Difficult times ahead
COVID-19 has changed the way we live. There is still a lot of uncertainty and it is understandable that people may be feeling concerned about the changing alerts and media coverage regarding the effects of this virus.
While it is important to stay informed and follow the advice regarding keeping yourself and others safe, you also need to look after yourself and possibly others in your family.
Just remember, it is not always going to be like this.
COVID-19 Booster Update
Please Click Here to go to the Australian Government website for further information about the COVID-19 Booster Vaccines
Common COVID-19 questions asked
We have been receiving some questions from our community about what COVID-19 means for people with epilepsy. Below, we answer just some of these questions.
Click here for the WHO update on the new variant Omicron
If you have questions not answered here, please feel free to contact our:
National Epilepsy Line on 1300 37 45 37 or email [email protected]
Q: Are people with epilepsy more likely to get COVID-19?
A: People with epilepsy are not more at risk to contract coronavirus, nor should it increase the viruses severity or impact on you. Still, we do recognise that respiratory and fever symptoms could trigger seizures in some people with epilepsy and have a bigger impact on people who have a coexisting or complex medical condition.
One point to note however, some medicines infrequently used to control seizures, may affect your immune system. These are medications used in a minority of people with epilepsy who require treatment with immunotherapies such as adrenocorticotropic hormone (ACTH), corticosteroids (dexamethasone, hydrocortisone, prednisone/prednisolone, and methylprednisolone) or intravenous immunoglobulin (IVIG). You will need to take additional precautions if you or your child is taking these medications and should discuss this further with your general practitioner (GP).
Q: Can COVID-19 increase seizures in a person living with epilepsy?
A: Coronavirus symptoms can range from mild illness to pneumonia. Some people will recover easily, and others may get very sick very quickly. During this illness, the body will be under physical and emotional stress.
Seizure triggers differ for everyone, but some symptoms of COVID-19, particularly a fever, may affect some people and possibly cause or increase seizures, as will being extremely unwell. If you become unwell, try and maintain healthy eating and keep your fluids up by drinking regularly. If your seizures worsen and you are concerned, contact your doctor.
Q: How can I protect myself from getting COVID-19?
A: These steps below can lessen your chances of catching COVID-19.
- Practice social distancing or voluntary isolation as much as possible
- Practice good hygiene:
- Wash your hands regularly – in particular after returning home after being outside, before and after eating, and after touching surfaces such as door handles, stairwell rails, shopping trolleys and petrol pumps.
- Avoid close contact with people who are sick.
- Avoid touching your eyes, nose and mouth.
- If you are sick, stay at home and isolate from family.
- Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.
- Wear a mask in public places, particularly in areas where you have close contacts such as public transport or supermarkets.
- Check the restrictions specific to your state, as they are changing all the time
Find more information from the Australian Government Department of Health or the National Coronavirus Helpline on 1800 020 080
Q. Is it safe for people with epilepsy to get the COVID-19 Vaccine?
Some people with epilepsy have concerns about getting vaccinated, but there is currently no evidence to suggest that having epilepsy is specifically associated with a higher risk of side effects from a COVID-19 vaccine (ILAE).
For people with epilepsy, the risk of COVID-19 infection and potential complications far outweighs the risk of side effects from a COVID-19 vaccine. As with other vaccines however, a fever can develop after a COVID-19 vaccination. This could lower the seizure threshold in some people. Medications such as paracetamol can taken regularly for 48 hours after the vaccination (or for the duration of fever) will lessen this risk.
Before you receive a COVID-19 vaccine, make sure to let your doctor or healthcare provider know that you have epilepsy, as well as any other important medical information, such as:
- Allergic reactions to prior vaccines (e.g. flu vaccine)
- Current or recent fever or infection
- Medications you are taking, especially medications that suppress the immune system or blood thinners
- If you are pregnant or breastfeeding, or plan to become pregnant
As with any vaccine, you should not receive the COVID-19 vaccine if you are allergic to any of its ingredients. You should not receive a second dose if you had an allergic reaction to the first dose.
Speak to your doctor or neurologist if you want any further information regarding the COVID-19 Vaccination.
