Megan’s Embrace story — Feeling safe again despite epilepsy
Megan was on the path to becoming a nurse. She started studying nursing, but she didn’t expect that she would be the one being treated in the emergency room until she was diagnosed with epilepsy and had to stop school. Here’s her story in her own words.
I had my first seizure at 16 years old. All I remember was a feeling of fear in my tummy… and then, all of a sudden I became very dizzy. Realizing this wasn’t normal I tried my hardest to get out of the bath and shout to my mum for help. I then remember waking up in my mum’s arms after having my first ever tonic-clonic seizure.
I was always in trouble at school for “daydreaming”. Teachers told me I would underachieve and that I would never learn anything, when really all along those ‘daydreaming’ times could have been partial seizures which at the time we were not aware of.
I had no more (known) seizures for approximately 4 years and there was no diagnosis at all by my neurologist. We felt happy and left without any questions. I achieved fantastic results at school with straight A’s and B’s, I went on to study adult nursing at Leeds Beckett University, UK.
I met some fantastic friends but mornings became hard for me, my body was aching and the migraines were unbearable. Unfortunately I could no longer continue, but I had to!
I met some amazing friends along my journey
At 20 years old I moved into my first home with my amazing partner Ashley, everything was running perfectly, until all of a sudden, I had a very big seizure resulting in me falling down the stairs and dislocating both of my legs.
This then became daily, then it started happening up to 15 times a day! I was scared, Ashley was scared, and it had taken over everybody’s life! We then had to leave our home to a ground floor flat to reduce the risk of me falling.
I had a 40-minute seizure that led to my diagnosis of PNES with multifocal epilepsy
July arrived. I couldn’t wait to celebrate Ashley’s birthday with him in our new home. But only 1 week before the big event I was admitted into hospital, I had gone into status and had a seizure which lasted 40 minutes. I missed Ashley’s birthday, he spent it by my side holding my hand the whole time I was there! My diagnosis is PNES with multifocal epilepsy.
I feared for my safety even more when my friend died of SUDEP
I found the Embrace and my friends helped in raising funds for it.
In October, I was made aware of the tragic news that one of my closest friends that I had met at university had died suddenly following a seizure! This hit me hard, and I feared for my own safety even more. We all did.
I then began to start looking for something to keep me safe.
After a lot of searching, I found Empatica and the Embrace watch, although the price of it was at the time unaffordable. BUT then my friends came up with an idea, they set up a Go Fund Me account and raised over £300 which allowed me to make my purchase!
The Embrace watch makes me feel safe again
I feel like we are nearly through the worst of the storm.
The Embrace watch has changed my life, I feel safe again! I can now lay in bed (with my anti-suffocation pillow) and know that if anything happens somebody will come!
I aim to be able to hop back on board again!
I’m now spending more time with my childhood best friend, Beth. We both share the same passion for horses, my aim for this next couple of years is to be able to hop back on board again. Although, now I’m waiting for my double knee surgery.
My Embrace watch is my ‘band of angels’.
It’s my first response device!
I would recommend the Embrace watch to anybody who suffers just like me. My only regret is that I didn’t find it sooner.
An epilepsy diagnosis could mean different things to different people. With this realization comes a need to be safe and feel safe, away from danger when a seizure happens, and to be able to receive help in those moments of unconsciousness.
The Embrace comes in handy in those moments, it sends phone calls and SMS to family and friends when seizures occur, and as a result, gives them more freedom to do things they could not previously do.
Our Embrace Stories series is our way of spreading epilepsy awareness, and also the idea that it is possible to feel more independent despite seizures.