A-Z Directory of Epilepsy Information and Services

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A
Absence seizures (typical)

Brief staring spells and a loss of consciousness lasting between 5 to 10 seconds. It is a generalised seizure often beginning in childhood. Recovery is immediate.

Absence seizures (atypical)

These brief staring spells last longer and do not start or finish abruptly as the seizures mentioned above. They can be accompanied with other features such as slight head nodding or a chewing action. Learn more about epilepsy types below.

Epilepsy Types

ACC

Will normally cover the cost of your injury as the result of your seizure. See the ACC website here for more information.

Claims helpline: 0800 101 996

Alarms

See, camera devices, EMFIT alarms, and fall detector. Be aware that there are limitations to all alarms.

Ambulance call out

If you are in need of an ambulance because of a seizure, please know that you will be billed for it unless you are a paid-up St John member. Unpaid bills will be forwarded to a debt collector and so please think about joining an ambulance service, such as St John. If you are on a benefit, you may be able to receive financial assistance to help you pay an annual subscription, under ‘Disability Allowance’.

Anti-epileptic medications

Do not cure epilepsy but help control seizures. Some medications enhance particular chemical processes within the brain and others work by blocking or inhibiting them. See fact sheet #7 for more information on epilepsy and medication.

Epilepsy Medication

See also “medications commonly used in the treatment of epilepsy” under “M” and also side effects.

Anxiety

Can affect many people with epilepsy. Please see your GP or neurologist for help and they will put a plan of action in place for you. You may be prescribed antidepressants or be seen by a ‘talking therapist” and given cognitive behaviour therapy (CBT). Mindfulness, hypnotherapy, yoga, exercise and massage may also help with your mental health.

Ariana and Jack

Is an illustrated book written and published by EWCT to help improve the quality of life for children living with epilepsy. Buy your copy here.

Atonic seizures

A brief loss of unconsciousness and a person’s muscles slacken and he/she may fall to the ground. Atonic seizures used to be called ‘drop attacks’. See our fact sheet on ‘epilepsy types‘ for more information.

Epilepsy Types

Auras

Are focal-aware seizures that many see as a warning that a ‘bigger seizure event’ may happen. An aura can last several seconds, or minutes, and it can give people an opportunity to make themselves safe. Some people are unable to describe these ‘auras’ but many can experience things such as tingling/painful/electric shock or even numbness sensations. They may see flashing/ flickering lights or go temporarily blind. They may be able to smell unpleasant odours, experience acidic, bitter, salty, sweet or metallic tastes or have unusual gut sensations. Some people are able to hear voices or hallucinate.

Automatisms

Are repetitive movements that are found in focal seizures with awareness impairment (focal impaired awareness) and well as in some absence seizures.

The types of repetitive behaviours depends on the location of the seizure activity in the brain and, are generally found in the temporal and frontal lobes, although it is possible for automatism to appear in the parietal and occipital lobes.

Automatisms in the temporal lobes can include behaviours such as lip smacking, chewing, swallowing, fumbling, picking, grunting, screaming, undressing, repeating a word, repetitive tapping. Automatisms in the frontal lobes can include such behaviours as cycling movements, turning the head to one side, pelvic thrusting.

See our fact sheet on ‘epilepsy types‘ for more information.

Epilepsy Types

B
Be empowered

Learn how to manage your epilepsy positively. See fact sheet ‘Be empowered‘ for more information.

Be Empowered

Benefits

Find out which of the “Work and Income” (WINZ) benefits that you are entitled to: https://www.workandincome.govt.nz/online-services/index.html
https://www.workandincome.govt.nz/products/a-z-benefits/index.html

Phone: 0800 559 009 if you are under 65 years old
Phone: 0800 552 002 if you are over 65 years old

Work and Income managers do not necessarily understand epilepsy, and how it affects you, and so please take along an advocate to your appointments if you need help.

