Epilepsy: Living Life to the Fullest!

At the Independence Project, we’re all about celebrating life and supporting each other! We have many fantastic members who live with epilepsy. While we know it’s a condition that needs our attention and care, we also know it doesn’t stop anyone from joining in the fun and living life to the absolute max!

Did you know that in the UK, over 600,000 people are living with epilepsy? It’s also more common among people with learning disabilities. In fact, about 1 in 3 people (32%) with a mild to moderate learning disability also experience epilepsy

So, what exactly is epilepsy?

Epilepsy is a neurological condition where there is a tendency to have seizures. Now, lots of people might have a seizure at some point in their life, but that doesn’t mean they have epilepsy. It’s like having a hiccup – it happens, but it doesn’t mean you’re going to hiccup forever! 

There are many reasons why some people have a greater risk of developing epilepsy than others. These can be due to an inherited genetic condition, a non-inherited genetic tendency, brain injury and structural differences in the brain. These structural differences or changes in the brain can be caused by the brain not developing in the usual way or from illnesses such as meningitis, stroke or tumours.

How does epilepsy affect someone day-to-day?

Even when epilepsy is well-managed, it might mean a few extra trips to the doctor or remembering to take medication. But it’s all about finding what works and making it part of the daily routine! However, epilepsy can affect people’s lives in a real and meaningful way.

It can effect :

• • Mental health: Increased anxiety, depression, OCD and PTSD.  But we’re here to support each other and find ways to boost those spirits!

• • Memory: Memory loss is  common, short-term memory might be a bit tricky sometimes.

• • Isolation: Sometimes, medication side effects or how others react to seizures can make socializing a bit challenging. But at Independence Project we’re all about creating a welcoming and understanding community!

• • Employment: Finding and keeping a job might have its ups and downs due to inflexibility or misunderstandings and stigma. But we’re here to champion everyone’s talents and abilities!

• • Injury : Some seizures might lead to a higher risk of injury. But we’re always looking out for each other and making sure everyone stays safe by adapting our activities and providing extra support.

What’s happening during a seizure?

During a seizure the brain experiences a sudden and temporary disruption of its normal electrical activity between brain cells. The signals can become scrambled and there are sometimes sudden bursts of electrical activity.

This can cause:

• •  A loss of awareness and consciousness

• • Muscle changes such as stiffening or jerking of body parts

• • Sensory disturbances such as strange smell, tastes or sensations

• • Behavioral Changes such as confusion, staring spells or other behavioural changes

• • Breathing problems or difficulties during the seizure including temporary cessation of normal breathing

Are there different types of seizures?

The NHS identifies different types of seizures, like focal (partial) and generalized (which include tonic-clonic, absence, myoclonic, tonic, and atonic).

• • Focal (Partial) Seizures: These seizures originate in a specific area of the brain.
    • • Simple partial seizures: May cause unusual sensations, movements, or changes in vision, hearing, or smell, without loss of consciousness. 
    • • Complex partial seizures: Can cause loss of consciousness or awareness, and may be accompanied by repetitive, involuntary movements or behaviors. 

• • Generalized Seizures:These seizures involve the entire brain.
    • • Tonic-clonic seizures: Characterized by a loss of consciousness, stiffening of muscles (tonic phase), followed by rhythmic jerking (clonic phase). 
    • • Absence seizures: These seizures cause a brief loss of awareness, which may appear as staring or daydreaming. 
    • • Myoclonic seizures: Sudden, brief jerks or twitching of muscles. 
    • • Tonic seizures: Cause stiffening of muscles, often leading to falls. 
    • • Atonic seizures: Cause sudden loss of muscle tone, leading to falling or dropping. 

• • Other Seizure Types:
    • • Febrile seizures: Occur in children with a fever. 
    • • Dissociative (non-epileptic) seizures: Seizures that may look like epileptic seizures but are not caused by abnormal electrical activity in the brain.
      • Source: NHS England

Let’s talk about treatments!

There are lots of ways to manage epilepsy:

Medication:

• • Anti-seizure drugs (AEDs)
    The most common treatment, AEDs change brain chemistry to control seizures. Examples include carbamazepine, lamotrigine, and levetiracetam. 

• • Benzodiazepines
    Tranquilizers that slow the central nervous system to prevent seizures. Clonazepam is an example of a benzodiazepine. 

Surgery:

• • Focal seizure surgery: Removes the part of the brain that causes seizures.

Brain Stimulation Devices: 

• • Vagus nerve stimulation
    A device placed under the skin of the chest sends pulses to the brain to stop seizures.

• • Responsive neurostimulation
    A device implanted in the brain detects seizures and sends pulses to stop them.

• • Deep brain stimulation
    Electrodes implanted in the brain produce electrical impulses to regulate brain activity.

Diet: 

• • Ketogenic diet: A high-fat, low-carb diet that can improve seizure control.

Other Treatments: 

• Avoiding seizure triggers: If you know what triggers your seizures, you may be able to stop them by avoiding those triggers.
• Source: NHS England

We are absolutely committed to helping and supporting our members to effectively manage their epilepsy and to support them during and after their seizures, empowering  them to be active and vibrant members of our community. Our fantastic team is fully trained to recognize and to respond to seizures, including the administration of emergency medications and any other interventions that may be necessary. 

We strictly follow each individual member’s JEC (Joint Epilepsy Council) plan, which is a comprehensive and detailed document outlining an individual’s epilepsy care, treatment and management and is developed collaboratively with health care professionals and the person with epilepsy. The plan is reviewed regularly and changed and updated as required.  

Epilepsy might be a part of life but it doesn’t stop any of us from living a full, happy, and adventurous life! At the independence project we are all about embracing the moment, enjoying everything life has in store for us and making every moment count.

For more information and support regarding epilepsy, please visit:

Epilepsy Action: http://www.epilepsy.org.uk/

Epilepsy Society: https://epilepsysociety.org.uk/