Hayley Allen - Purple Day 2021

I had my first seizure at the age of 9 months and was diagnosed at 18 months of age.

It affected my life in every aspect from very early on. I was so poorly that I couldn't go to nursery or play groups and my parents were told on many occasions that if I live to see my 5th birthday I would be doing well. So I have outlived every expected age the doctors gave my parents.

I don't have one particular type of epilepsy or seizures I started off by having partial focal seizures that could last up to 24 hours at a time. This continued til I was 16 when I had my first tonic clonic seizure. This was particularly frightening not just for myself but for those around me as it was not only my first grand mal but this took place at my grandparents golden wedding anniversary party.

I have suffered many seizures and drug changes and detoxes since. Most of that was in the past year, my last big seizure was March 2020 this was a rather serious seizure as I was seizing for 2 days and my normal emergency medication I get given if I get taken into A&E wouldn't work so they gave me many types of medication and did many types of test and I was kept in for observation once I was stabilised. Stabilising me took quite some time as I went into non convulsive status. Most of my triggers have been the same since I was a little girl. They have always been lack of sleep, stress and extreme temperatures. It was always important to try keep a happy medium with my body temperature and the temperature of bath or shower or swimming pool temperatures as I was growing up. Growing up my seizures were mostly triggered by stress, lack of sleep and low immune system. If I suffered from anything even as minimal as a cold I could easily end up in A&E. I have taken all kinds of medication over the past 28 years including my current medication which consists of:

  • Epilim chrono
  • Zebinex
  • Lacosomid.

I also take tryhexiphenadil and citalopram as I have deterioration of my joints and depression as a side affect of my long term medication and medical treatment over the years.

My experience with the NHS over the years regarding treatment and diagnosis has been very mixed. The child neurological team were brilliant with me and my parents. However when I got transferred to adult neurological services it was a very different experience. In the past 10 years I have been questioned to if I am really epileptic or not and if I even know what my own seizures are like - or if it is all just in my head. This became quite upsetting as I started to dread each annual neurology check up and every appointment made me more anxious than the last it got to a point whereby I was sent to a specialist hospital for epilepsy. It took 2 weeks of tests and 3 months of seizures and treatment to convince my local neurological team that I was actually epileptic and it wasn't just in my head. In more recent years I have had many problems with the adult neurological team again!!! As 11 months ago I started a detox in a very unsafe manor due to my healthcare professional team taking away my emergency medication that I had been on for 14 years in the space of 2 weeks this was also done in my own home not in a safe environment where I could be monitored this was especially scary and unsafe as I was living alone. This detox made me quite ill and I struggled every day for 6 months solid, not only did this affect me mentally but it affected me emotionally and physically as well because if this incident I am now in the process of looking for a new hospital with a new neurological team.

The main discrimination I received is with my education and trying to get jobs and opportunities to give myself a decent life. I have trained in many different courses but my true passion has always been to help those with epilepsy by using the experiences I had and making the best of them. There wasn't anything like that for me to benefit from when I was a child. My ultimate hope and goal would be to help people with my story and experience and that would be a life dream and ambition for me to do something that I love and am so passionate about. I have experienced a lot of negative feelings and negative attitudes from many people through all walks of life and it made me very uncomfortable and very angry with the world. I created a barrier to protect myself and the older I got the harder it became to keep that barrier up without unintentionally pushing people I truly loved away and that made me hurt most.

So I eventually got to a point where I tried to change that and decided to try letting people in and in doing that I found myself in a place where I could say I have epilepsy but it does not have me and my epilepsy is such a small part of who I am as a person and what I have to offer to people. I have a lot of negative experiences but I turned a lot of that around to become stronger from it.

Hayley Allen - Purple Day 2021
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