Ben’s Buddies

Is an illustrated book written and published by EWCT to help de-
mystify the epilepsy condition. Buy your own copy here.

Ben’s Buddies – Epilepsy Children’s Story Book

Brain

Along with the spinal cord, makes up the human central nervous system. It controls our breathing, our beating heart, our ability to use our senses, how we receive and gather information, and even our behaviour and personality. The major parts of the brain consists of two halves (the left and right hemispheres) and each half is divided into four lobes (temporal, frontal, parietal and occipital). See fact sheet ‘The brain’ below for more information.

The Brain

C
Camera devices

Various surveillance-specialty shops will tailor-make your audio and video requirements for monitoring loved ones with epilepsy. Information is sent to a smart phone via an app.

For an example see the SAMi™ device on this page.

Care plus

Is an intensive care programme aimed at people with chronic health conditions, serious medical/mental health needs, or a terminal illness so that they may be more effectively managed by their health care team. To see if you are eligible please ask your GP.

Catamenial epilepsy
Causes of epilepsy

There are some known causes of epilepsy (symptomatic) such as brain tumours, birth trauma, head injury, brain infections, genetic abnormalities, premature birth. However, in most cases, there is no known cause (idiopathic) as to why a person has epilepsy but it would usually be genetic or inherited.

Children

Make up a large group of people with epilepsy. See fact sheet ‘Children and epilepsy’ below for more information.

Children and Epilepsy

Continuity and quality of epilepsy care is essential

Please develop a good relationship with your preferred GP and make the most of your 15-minute appointments. Be prepared. You are allowed to take someone to help you. Take along your EWCT seizure diary if needed.

  1. Take a list of your medications. Say if you are having problems with them.
  2. Make a list of your main health concerns.
  3. Have any questions answered to your satisfaction 4) Arrange a follow-up visit if needed.
Convulsive seizure

Would you know what to do if some one is having a seizure?

Visit our fact sheet below for more information on what to do if someone is having a convulsive seizure,

What to do if someone is having a convulsive seizure

Teach children what to do using these children’s fact sheets:
Chatterbox-puzzle.pdf
What to do if someone is having a seizure.pdf 

Cooking

Can be hazardous when you have epilepsy. Learn how to cook safely. For more information and advice see how fact sheet below.

Safe cooking strategies for people with epilepsy

D
Déjà vu

Some people with focal-aware seizures can experience Déjà vu (feeling of being there before, but never have).

Diagnosis and treatment

Are made by an epilepsy specialist. There is no test for epilepsy and doctors are partly reliant on eye witness accounts of what has been observed. See fact sheet #18 on Epilepsy diagnosis and treatment.

Epilepsy Diagnosis and Treatment

Disability allowance

Covers certain types of costs

  • alternative treatment
  • ambulance fees and subscriptions
  • authorised consumables
  • clothing
  • counselling
  • day care for the elderly disabled
  • gardening, lawns and outside window cleaning
  • gym and swimming pool fees
  • medical alarms
  • medicAlert costs
  • medical fees
  • nicotine replacement products
  • pharmaceutical charges
  • power, gas and heating
  • private paying patients
  • rental equipment
  • residential care services
  • special foods
  • telephone
  • transport-counselling
  • transport-disability
  • transport- personal health
  • vitamins, supplements, herbal remedies and minerals For more information see “Benefits”
Driving and epilepsy

There are risks associated with driving whilst having epilepsy. If you have epilepsy you may also be excluded from driving a mobility scooter and battery- powered wheelchair. You will need to seek advice from your GP or neurologist. See our ‘driving and epilepsy’ fact sheet below.

Driving and Epilepsy

DSL

Disability Support Link is an assessment and service coordination service that assists in obtaining home support services for people with disabilities in the Waikato, King Country, Thames Valley and Peninsula and may include:

  • Household assistance
  • Personal care
  • Day programmes (non-therapeutic)
  • Carer support
  • Residential care and support
  • Referral to other services

Referrals can be made by clients, their family/whanau, GPs, a health professional, disability groups/organisations or a friend.

