E-360 Edition 18: What do you wish people knew about epilepsy?

Home > E-360 Edition 18: What do you wish people knew about epilepsy?

Seizures are only one part of epilepsy – it affects day to day life much more than people think. Epilepsy is not only characterised by the tendency to have recurrent seizures but also by its neurobiological, cognitive, psychological and social consequences.

Because you can’t see it, people in the general community have a poor understanding of epilepsy and sometimes it’s quite misunderstood. There are still age-old beliefs that should have been locked in the cupboard a long time ago.

We recently asked the question to the epilepsy community: “What do you wish people knew about epilepsy” and there were many responses. It has raised many topics for future discussion but this is a summary of the common themes of these responses.

1. Not all seizures and no two people with epilepsy are the same –  there is no one-size-fits-all treatment.

“Not all people with epilepsy have convulsions, there’s different types of seizures”

It’s complicated. Not all seizures are tonic-clonic seizures, which is what is portrayed in the media. Seizures can look like many different things, including someone staring off into the distance or fidgeting, wandering or repeating an action. Because of this, every person with epilepsy has a unique experience with seizures.

When seizures aren’t recognised in a public place, they are often ignored, managed inappropriately or the person is treated poorly or like they are drunk or on drugs.

“Not all epilepsy is the same”

2. Medication does not always work

“I feel like I have a stalker, it’s called Epilepsy”

There is no magic drug that will just stop seizures and sometimes, no medication or combination of medications work well enough to stop all seizures. People with epilepsy will often find themselves going through medication after medication without any improvement. Finding the right treatment, surgical or pharmaceutical, is sometimes very difficult.

Sadly about 1 in 3 people with epilepsy will not be able to get seizure control with medication.

“My medication doesn’t totally control the seizures”

If the first few antiepileptic medications don’t stop or control a person’s seizures, the chances that a different medication will be successful are greatly diminished. The terms ‘intractable, refractory or drug resistant epilepsy’ may be used to describe a person’s epilepsy when it doesn’t respond to medications after trialling 2 or 3 medications.

When seizures don’t respond to medication, what other options are there?

Firstly, if you haven’t already been to one, be referred to an epilepsy centre. There you will see an epileptologist, who is a neurologist that specialises in epilepsy. The epileptologist may be able to then:

  1. Trial a more appropriate medication or some of the newer epilepsy medications.
  2. Investigate if surgery for epilepsy is possible option. Some epilepsy types are suitable for surgery to help control or stop seizures.
  3. Consider dietary therapies. The types of diets currently being used are the ketogenic diet, modified atkins diet, or low glycemic diet. Usually people on a dietary treatment will still take seizure medication as well.
  4. Find out if vagus nerve therapy is an option. Vagus nerve stimulation, called VNS Therapy™ is a pacemaker like device implanted to treat seizures that don’t respond to medications or when surgery is not possible.

There are also newer types of brain stimulation and surgery, which include: NeuroPace RNS® System, Deep Brain Stimulation, or types of surgery such as thermal ablation (Visualase®) may be possible. While some of these are still being tested, others may be available.

There is no one treatment that’s right for everyone. People respond differently to medications and other forms of treatment. If you do have trouble with seizure control, seeing an Epileptologist is a good step to finding out what other treatment options may be suitable for your type of epilepsy.

Click here for more information about treatment.

3. Seizures and/or medication cause fatigue, tiredness, and pain

There is no doubt that a seizure can leave someone feeling tired and sore. It doesn’t necessarily have to be a long or severe seizure either. Immediately after a seizure many people can have symptoms such as confusion, headaches, slurred speech, feeling sick, mood changes and tiredness. Some of these feelings and symptoms disappear after a short while, and others linger.

“Epilepsy medication makes me feel very tired”

Medications also cause unwanted effects and some commonly reported ones for antiepileptic medication include:

Drowsiness, dizziness, unsteady walking, weakness, headache, difficulty concentrating, blurred or double vision, tremor, mood change such as agitation, irritability, depression, stomach upsets, and weight gain or loss. Each medication has its individual possible side effects and it is important to ask for the Consumer Medication Information about your medication as well as speak to your doctor or pharmacist.

“It’s not the danger of the seizure itself, it’s the injuries, migraine and up to two days in bed afterward that is the part that she struggles with.”

