Amelia has been living with epilepsy since September 2021 during her first year at university.
She shares how she felt about being diagnosed with epilepsy and why she urges for more university staff to be first aid trained and able to help someone having a seizure.
During Fresher’s week of my first year as a Law and business student, I had a tonic-clonic or generalised seizure in my uni accommodation.
Fortunately, I had a friend with me, and he had first aid training so was able to ensure I was in the recovery position and called an ambulance.
I was kept in hospital for tests before being released later that day.
There was no previous history of seizures of any type and there is no epilepsy in my family so this came as quite a shock.
I do not recall what happened the morning of the seizure, despite the fact I had gotten ready to collect my sister from the station.
After a couple of minutes of seizing, I regained consciousness but remained unresponsive for a short period of time.
As I started to come to and communicate, I felt extremely confused in this initial phase and found the seizure aspect very hard to comprehend.
I was referred for an EEG (electroencephalogram) and an appointment with the Neurologist to discuss my case. At that time, I was prescribed Lamotrigine but having evaluated the risk vs. benefit, I decided not to take the medication.
I believed then that this was a ‘one-off’ seizure and I had purely been unlucky.
My biggest disappointment was having to revoke my driver’s licence which I had only had for six months prior. I was thrilled to have this independence and therefore devastated to lose this so soon.
The result of the EEG showed a tendency to seizure due to photosensitivity which was a puzzle to me as I had attended various festivals and clubs without any issue.
I was determined not to let this experience affect my lifestyle. I was 18, enjoying living independently, loved having a busy social life and joined the University Equestrian Club to return to my love of horses.
All was well for 14 months; I had been discharged from neurology and I was delighted to have my driving licence returned.
On a Saturday morning, I suffered another seizure, this time behind the wheel.
The car was written off, but thankfully no other person was involved. According to those first on the scene, I was unconscious, so it is assumed that this was another tonic-clonic.
I decided to start taking Lamotrigine and once recovered from my injuries, it was pretty much life as usual again.
Having had these seizures, I was still determined for this not to affect my life, so I still travelled, rode horses, partied and passed the second year of my joint Honours degree.
Everything was the same except for no driving. Whilst waiting for the referral back to neurology, which took seven months following the car accident, I experienced the third tonic-clonic whilst on holiday abroad.
A different friend was with me, but she had also done her research so again, she knew how to support me during and following the seizure. This was the third time I experienced a seizure in the morning.
A few weeks after returning from this holiday, I had a neuro appointment where a diagnosis changed from ‘tendency to seizure’ to epilepsy.
I had undertaken my own reading and research beforehand, so this just confirmed what I already knew.
However, my dosage of Lamotrigine has been increased and the potential triggers have changed focus to tiredness, heat, alcohol and/or stress.
Any of these, or a combination of these, can trigger another seizure. Epilepsy is classed as a disability, and you are therefore protected from discrimination under the Equality Act.
However, I wish to continue with my life as a young person as fully but as safely as possible.
University staff trained
Following my experiences, I would urge all university staff to be first aid trained and to understand more about how epilepsy can be triggered and how people may feel immediately following a seizure.
Apparently, I don’t make much sense for at least a couple of hours afterwards! If students play sports or are members of clubs or societies, it is important to let someone know about your epilepsy as an individual risk assessment may be necessary to keep you and others safe.
You should also tell someone in your accommodation so that they know what to do and how to support you.
I haven’t yet needed support from my university; however, they do offer resources on student disability and other areas of support should you wish to apply for DSA (disabled students’ allowance) or other grants.
I plan to consider starting and coordinating a student support group at my uni for any students with epilepsy.
For many students, particularly first year, this can be a daunting time and with the added stress of coping with epilepsy, many would benefit from talking through their experiences and any support they require.
The group could nominate a student representative to liaise with student support services to ensure the student’s voice is heard with regard to equality and equity.
An epilepsy nurse could be invited to the group to offer advice and support which would particularly benefit first-year students and/or those with a new diagnosis.
Epilepsy does not have to be a defining characteristic.