnessed countless seizures and handled them with a professional calm but when it is someone you love, it is such a different animal.

Hubby has to take his medication twice a day every day and has been doing so since he was officially diagnosed. Two and a half years later he had another seizure at home. It was on the morning we were due at the hospital to find out the gender of our baby. I’m not supposed to call the paramedics out anymore because we should be able to manage his condition but at 5 months pregnant, I panicked (who am I kidding, I would probably panic if it ever happened again). We knew our baby was healthy and safe and I was happy to push or even cancel the appointment but hubby (who didn’t remember I was pregnant when he first came round) was desperate not to let us down and so we went to the gender scan. I was so worried about moving him around so soon after his fit that the scan was a blur, we got the gender and got him home to bed where he was supervised while I went to the next baby appointment.

This is our story of hubby’s epilepsy, how it came on later in life and how sporadic it is (we are so grateful – I know some people have seizures daily or even multiple times per day). Living with it everyday? we do our best, we have cut out caffeine completely and hubby no longer drinks energy drinks. As his trigger time is in the morning, we make sure he gets enough sleep before work, meaning I have to take the night shifts with our baby and in the morning he must only do one thing at a time and not overload his brain. Hubby always texts me when he gets to work so I don’t worry. He can’t swim or have a bath unsupervised. Emotional stress is a suspected trigger so I make a point of encouraging him to share how he feels (not his strong point). Besides that, we function normally. After he got diagnosed, I got a kick up the arse and got my driving license which took that pressure off him (he lost his license in 2016 due to being diagnosed).

Being diagnosed just before we got married was stressful but out of love and concern for hubby. Hubby on the other hand thought I was going to back out! I realise that we have got off lightly but living with a diagnosis is never easy. We were really grateful for the NHS and the expertise of Dr. Adcock who runs the specialist epileptic clinic but were really disappointed with the Epilepsy Society – when hubby called them for advice, they told him to go on benefits for a year as he had been fired since being diagnosed due to the diagnosis!

Our top tips for making sure your person is as safe as possible;

  1. A band – hubby wears an alert band on his wrist. We got a silicone one off the ID bracelet company.
  2. Information for paramedics – updated info in hubby’s wallet which includes when he was diagnosed, how long his seizures last, his medication, emergency contact and when his last seizure was.
  3. Seizure first aid – you can get pamphlets or download it offline. Its crucial for people in the workplace in particular to know how to handle a seizure.
  4. Keep medical notes – these are so important to paramedics. I keep all of hubby’s medical notes in a file ready to go.
  5. Medication EVERYWHERE – you never know when you will be stuck without medication. We have medication in both cars, my backpack, on hubby’s keys, in the house and in our backpacks and hold luggage when travelling. This all needs to be rotated to make sure its in date.

© Images are not the property of The Sanity Fairy

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