If you already received the COVID-19 vaccine, it is important to continue wearing a mask and social distance. The current vaccines reduce your risk of getting sick from COVID-19 by up to 90%, depending on the vaccine, but vaccinated people may still be able to spread COVID-19 to others without knowing they are carrying it. (ILAE March 2021)
Q: When will I get the COVID-19 vaccine?
Learn about the program phases and when you may be eligible to get the COVID-19 vaccine here
The following people are now eligible for the COVID-19 vaccine:
- NDIS participants aged 16 years and over, and
- Carers aged 16 years and over of NDIS participants of any age
- People aged 12 to 15 are eligible to get vaccinated if they meet the following criteria:
- children with specified medical conditions
- Aboriginal and Torres Strait islander children
- children in remote communities, as part of community outreach vaccination programs
- National Disability Insurance Scheme (NDIS) participant, or living with disability requiring frequent assistance with activities of daily living, including down syndrome, muscular dystrophy, traumatic brain and spinal cord injury, and severe intellectual disability.
Q. How does AstraZenica compare to Pfizer vaccine?
That is not a question we can answer. For more in-depth information about these vaccines we strongly suggest you speak to your doctor. There is also more information here
Australia is now administering the Moderna Vaccine as well.
Q. Will the vaccine affect my medications or vice versa?
If you take regular medication and are concerned about what it might mean for getting the COVID-19 vaccine, talk to your doctor or healthcare provider. They can help you understand how likely it is that your specific medication could be affected.
For most people, the recommendation will be to continue to take your medications normally and to keep yourself safe by getting vaccinated as soon as you can.
Q: What are the side-effects and where can I report any side effects of the COVID-19 vaccines?
Vaccines, like any medication, can have side effects. Side effects to vaccines, if they occur, are generally minor and temporary, but very occasionally people with have a more severe reaction. It is very important to report any significant side effects.
If you have any different, concerning or serious side effects, including seizures, it is important to report them. That way they are recorded and provide information about the vaccines for future reference.
You can find information about the possible side effects of COVID-19 vaccines:
- on the Health Direct website or
- in the relevant Consumer Medicine Information for the specific vaccine.
There are many ways to report your side effects, including:
Report to your doctor or health professional
Report to the NPS MedicineWise Adverse Medicine Events line
You can make a report and obtain advice from a pharmacist by calling the NPS MedicineWise Adverse Medicine Events line on 1300 134 237 (8am-8pm seven days a week).
Report directly to the TGA
Anyone can submit reports directly to the TGA. Visit www.tga.gov.au/reporting-problems for further details.
Report to your state or territory health department
Reports can be made directly to the relevant state or territory health department (see details below). These reports are then submitted to the TGA and entered into the Adverse Event Management System (AEMS).
|Where to report in each state / territory|
|NSW||NSW Health website|
|Queensland||Queensland Health website|
|Western Australia||WA Department of Health website|
|ACT||ACT Health website|
|South Australia||SA Health website|
|Northern Territory||NT Department of Health website|
|Tasmania||Tasmanian Department of Health|
Q: Will the situation with coronavirus lead to shortages of my epilepsy medicine?
A: The Australian Government has approved several temporary changes to medicines regulation to ensure Australians can continue to access the PBS medicines they need, as the COVID-19 outbreak unfolds. The TGA has not received any notifications of prescription medicine shortages in Australia as a direct result of COVID-19. Some people may have experienced shortages at their local chemist, but this is related to that chemist. However, it is a good idea to ensure you have at least two weeks supply of medication at home in case you get quarantined. If you are unable to source your medication, speak isto your local pharmacist or contact your GP or neurologist to discuss your options.
Q: What is the medication home delivery service?
The Home Medicines Service is available for people in home isolation and for vulnerable patient groups who wish to limit their potential exposure to novel coronavirus (COVID-19) in the community. To qualify for the Home Medicines Service each single delivery to an eligible person’s home must include at least one of the following items:
- a PBS medicine or
- a RPBS medicine.
You can order other items to be delivered to you from the pharmacy, if it is part of the same order.
You can receive the free service no more than once per month.
The Home Medicines Service is available from participating pharmacies across Australia. Contact your pharmacy to find out more. For more go to Home Medicine Service
Q: What does self-isolate mean?
