Epilepsy Sparks

Minimising My Risk of SUDEP Through EpSMon

Minimising My Risk of SUDEP Through EpSMon

Quite honestly, despite having epilepsy myself, it wasn’t until about 6 years ago that I became aware of SUDEP (Sudden Unexpected Death from EPilepsy). I knew that some people died from epileptic seizures and from accidents that occurred as a result of them (I’d had plenty myself and luckily I’m still here!). But that was about it.

After my brain surgery (for my epilepsy: temporal lobectomy) at the National Hospital for Neurology & Neurosurgery (UCLH), I became truly passionate about helping others affected by epilepsy; and purposefully learnt more about SUDEP. This year I found out about SUDEP Action and their award-winning, free app: EpSMon (Epilepsy Self Monitoring). EpSMon was created by an incredible team of partners based at University of PlymouthSUDEP ActionCornwall Foundation NHS Trust and Royal Cornwall Hospital).

It’s an easy-to-use mobile phone app which allows people with epilepsy to regularly monitor and indeed record key details about their seizures (including the type, frequency, length and any incurred injuries) and record any changes to medications, mood and lifestyle; which may all make an impact on one’s epilepsy and how at risk someone may be.

Indeed, like with so many other conditions, a person’s epilepsy “status” is affected by their overall health, so other areas monitored by the app are a patients’ physical health, their psychological health, and their social well-being. Lastly, the app gets the user to confirm upcoming medical appointments and indeed recommends one should it be considered necessary in assessment by the app.

As for so many people who are on Anti Epileptic Drugs (AEDs) and who have had brain surgery, my memory leaves a lot to be desired. Add to that my roles through public speaking, blogging, and more, I am easily distracted by work. EpSMon enables me to record relevant information easily, quickly, and even whilst I’m on the go. It also makes me acknowledge changes in my health that I may have otherwise subconsciously brushed aside and ignored.

By answering some simple yes/no questions (which have been created to help people track risk factors known to be linked to those passing as a result of their epilepsy), EpSMon enables me to record relevant information easily, quickly, and even whilst I’m on the go. The app is up-to-date with its questions and recommendations; which are modified by SUDEP according to the results of the ongoing research by the SUDEP and Seizure Safety project.

For those moments when I need to remind myself about everyday risks…or for instance; risks when I’m traveling, I EpSMon has a section “Learn about Risk”. We all do need reminding; especially as our levels of risk can change over time.

I know that I’m statistically at a lower risk of SUDEP than many; because my seizures are partially controlled (through surgery, medication and lifestyle). But, I also know that SUDEP is something that could still happen to me; as it did to Emily Sumaria (whose family are doing a Tuk Tuk to Turkey to raise money for SUDEP Action)

EpSMon has reduced my level of anxiety (incurred by the sense of helplessness I sometimes feel when it comes to my condition), reminds me to take care of myself (we all need a reminder…some of us more often than others…).

Now I don’t need to worry about: “Should I make an appointment with my GP or Epilepsy Nurse or will I be wasting their time?”; the app recommends what I should do for me. I also now don’t have to jot absolutely everything down in a notebook and then try and remember to take it to an appointment. EpSMon does this for me and empowers the professionals to provide me with very specific treatment; which not only improves my seizure control but my overall health and quality of life. This all then of course decreases my likelihood of SUDEP.

This blog isn’t to scare people but to empower those affected by epilepsy (and indeed any long-term condition), through self-monitoring. As they say, knowledge is power. Recognise your risks and minimise them so as to live your life to the full.

For more information (for patients, families, employers and clinicians), contact SUDEP Action

Download the EpSMon app for free on Apple or Google play: https://sudep.org/epilepsy-self-monitor

For all you do to better the lives and saves the lives of those with epilepsy, thank you to:

Torie Robinson

International Public Speaker & Consultant - Epilepsy, Mental Health, Diversity & Inclusion

Epilepsy Sparks CEO - featured on BBC, HuffPost, Sky News & More.

Does your company require an inspiring speech or some consultancy on epilepsy, mental health, and diversity & inclusion? Contact: torie@epilepsysparks.com