For more information, please phone:

Hamilton are (07) 839 1441 or 0800 55 33 99

E
Education

Is a fundamental human right and students cannot be excluded or treated less favourably because of epilepsy. See the ‘how to help a student with epilepsy‘ fact sheet below.

How to help a student with epilepsy

Your child may be eligible to assistance whilst at school. Please ask about ‘High Needs funding’.

EEG

(electroencephalograph) is used as a diagnostic tool which measures brain activity.

Small electrodes are placed on the person’s head with a sticky paste and the computer records electrical activity occurring in the brain. See Kieran’s EEG story for:

Kieran has an EEG

Emergency number in New Zealand is 111

For fire, police and ambulance Show children how to dial the emergency number (How-to-dial-111-for-an- ambulance.pdf)

Emfit Epileptic Tonic-Clonic Seizure Monitor

Is designed for monitoring and detecting seizures with muscle jerking of a sleeping person with epilepsy. Available in New Zealand through reidtechnology.co.nz

Employment

On many job application forms you are asked to disclose if you have a disability or health condition that could affect your ability to work. If there is no specific question on the application form, then there is not necessarily any need to reveal it.

Most people with epilepsy (at least 70%) are well controlled with medications and they work in a wide variety of jobs where their epilepsy does not impact on their safety or the safety of others.

Do your own research about a job that potentially suits your qualities, your qualifications, interests and skills, and at the same time consider your epilepsy condition. Complete the “careers quest quiz” if you need inspiration in choosing a career.

Some jobs have known occupational hazards that would pose even greater risks to people with epilepsy, and you would automatically be barred from applying for them.

Use your common sense when applying for jobs. Be positive and seek help in finding employment. Most people find jobs through word of mouth and so you need to sell yourself. You could try organisations such as Workbridge or Enrich Plus that help people with disabilities find employment.

If you have not disclosed that you have epilepsy, it may nevertheless be useful to do so just in case you have a seizure at work. Let your colleagues know what sort of seizures you have and devise an action plan so that everyone knows how to help you should you have one. You may need to have a conversation with your boss to discuss why you need some time off now and then for a neurology appointment or to recover from a seizure. It is about being reasonable and fair.

Employers and employees are governed by the “Health and Safety in Employment” Act and reasonable care must be taken to ensure everyone’s safety, including yours.

Epilepsy

Is a neurological condition caused by a burst of abnormal activity in the brain causing seizures. Seizures generally lasts for a brief period of time and result in an alteration in sensation, behaviour and consciousness. There are over 40 different seizure types and many ways in which they are presented. Seizures can be described as ‘generalised’ or ‘focal’. See the ‘what is epilepsy‘ fact sheet for more information.

What is epilepsy?

Epilepsy action plan

See your EWCT epilepsy advisor who will help develop a personalised epilepsy action plan for you.

Epilepsy awareness month

For EWCT is in November and is advertised through our webpage. You will find a calendar of epilepsy facts and a list of famous people who have (or had) epilepsy. Please get behind EWCT and help to break down the epilepsy stigma.

Epilepsy awareness seminars

Book your epilepsy awareness seminar with your EWCT epilepsy adviser maria@ewct.org.nz or info@ewct.org.nz

Epilepsy types

There are at least 40 seizure types and it is regarded as a spectrum of disorders. See the ‘epilepsy types‘ fact sheet for more information.

Epilepsy Types

EWCT epilepsy advisor

Gives advice, support and information. See ‘what we offer‘ for more information.

What We Offer

F
Fall detector

Is useful for those who fall during a seizure. If a fall occurs, the intelligent sensors within the detector analyse the event for 20 seconds. After 20 seconds, it lights up and emits warning tones, indicating that an alarm call is about to be place. At this point any accidental activation can easily be cancelled by the wearer at the press of the cancel button.