A: You need to self-isolate in your home (or hotel) if you think you have been in contact with a person infected with COVID-19, or if you arrived from overseas or interstate, even if you’re showing no symptoms. Self-isolation is not the same as social distancing.
Self-isolation means you need to stay at home to reduce the risk of transmission. No public places like work, school, childcare or university, and no public gatherings. Only people who usually live in your household should be in the home, so it’s important you don’t have visitors during the isolation period. If you are in a hotel, you should avoid contact with other guests or staff. If you’re self-isolating but feeling well, there is no need to wear a surgical mask at home.
If you need to leave the house, such as for a medical appointment, wear a mask to protect others. Where possible, order food online or ask friends, family or neighbours who are not in isolation to pick up food and necessities for you, and leave them at your front door.
To lessen the spread of germs (especially if you live with others), you should regularly clean frequently-touched surfaces (like doorknobs) and wash your hands — frequently and thoroughly.
Police have the power to force people to comply with self-isolation, with large fines for people who flout the rules. Elsewhere, self-isolation has helped curb the increase of coronavirus transmission.
For more on self-isolation
Q: What are the social distancing rules?
While we use the term “social” distancing, “physical” distancing is probably a more accurate way to describe it. In the current context, social or physical distancing refers to when you are out of the home, stay at least 1.5 metres away from people to help avoid getting sick. It means to limit your outings to essentials only – work, grocery shopping, exercise, collecting medications or attending necessary appointments. Non-essential gatherings have numbers restrictions that may vary from state to state, unless you are from the same household.
Q. I’m worried about wearing a face mask all day because I have absence seizures. Is it likely to trigger my seizures?
If your seizures are well controlled, you need to stay safe the same ways as for those who do not have epilepsy.
A new report published by an international group of epilepsy experts, including Professor Helen Cross*, has examined safety issues around wearing masks for people with epilepsy. The report finds that, “while there is no concrete evidence, wearing a mask may simulate hyperventilation for some people, which in turn may provoke a seizure. However, in the absence of any treatment or vaccine for Covid-19, prevention remains the best strategy and masks are most likely to be effective in helping to prevent the spread of the disease.”
Suggested advice is:
- Whether you need to, or want to wear a mask, try not to wear it for long periods. Have short mask-free breaks in a safe location.
- It is sensible to wear a mask in crowded locations such as public transport and shops where physical distancing is difficult.
- Do not wear a mask while undertaking extensive physical exercise, as long as there is no close contact with others.
- It is considered reasonable to remove a mask from someone having a seizure or recovering from a seizure to help assist breathing.
- Always use other essential safety measures, such as good hand hygiene and physical distancing.
- If you have concerns about wearing a mask, speak to your doctor.
For the full report Click Here
Q. Who is exempt from not wearing a mask?
Face covering is NOT required in the following circumstances:
- Infants and children under the age of 12 years
- A person who is affected by a relevant medical condition – including problems with their breathing, a serious skin condition on the face, a disability or a mental health condition
- This includes persons who are communicating with a person who is hearing impaired, where the ability to see the mouth is essential for communication
- Persons for whom wearing a face covering would create a risk to that person’s health and safety, related to their work, as determined through WH&S guidelines
- Persons whose professions need clear enunciation or visibility of their mouth. This includes teaching or live broadcasting
- Professional sportspeople when training or competing
- When the individual is exercising or engaging in physical activity where they are out of breath or puffing; examples include jogging or running but not walking. You must have a face covering on you, and wear it when you finish exercising
- When directed by police to remove the face covering to check identity
- The person is travelling in a vehicle by themselves or with other members of their household
- When consuming food, drink, medication or when smoking/vaping
- When undergoing dental treatment or other medical care to the extent that the procedure requires that no face covering may be worn
- When entering or inside a financial institution, like a bank
- During emergencies.
Q: How can I talk to my child about COVID-19?
Q: I have an adult child with an intellectual disability. Where can I find easy to read information for him to follow?
A: Good question. It is important everyone understands what to do and what is happening. Your son should find this information much easier to follow:
Q: Alcohol is a trigger for my seizures. Can my body absorb alcohol through hand sanitiser?