4. Memory loss

The single most common response was how the effects of epilepsy, seizures and medication affected memory.

Many people with epilepsy report having memory problems more often than the average person. A lot of things can affect one’s ability to remember, such as health, tiredness, depression, anxiety, how well we concentrate and how motivated we are to remember.

“… its very scary with the memory loss all the time and struggle concentrating in busy places as well…”

Seizures certainly do affect memory and there is some individual variation with this. Your memory for what happens during a seizure is usually lost. Seizures can also affect your memory for what happens when you are coming out of a seizure.

“I have no short term memory and I am terrified every time I go out, even with someone with me I feel lost and alone most days”

Factors for people with epilepsy that can affect memory:

  • The part of brain that causes seizures is important to memory
  • How often seizures happen
  • Seizures during sleep can disrupt sleep for the rest of the night and result in daytime sleepiness and poor memory and concentration
  • Medication side effects
  • Epileptic discharges in the brain, without a seizure occurring, also affect memory, so storage of memory is affected even if seizures aren’t happening.

Other general factors that can affect memory

  • Not getting enough sleep
  • Being stressed and overworked
  • Feeling anxious or depressed
  • Poor organisation
  • Low self esteem/poor motivation
  • Too much alcohol or recreational drugs
  • Age

Things that can help

  • Keep a bedtime routine; go to bed and get up at the same time each day
  • Try stress reduction techniques
  • Seek treatment for a mood disorder
  • Develop routings and become better organised
  • Maintain a healthy lifestyle: balanced diet, regular exercise, avoid alcohol and recreational drugs
  • When you have to remember something, pay close attention or write it down.

Practical Strategies:

Memory is crucial for day to day functioning. Some useful tips:

  • Stick to a routine – your memory will always be better if you do things in a routine manner
  • Use a diary or calendar as reminders
  • Set reminder alarms on your watch or phone
  • Use an on-body cue such as writing on your hand, or putting your watch on the opposite arm as a reminder
  • Keep important things in the same place at home
  • Place a reminder item next to the front door so you don’t forget on the way out
  • Take a photo of where you parked your car
  • When you need to remember, pay good attention
  • Take pen and paper with you if you feel you need to write things down
  • Before leaving check you have your phone, wallet and keys

Remembering medications

  • Take medications at a routine time in association with other things such as meal times or when cleaning teeth
  • Use a prepacked medication pack from your chemist
  • Tab-timer have over 300 different types of medication reminder items
  • When you take a medication, record it

“My memory is horrible… my brain doesn’t take long to get overloaded… and people have no idea how isolated it makes you feel from the rest of the world.”

“The memory loss affects the whole family”

Click here for more information about memory.

5. Epilepsy carries risks

Just like asthma and diabetes, epilepsy also has an associated risk of death. This is the most tragic outcome of epilepsy and many people who have lost a loved one were never aware it could happen.

In Australia, there are approximately 300 epilepsy-related deaths each year – but this figure is likely to be underestimated. Some of these deaths are due to:

  • accidents
  • drowning
  • seizures that don’t stop – status epilepticus
  • suicide
  • SUDEP – more than half of these deaths are thought to be due to Sudden Unexpected Death in Epilepsy.

It can be scary to think about the risk of death related to any health condition; however, by knowing the risk exists, you can take positive actions to keep yourself or your family member as safe as possible.

“We lost our 19-year-old daughter last year. We were never told she could die and not once did they tell us about SUDEP . It’s devastating.”

SUDEP

Sudden Unexpected Death in Epilepsy (SUDEP) is when a person with epilepsy dies suddenly and prematurely and no reason for death is found. SUDEP occurs in approximately 1 per 1000 people with epilepsy (1 in 4,500 children).

SUDEP deaths are often unwitnessed with many of the deaths occurring during sleep. The cause is not yet known. However, having tonic clonic seizures that aren’t controlled can put you at higher risk of injury and death.

“EVERY person with epilepsy needs to be made aware of this… his death may have been prevented if someone in the medical profession had bothered to tell us.”

