Nexus Supports… Juvenile Myoclonic Epilepsy

In line with our recent support for mental health awareness, disabilities and other such health-related challenges surrounding those in the industry we are Juvenile Myoclonic Epilepsy this week. We feel that the continued talk that ourselves and many other blogs are having about these issues are vital to tackling some of the stigma and confusion.

Additionally, we aim to provide a level of humanity to the subjects, to put real-life experiences to the information given as a reference from a variety of websites or by your GP surrounding these various topics. We are aiming to let you and a wider audience know that it is okay to feel the way that you do, and you aren’t alone in your battle for understanding and balance.

This week we have the additional account of Nicole Mendes who owns her own blog called The Other Side Reviews. Nicole has given her personal account of her experiences with Epilepsy in the form of Juvenile Myoclonic Epilepsy. It’s a fantastically detailed article and we are grateful that Nicole has taken time out to share her experiences and lend her backing to the feature.

So please feel free to read on and hopefully, you feel enlightened. As is usual we will provide some facts on the topic and highlight surrounding conditions and related medical insights.

Epilepsy

Epilepsy is one of the most common serious neurological conditions in the world. Around 600,000 people in the UK suffer from the condition, and around 87 people are diagnosed with it every day in the UK (How common is epilepsy, epilepsy.org.uk).

The condition itself affects the brain and often means that the sufferer will have a tendency to have epileptic seizures. Anyone can have a one-off seizure but this does not always mean that they have epilepsy. Epileptic seizures are “sudden bursts of electrical activity in the brain that temporarily affects how it works” (Symptoms, NHS UK). The seizures themselves affect people in different ways which are dependent on which part of the brain is involved. Seizures can cause the body to jerk and shake which can be described as a “fit”, whilst others can cause problems like loss of awareness or unusual sensations. This will typically pass in a few seconds or minutes.

The NHS UK website lists the different types of seizures that can be experienced as:

  • Complex partial (focal) seizures
  • Tonic-clonic seizures
  • Absences
  • Myoclonic seizures
  • Clonic seizures
  • Tonic seizures
  • Atonic seizures
  • Status epilepticus

Although each seizure listed has unique qualities to the individual seizure type, there can sometimes be an associated trigger. These triggers can sometimes be identified as (NHS UK):

  • Stress
  • A lack of sleep
  • Waking up
  • Drinking Alcohol
  • Some medications and illegal drugs
  • In women, monthly periods
  • Flashing lights (this is an uncommon trigger)

More information and advice regarding Epilepsy can be found on the websites referenced throughout the article and are also linked below for your convenience.

NHS UK

Epilepsy. org

Epilepsy Society


 

Nicole Mendes – My Personal Experience with Juvenile Myoclonic Epilepsy 

 

 

My Fandango with epilepsy has been a long one, but it has by no means been a simple one.  It’s true that I’m one of the more fortunate epileptics who can walk around the house without wearing a crash helmet and can make a cup of tea without needing to notify someone of my actions.  I am lucky in that way; however, having epilepsy presents with various challenges regardless of how severe or controlled your condition is.  Some children are fortunate enough to outgrow epilepsy, but as an adult who was diagnosed over twenty years ago, I’m quite confident this is something chronic.

So, what’s the big deal?  Take a couple of tablets and get on with life, right?

Yes, medication works for me, and I am grateful for it.  The problem is that as my body begins to acclimatise to certain drugs, they start losing effectiveness.  This means I either need to take more medication or switch to one of the new, trending pharmaceuticals that work a charm but also bring along several side effects.  A recent favourite is a drug called Frisium which is typically used to relieve anxiety and help with insomnia.  Trials were conducted where the drug was used as an adjunctive medication for epilepsy, and man does it work.  I’m just really tired all the time, along with constant mood changes.

I’ve always been a somewhat “disagreeable” child and was stubborn from day one, but as the years pass my moods change more quickly and dramatically without cause.  I live with the calmest people alive and, unfortunately, mood shifts are accompanied by later feelings of guilt for upsetting them.  Imagine feeling perfectly happy, then immediately experiencing a sensation of extreme anger and frustration sweeping through your body.  It’s like being chilled then wanting to scream at the person next to you for speaking and dying to punch something, then wanting to cry feeling self-pity, and then returning to a calm emotion laughing until your side aches at the silliest thing.  All this happens in a few hours.  The ironic part is that my facial expressions and vocal tone make it difficult for people to tell if I’m excited or upset about what’s happening.

People think epilepsy is a primarily physical condition, but the real difficulties lie beneath the service.  Working as a freelance writer online, I spend at least 50% – 60% of my day on my laptop, and the rest of my time either watching television or on my iPod.  My life is digital, and there is no problem with this, but because I am photosensitive spending too much time online or watching something “flashy” can trigger seizures.  This doesn’t seem to be a problem, all you need to do is regulate the hours, and things should be fine.  True, but it also means there is a loss of opportunities.

I miss podcasts.  I can’t watch YouTube videos.  I can’t stay online to meet with people outside of my time zone.  I can’t watch television with flashing lights.  Hell, I can’t attend music performances unless I’m sure there aren’t any lights of any sort.  These issues aren’t life-threatening, but it does contribute to a sense of isolation and missing out on something bigger.

I could twist your ear and spend hours speaking about what it is like to live with epilepsy.  I could tell you about hospital visits, the physical and mental side effects (for example, I still find it difficult to remember words after a week-long “episode” in December).  I can tell you about stress, how having epilepsy can make a person fearful of life, there are tons of things.  The good part is that you can live a healthy life as long as you don’t allow the monster to take over.

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