A: There will be a very small amount of alcohol absorbed through the skin from hand sanitiser. Hand sanitiser gel is only about 50 per cent more concentrated than the average alcohol spirits and you only use one or two millilitres at most to wash your hands. Also, nearly all the alcohol in the sanitiser will evaporate before it is absorbed.
It is unlikely there would be detectable amounts in your bloodstream and therefore it is highly unlikely to have any effect on your seizures.
Medical advice relating to the coronavirus is the same for anyone with epilepsy as for the general public. People with epilepsy are no more likely to get the coronavirus than anyone else. Still, we do recognise that respiratory and fever symptoms could trigger seizures in some people with epilepsy, and have a bigger impact on people with coexisting or complex medical conditions.
As reports on the coronavirus, or COVID-19, constantly roll in and phrases like “possible pandemic” and “state of emergency” are thrown around, it’s hard not to feel anxious.
One of the best things to do to reduce anxiety in times of uncertainty is to look for ways to increase certainty. For starters, follow the usual health advice to prevent the virus from spreading—wash your hands frequently, avoiding touching your face, and self-quarantine if you feel sick.
Make sure you have a constant supply of your medication:
- Take your prescription to your pharmacy in plenty of time – a week or two before you need your medication. This will allow your pharmacist to call other pharmacies or suppliers if there are any delays in getting your medication.
- Ordering your prescription in good time will also enable you to visit another pharmacy if your own pharmacy becomes temporarily closed due to the coronavirus.
- Do not try to stockpile your medication in case you have to self-isolate. This could cause shortages of medications for others. It is best to carry on as normal.
Stay healthy and manage stress
- Make sure you’ve got a good sleep routine, eating healthy, doing some exercise, and managing your emotions.
- Well rested people are better at fighting off sickness. Stress can weaken your immune system.
- Meditation can help reduce stress. Mindfulness and meditation apps, such as Headspace, Smiling Mind, Calm and Unplug Meditation offer some great programs
- Keep your home well ventilated by keeping the window open.
- Limit your time watching, reading or listening to the news. Hearing about the pandemic over and over can increase your anxiety. Tune in once a day just to touch base.
Most cases of the coronavirus are going to be mild, especially if you are vaccinated, and people are going to recover without the need for hospitalisation. We have weathered pandemics before, where there was a lot of uncertainty in the early days.
National Epilepsy Line
If you would like to talk to someone about your epilepsy or that of a loved one or someone you care for, please call our National Epilepsy Line on 1300 37 45 37 or email [email protected] and someone will answer from 9-5pm seven days a week.
Further information and trusted advice can be sourced on the Australian Government’s Department of Health website.
If you are unwell with cold or flu’ symptoms, you need to get tested. See how to seek medical attention.
If you are unwell with a different medical problem, contact a doctor for advice and treatment.
Keep your usual medical or pathology test appointments. Contact your doctor or specialist to talk about any concerns you have. You may be able to arrange a telehealth appointment with them if you are worried.
Visit the Healthdirect Coronavirus (COVID-19) hub for reliable information about COVID-19.
For the latest advice, information and resources, go to www.health.gov.au or call the National Coronavirus Helpline on 1800 020 080. It operates 24 hours a day, seven days a week. If you require translating or interpreting services, call 131 450.
If you have any other questions regarding COVID-19, you may wish to refer to the FAQ page of the Australian Government’s website here
Click here for the phone number of your state or territory public health agency.
Check your symptoms for coronavirus
Coronavirus Xplained Community. The MEDICINE X team are a group of doctors, artists, and creative writers who all work together to make sure of one thing — that medical information is easy to understand.
If you need support call one of the following numbers
Lifeline Australia – 13 11 14
Beyond Blue – 1300 22 4636 https://www.beyondblue.org.au/
Headspace – 1800 650 890 for young people 12-25 years
Kids Helpline – 1800 55 1800
Head to health – digital mental health resources https://headtohealth.gov.au/
If you are feeling depressed or your anxiety is high you can speak to a psychologist through e-consults with organisations such as Call to Mind https://calltomind.com.au/