There are steps you can take to reduce seizure related risks, injury or death. These include:

  1. Get the best seizure control possible.
  2. Take your medication as prescribed
  3. Speak to your doctor if you are not happy with your current medication or side effects
  4. Regular reviews with your doctor

Be involved in self-management

  1. Avoid any known seizure triggers for you
  2. Avoid drinking too much alcohol
  3. Know when your seizures are most likely to occur
  4. Get enough sleep
  5. Be healthy
  6. Manage stress

Make sure those close to you know what to do in case of a seizure.

There are a number of devices and monitors for night-time seizure monitoring now available for use in the home. They are designed to recognise a seizure or changed breathing patterns. This triggers an alarm so that help – either a family, friend or emergency services – can be notified.

“My son is 34 & I still check on him before I go to bed”

Monitors and alarms don’t guarantee safety or detection of all seizures, but they can help a great deal for some people and provide some peace of mind. Click here for more information on these products.

Click here for more about epilepsy risk.

6. Employment can be tough

The second highest response from people was in regard to employment, and this topic continues to be a problem across the board.

“Don’t treat people like they’re stupid and incapable of doing their job!”

“… you legally can’t be fired for having it…. but they can make life so uncomfortable for you that you just leave.”

Whether someone’s epilepsy affects their work depends on whether their seizures are controlled, what their seizures are like and how often these happen. It also depends on the type of work they do, and any risks that having seizures at work might bring. Anyone having seizures may not be able to do jobs that risk personal safety or the safety of other people. As with anybody, the type of work also depends on skills, qualifications and experience. It may also depend on how your epilepsy affects you.

“I have 3 types of seizures. I haven’t been able to work for over 8 years now. No one will give me a chance”

However, we still receive many calls from people who have been discriminated against, either directly or indirectly, or the workplace fails to make reasonable adjustments or has treated the person unfairly. Many people do not disclose their epilepsy in fear of losing their job. Not having a drivers license can impact significantly on work choices and independence as well.

Having epilepsy does not necessarily stop someone from doing the job they want, but there are some issues which can affect them at work.

“Unable to work – my partner lost two jobs because WorkCover wont insure him”

“I’ve been ‘relieved’, and seen as ‘unfit for duty’, from three jobs over 17 years, I’ve no licence, and my tickets for heavy machinery are no longer valid. So I lost my career.”

“Have suffered for almost 20 years now, been broke, homeless, sacked, told to lies about it to get cash in hand work, and insulted at Centrelink. I now work nights with a crappy supermarket …. I know I can’t disclose any issues here. It’s hard enough facing disrespect in your personal life, let alone at work.”

However, we also receive positive reports of employers giving people a chance and making adjustments to support the person with epilepsy as much as they can.

Employers (and other people) need to realise that while some people have regular seizures, up to 70% of people with epilepsy have their seizures controlled (with the right medication) so their epilepsy may have little or no effect on their work.

There are many disability employment service providers across Australia. People’s experience is somewhat mixed and can be reliant upon whether they have a good case worker or not. Click here to search for a disability employment provider near you.

7. It’s often not recognised as a disability

“…there are few agencies that have any idea what it means, including Centrelink and NDIS…”

Epilepsy seems to slip through the cracks when it comes to getting additional support and services. Because it is an “invisible” condition and seizures occur sporadically, it can be difficult to find help with disability funding or unemployment funding. Government services don’t recognise or understand that having seizures can impact on all aspects of life, despite the evidence that it does.

“…my daughter can’t get disability pension or NDIS…”

“my partner took 17 years to get Disability Pension. We are fighting for NDIS with a tribunal hearing on Tuesday”

“Wish the education department would recognise epilepsy as a disability, so that children/adults could obtain much needed support”

8. People don’t understand…

Although there is improved understanding of epilepsy in the general community, knowledge is still lacking and seizures are often mismanaged or misunderstood in a public setting.

“I wish they knew a lot more then they think they know”

“I wish they cared more to know more about it”

“I’m so tired of no one understanding and constantly being told that I have to suck it up and get over it”

“That people with epilepsy are actually NORMAL people”

“People don’t understand what it is like to not be able to drive, live on your own, and to be relying on others for simple things. Not being able to just have a bath to destress without someone supervising you.”

“Life can be lived with Epilepsy, other people’s arrogance towards Epilepsy is what hurts the most”

“Teaches you how to be strong and brave. I’m on this journey almost nineteen years, this disorder shaped every part of my personality and my life.”