There is a help button that can be pressed at any time for assistance. This will connect you with Bupa’s response team, who will get you the help you need, and stay in touch until they know that you are safe.

For more information please contact:

Bupa Medical Alarms 0800 60 80 99 or www.bupa.co.nz

Famous people with epilepsy

“There have always been people with epilepsy. Since the dawn of time, epilepsy has affected millions of people from beggars to kings. It is one of the oldest conditions of the human race”. You will discover some names of famous people are who have lived with, or live with, epilepsy by completing our word-find.

Be Empowered

Focal seizure

Is intense electrical activity that occurs in an area on one side of the brain. What these seizures look like depends on which area of the brain is affected. See the ‘epilepsy types‘ fact sheet for more information.

Foetal anti-epileptic convulsant syndrome

Some anti-epileptic medications, such as Epilim, may affect the unborn baby. For more information please see: http://www.facsnz.com/about/

G
Generalised seizures

Occur on both sides (hemispheres) of the brain and they result in a degree of unconsciousness. There are various generalised seizures: tonic, atonic, myoclonic, tonic clonic, typical and atypical absence seizures.

GP visits

Your GP (doctor) will take responsibility for your epilepsy condition with regard to prescribing your medications, making sure that your seizures are under control, and that you are feeling well.

http://www.health.govt.nz/your-health/services-and-support/health-care-services/visiting-doctor

Green prescription

If your epilepsy is under control, and you need support to improve your general health and wellbeing, then a green prescription may help you. Ask your doctor or phone 0800 ACTIVE (22 84 83).

H
Health passport

Is not a medical record but it gives information about the things that are important to you for when you are receiving hospital care. Ask for your health passport from the Health and Disability Commissioner.

Email: healthpassport@hdc.org.nz or
Phone: 0800 111 2233
Website: www.hdc.org.nz

Healthline

Is a free 24 hour/day health and medical advice service. Please phone 0800 611 116 to speak to a specialised Healthline nurse.

Health shuttle

St John, in Hamilton, offers a free community service that transports people to essential medical and health-related appointments, and then takes them home again. There is no charge for the shuttle transport, but a donation is appreciated to cover costs. St John does not offer this service in all areas.


To find out more about St John Health Shuttle, or to book a journey, call toll free on 0800 000 606

Health Transport Services in the Region:

Coromandel
Coromandel Independent Living Trust
Tiki House
45 Tiki Rd
(07) 866 8358

Kawhia
Ngati Maniapoto Marae Pact Trust
(07) 878 6234

Matamata
NZ Red Cross
Te Rapa Rd
Hamilton
(07) 849 0285 -press the extension for the Waikato Services Centre

Matamata Community Health Shuttle
(07) 888 6040 or at
Matamata Citizen’s Advice Bureau
Railside by the Green.
41a Hetana Str

Morrinsville
NZ Red Cross
Te Rapa Rd
Hamilton
(07) 849 0285 -press the extension for the Waikato Services Centre

Otorohanga
NZ Red Cross
Te Rapa Rd
Hamilton
(07) 849 0285 -press the extension for the Waikato Services Centre

Paeroa
Paeroa Community Support Trust
Cnr Mackie and Willoughby Streets
Paeroa
(07) 862 6110

Putaruru
Tokoroa Hospital Reception
(07) 886 7239

New Zealand Red Cross
Te Rapa Rd
Hamilton
(07) 849 0285 -press the extension for the Waikato Services Centre

Raglan
Raglan Community House Society
Bow Street
Raglan
(07) 825 8142

Tairua
Tairua Care and Friendship Club
(07) 864 9550

Taumarunui
Taumarunui Kokiri Community Trust
(07) 895 5919

Taumarunui bus
Waikato Hospital co-ordinates this transport
(07) 838 8899 ext 96125 (enquiries desk)

