Purple Day – Holly’s Story

History

I wasn’t born with Epilepsy. I never had any seizures as a child and there is no family history either. Whilst at University, I started to feel these strange sensations where nothing felt right. The room would go a bit hazy and I didn’t know why I was there or with those people.

I put it down to Uni nerves. I just moved to another City, started a new life and made a whole set of new friends, of course things felt weird. That was until the same feeling came over me whilst I was at home talking to my Dad. These ‘episodes’ used to stop me in my tracks, somebody suggested they could be panic attacks and advised I
see a GP.

Diagnosis

I did just that and was prescribed Beta-blockers, they didn’t help. These ‘episodes’ continued throughout University. After I graduated and started working full time, I noticed they were getting worse. People were telling me I had behaved strangely, ignoring people who were talking to me and looking vacant and lost, although I had no memory of this and no idea what they were talking about.

I went back to several doctors and they all seemed to agree they were panic attacks and would just get better. Even after I crashed my car (into a tram!) they didn’t seem too concerned. I was told there was a long wait on the NHS for CBT so I decided to fork out and pay for some private therapy. The second therapist I saw suggested these were not panic attacks but seizures, I thought she was mad but went back to my GP armed with a letter she had written explaining my symptoms. The GP agreed that I probably had temporal lobe epilepsy and that I should stop driving now. I was referred to a neurologist for further tests, including a brain scan, an ECG to check my heart and an EEG where they stuck electrodes onto my head. It was during my EEG that they managed to trigger a seizure through hyperventilation and record the whole thing. I still didn’t believe they’d got it right though, they’d mis-diagnosed me for 3 years, why would I believe them now?

Treatment

My Neurologist told me my brain looked fine (phew!) and now it was just a case of trying some medications. I was a woman of child-bearing age which automatically ruled out certain Epilepsy drugs but there were plenty more I could try. We just had to find the right combination to balance seizure control with side effects.

I have tried lots of different drugs, some made my seizures worse, most didn’t make a difference. All came with side effects. The most common side effect is tiredness, others included weight gain, weight loss, insomnia and rage! (my poor husband!) I have also tried a diet therapy, the Ketogenic diet, which is very high fat and almost zero carbs and is commonly used for children. I’ve come to the conclusion, that unfortunately, I’m one of the 30% of people whose seizures can’t be controlled with current treatments. I am hopeful that CBD treatments for Epilepsy will be extended as currently they are only available for a very limited group, which might be something else to try.  In the meantime, I need to do what I can to live with it and minimise the impact on my life.

How I manage at work and home

When I first got my diagnosis, I took 3 months off work to try and adjust to my new condition and get used to the side-effects of the medications. I quite quickly returned to full time work as I wanted to try and carry on regardless. My Epilepsy nurses were great when I was first diagnosed, informing me about my rights at work and offering to contact my employer if they needed support. I’ve worked in a number of places since my diagnosis and I’ve always been open about my Epilepsy, especially since my seizures are uncontrolled, I need my colleagues to know how to support me.

Some employers have been more supportive than others, and one of my reasons for working at the University is its Disability Confidence status and its commitment to support disabled employees. When I came to SHU, I brought with me a care plan from my previous job which explains the different types of seizures I can have and what you need to do to support me. I also have a local agreement where if I’ve had a seizure in the morning, I can message my manager and turn in a bit later after I’ve had a nap to recover. Only 34% of people who identify epilepsy as their main health condition are in work currently and this figure needs to improve. Measures like I have in place would help more people with Epilepsy to stay in work.

Outside work, I have had to make a few lifestyle changes. Surrendering my driving license was the first change, but I do get a bus pass in exchange so it’s not all bad. I’ve stopped drinking alcohol and caffeine and prioritise my sleep as these are big seizure triggers for me. There are a few things I can’t do unsupervised, like go swimming or have a bath or bathing my little boy. I’ve enabled location tracking on my phone so my husband can find me if need be. These are quite small things but they help me to minimise the impact of my Epilepsy on my life.

Read about Purple Day – international day for epilepsy awareness