Te Aroha
New Zealand Red Cross
Te Rapa Rd
Hamilton
(07) 849 0285 -press the extension for the Waikato Services Centre

Te Awamutu
Taumarunui bus
Waikato Hospital co-ordinates this transport
(07) 838 8899 ext 96125 (enquiries desk)

Or try Red Cross
Te Rapa Rd
Hamilton
(07) 849 0285 -press the extension for the Waikato Services Centre

Te Kauwhata
Rural Women NZ -Te Kauwhatu
(07) 826 3980

Te Kuiti
Taumarunui bus
Waikato Hospital co-ordinates this transport
(07) 838 8899 ext 96125 (enquiries desk)

Thames
Te Korowai Haurora o Hauraki
210 Richmond Street
Thames
(07) 868 5375

Tokoroa
Tokoroa Hospital reception
(07) 886 7239

Waharoa
New Zealand Red Cross
Te Rapa Rd
Hamilton
(07) 849 0285 -press the extension for the Waikato Services Centre

Waihi
The Order of St John
Johnston Street
Waihi
(07) 863 8666

Whangamata
Whangamata Community Services Trust
101 Casement Rd
Whangamata
(07) 865 7065

Whitianga
Whitianga Community Services Trust
2 Cook Drive
Whitianga
(07) 866 4476

High Needs Funding

Supports students who have health needs as a result of a significant health condition and who would need care for more than 6 weeks. The fund does not cover seizures that occur infrequently, or in clusters, with long seizure-free periods. The fund, however, will cover a student with supervision around medication, toileting/showering, playtime activities and anything requiring support in swimming, science and technology.

More information can be found on the education.govt.nz website here.

I
ID alert

Bracelets, necklaces and wallet cards improves the safety and medical care of a person with epilepsy, in public. You can view a list of options at:

  1. Medic Alert (https://www.medicalert.co.nz/)
  2. Mediband (Australia) https://www.mediband.com/au/epilepsy-mediband
Idiopathic epilepsy

Means seizures of unknown cause but are usually genetic or inherited.

ILAE

International League Against Epilepsy https://www.ilae.org/about-ilae

Imitators of epilepsy

Are those seizures that mimic epileptic ones such as in febrile convulsions, fainting, mini strokes, sleep disorders, movement disorders, panic attacks, psychogenic and low blood sugar seizures. These ‘imitators’ can lead a doctor in making a wrong diagnosis of epilepsy.

J
Jamais vu

Some people during a focal-aware seizure can experience Jamais vu (a feeling that something is very familiar but it isn’t)

Job support funds

Are available from Workbridge to assist people with disabilities in New Zealand to enable them to participate in open employment. The funds include: job support, training support and self− start. Please discuss your options with a Workbridge staff member: 0508 858 858

K
Ketogenic diet

Is a very specialised diet designed to control seizures in children (largely) that have intractable epilepsy. It is a high fat, low carbohydrate and adequate protein diet. Parents interested in this diet for their children would need to discuss this option with their child’s paediatrician and a specialised dietician.

L
Live well with epilepsy

Find PEACE and become a member of EWCT.

Living with the challenges

See our fact sheet on living with the challenges of epilepsy below.

Living with the challenges of epilepsy

M
Medications commonly used in the treatment of epilepsy in New Zealand

Carbamazepine (Tegretol)
Clobazam
Clonazepam
Ethosuximide (Zarontin)
Gabapentine (Neurontin)
Lamotrigine (Lamictal)
Leviteracetam (Keppra)
Nitrazepam (Nitepam, Mogadon, Insoma 5, Nitraclos)
Oxcarbazepine (Trileptal)
Phenytoin (Dilantin)
Primidone (Mysoline)
Sodium Valporate (Epilim)
Tiagabine (Gabitril)
Topirimate (Topamax)
Vigabitrin (Sabril)

Medication side-effects

All AEDs have a list of possible side effects. “Start low and go slow” helps to minimize the effect of AEDs on your body. Please watch for:

  • Behavioural changes (especially in children), irritability, mood changes, drooling
  • Memory issues
  • Gum swelling, acne, increased body hair, weight gain, weight loss
  • Dizziness, double vision, insomnia, headaches, drowsiness, nausea
  • Pins and needles feeling of hands and feet
  • Rashes

See our fact sheet on ‘epilepsy and medication‘ for more information.

Medsafe (New Zealand Medicines and Medical Devices Safety Authority)

Is responsible for the regulation of medicines and medical devices and ensure that medicines and medical devices are acceptably safe. You can find information about the medications that you are taking at medsafe.govt.nz.

Memory loss

Is challenging for most people at some point in their lives, and for people with epilepsy, it is not unusual. Memory loss can occur because of seizure activity within the brain, which disrupts memory processes, and sometimes because of the use of antiepileptic drugs (AEDs) which can cause drowsiness or attention problems.

Visit fact sheet ‘epilepsy and memory‘ for more information.

Motherhood

You will find helpful tips as a mother with epilepsy here:

Epilepsy and Motherhood

MRI

(magnetic resonance imaging): uses magnetic fields to detect structural abnormalities in the brain such as tumours and scar tissue.)

Myoclonic seizures

literally means muscle jerks.

N
Neurologist

Treats disorders that affect the brain, spinal cord, and nerves; neurologists do not perform surgery, that is done by a neurosurgeon. A neurologist will be involved in the diagnosing and treatment of epilepsy.

Neuropsychologist

Is a specially trained psychologist who understand the relationship between the physical brain and behaviour.

Non-epileptic seizures (NES)

Are often described as pseudo-seizures. They have a different cause but they can look similar to epilepsy and can affect people in similar ways. NES are not the result of a disruption of electrical activity in the brain.

O
Observation

Of what you see, when someone is having a seizure, helps with a diagnosis and classification of epilepsy and hence possible treatment. You may find the table in “recording seizures’ helpful in describing them. Using a camera or mobile phone as part of your observation also helps the neurologist in reaching a diagnosis.

P
Paediatrician

Is a specially trained doctor who manages the health and wellbeing of children.

Parent to Parent

Is a nationwide support and information service. Free phone 0508 236 236 or parenttoparent.org.nz

Pharmacists

Are important people in your epilepsy care team. They prepare your medications and provide free, confidential and professional advice about your anti-epileptic medication.

They will discuss possible side effects, how to take your medication properly, and possible interactions with other medicines such as the contraceptive pill, alcohol, recreational drugs or natural therapies that you may be taking. Do not adjust or stop taking your medications except on the advice of your epilepsy specialist. Make sure that you never run out of your medications. Plan around public holidays and travel.

If you intend travelling, take enough medications for your trip and a copy of your prescription. Seek advice from your pharmacist should you be taking an overseas trip. See our fact sheet on epilepsy medication for more information. Visit Fact sheet 7 for more information on epilepsy medication.

Photosensitive epilepsy

Affects about 3% of the population and is more commonly found in children and adolescents than in adults. Seizures are triggered by flashing lights or certain visual patterns.

Prescription subsidy

Each prescription is charged at $5. You become eligible for the subsidy once you have paid for 20 new prescription medicine items from 1 February each year. Ask your pharmacist if you qualify for the subsidy. Visit this page on health.govt.nz for more information.

Prodrome

Refers to an observed change in mood or behaviour in a person with epilepsy, hours or days before a seizure happens. Behaviours can include feeling angry, irritable or anxious.

Public transport

For more information about Hamilton’s bus timetable, bus routes and fares, please go onto http://www.busit.co.nz/Hamilton-routes/ Seek out small town transport providers at your local Citizen’s Advice Bureau (CAB) or information centre, if you live outside of Hamilton.

Q
Questions about maternity care

Pregnancies should be planned, at least a year in advance, as this enables the neurologists to review your anti-epileptic medication. Some AEDs can affect the development of the unborn baby and so specialist advice and support are essential at least 3-6 months before starting a family. Most babies are born healthy to mothers who are taking AEDs.

AEDs affect your body’s ability to absorb folic acid and so it is advisable that you take higher-than-usual doses to prevent nervous system defects such as spina bifida in your developing baby. Iodine supplements are also recommended. Your specialist will prescribe an AED that gives you best seizure control whilst protecting your baby from its side effects. Any risks will be kept to a minimum. The effect of being pregnant is unpredictable in all women. Some may experience an increase in their seizures whilst others can have a decrease.

R
Recording seizures

Here is a useful vocabulary list to explain what happens during a seizure. You may find this useful when describing your seizures. What do they look like?

Awareness Facial expressions Head movements Body stiffens Jerking Automatic movements Speech
Fully aware Staring Sudden head drop Whole body (If just one side, note which side) Whole body Hands clapping/
rubbing
Able to talk normally
Confused Twitching Turns to one side (note which side head turns to) Legs Legs Lip smacking/
chewing
Unable to talk
Responds
to voice
Eyes rolling Turns side-to-side Arms Arms Walking/
wandering
Incoherent/
nonsense words
Responds to light touch Eyes blinking Running Mixing up words
Not responsive
Loss of consciousness yes/no
Incontinence yes/no Bowel motion yes/no
Risk management plans for teachers

The welfare and safety of all children in a school are paramount and so a number of factors need to be considered in developing risk management plans for individuals with epilepsy.

For more information visit the ‘risk management planning for teachers‘ fact sheet below.

Risk Management Planning for Teachers

S
SAMi™

SAMi™ is a sleep activity monitor for anyone (caregivers and individuals) who needs to watch carefully for unusual movements at night. During sleep, audio-video information from a remote infrared video camera is sent to an app that runs on an iOS device such as an iPhone or iPod Touch. The SAMi app records and analyzes the video for unusual activity. When an unusual event is detected, it sounds an alarm and records live audio and video from the SAMi network camera. Within seconds, the individual or caregiver can take any necessary action.

Safety in the home

The home is the most common place for seizure-related accidents, followed by in the street and workplace. For more information see our fact sheet on ‘safety in the home‘:

Safety in the Home

Seizure diary

Is an important tool to manage, record and keep track of seizures and epilepsy. It can be used to keep track of medications, side effects, seizure frequency and for help in identifying potential triggers.

Please contact Maria on maria@ewct.org.nz if you would like to receive a free copy.

Seizure threshold

Is the level of brain stimulation in which a person has genetically been programmed to have a seizure. A person with epilepsy has a lower-than-normal seizure threshold and therefore his/her brain is less resistant to seizures.

Seizure triggers

Are events or situations that can lower the seizure threshold and make a person more vulnerable to seizures. If you learn which things may trigger your seizures, then you and your GP can learn to manage your epilepsy more effectively.

Get a free copy of a seizure diary from your EWCT epilepsy advisor to help you to record your seizures. Some common seizure triggers include missed medications or medication change, tiredness or sleep deprivation, stress, alcohol and recreational drug use, feeling unwell and menstrual periods in women.

Sleep

The lack of sleep, and missed doses of medications, are common causes of increased seizure frequency. It is important to get good quality sleep, between 7-8 hours per night, although some people can thrive on fewer hours.

If going to sleep is a problem, then a having a bedtime routine could be helpful to you such as going to bed at a regular time each night, not drinking alcohol or caffeine beforehand, not eating too late, turning off all your computer/phone/ipad gadgets much earlier and perhaps taking a warm shower before falling into a comfortable bed in a dark room, devoid of distractions and noise.

Having seizures at night can make people sleep deprived, as can sleep disorders and side-effects of some medications. Please consult your GP for help if you are not able to get regular good sleep.

Smoking cigarettes and epilepsy

Despite the ills of smoking tobacco (including the possibility of SUDEP) and the proven likelihood of developing smoking-related illnesses (such as strokes, cancer, emphysema and heart attacks), many people with epilepsy use smoking as a stress reliever.

New Zealand is increasingly becoming a smoke-free environment, and there are Quit Smoking programmes available to try, but a conversation with your GP is important in choosing the right programme for you.

St John protocols

What are they? Visit the page below for more information.

St John protocols

St Valentine

Is the patron saint of epilepsy.

Stroke

A small number of people develop epilepsy after a stroke.
Know the signs and symptoms of a stroke:

For more information visit www.stroke.org.nz or contact the Stroke Foundation on 0800 787 653.

SUDEP (Sudden unexpected death in epilepsy)

Is a rare and unwitnessed event of someone dying during, or after, a seizure, where no other cause of death can be found. The exact cause of death is not known but a person with epilepsy may have had difficulties with breathing or heart problems, or a combination of both.

A known risk factor of dying of SUDEP is having uncontrolled or poorly controlled seizures, especially convulsive ones. To minimise the risk of dying of SUDEP it would be advisable to take your anti-epileptic medications routinely every day, being vigilant around seizure triggers, and recording all your seizures in a seizure diary so that regular health and medication assessments can be made of your condition.

Using a seizure mattress alarm and anti-suffocation pillows may help, since SUDEP generally happens during sleep.

Syndrome

is a group of signs and symptoms that, when added together, suggest a particular medical condition. An epilepsy syndrome has seizures as the central symptom but also includes other features such as specific EEG readings and age dependency.

Here is a useful webpage detailing all of the epilepsy syndromes:
https://www.epilepsy.org.uk/info/syndromes/aicardi-syndrome

T
Teenager’s guide to living well with epilepsy
The Code of Health and Disability Services Consumers’ Rights

The Code of Health and Disability Services Consumers’ Rights (0800 11 22 33)

Means that you should have:

  • respect and privacy
  • fair treatment
  • dignity and
  • independence
  • appropriate standards
  • effective communication
  • information choice and consent support
  • rights during teaching and research
  • your complaints taken seriously
Total mobility scheme

Is a subsidised taxi service using vouchers or electronic cards that gives 50% on normal taxi fares. To find out if you are eligible to receive these taxi vouchers please contact: maria@ewct.org.nz,

U
Uncontrolled epilepsy

Can also be known an ‘intractable’, ‘refractory’ or ‘drug resistant’ epilepsy and it severely interferes with the quality of life for those living with the condition. For those deemed to have uncontrolled epilepsy, questions would be asked around the epilepsy diagnosis, treatment and life style of the person. Good communication with a trusted neurologist is important in gaining a long-term solution to a difficult problem.

V
Vaccinations

Should be discussed with your GP and/or epilepsy specialist.

Vagal nerve stimulator

Is a small, electrical device, similar to a pacemaker, which is placed in a person’s chest under general anaesthetic. A thin wire runs from the device to the vagus nerve and sends out electrical impulses at regular intervals to reduce the severity of seizures, or even stop them.

W
Who develops epilepsy?

A person of any age, can develop epilepsy regardless of their IQ, ethnicity, and social standing. Epilepsy is commonly found in children, under the age of two years, and the elderly over the age of 65 years old. Around 1 in 100 people have epilepsy, which is about 43,000 New Zealanders and about 70 million people globally.

X
X-radiation (X-ray)

Is a form of electromagnetic radiation widely used in medicine and science. Medical uses include the widely known radiographs (classic 2-dimensional X-ray images) and computed tomography (CT) scans (cross sections or ‘slices’ converted to 3 dimensional images).

Y
Your medical record

is available to you on request. Ask your GP.

Z
Zero fees

For all children under the age of 13 years to see a GP in New Zealand. See health.govt.nz for more information.