The Ultimate Guide to Epilepsy Support Services: What You Need to Know

Epileptic seizures can shut down a person’s life. If they’re severe, the person living with the condition can lose their will to live. This is why there are high-intensity epilepsy support services. And in Australia, this is serious business.

That’s right – care workers are put through military-like training to be able to provide you or your loved one with the kind of care that befits the condition, and ascertains the dignity of the person being taken care of. Take note of the last part of the last sentence.

As we’ve already pointed out, high-intensity epilepsy and seizure support is serious business. This guide exists to walk you through it. In the following sections, we’ll cut through the technicalities surrounding it and bring you unfiltered information on epilepsy support services, seizure support services, and epilepsy care and support, so you know exactly where to turn.

This guide can save your life.

Epilepsy: The facts

With the way this condition is stigmatised, you’d think it was rare. It is, in fact, a common condition in the human population, contrary to every belief you may hold or have heard expressed.

The World Health Organisation (WHO) estimates that around 50 million of the Earth’s 8 billion population have it. 250,000 of that number are Aussies. It is important to note that this number refers to the active epilepsy cases. Yep – epilepsy is not a lifelong condition.

Here’s how it breaks down:

1. Some People "Grow Out" of Epilepsy

There are kinds of epilepsy that manifest mostly in children. These ones often resolve with age, which means any child suffering from them can outgrow them by their teenage years.

2. Some People Become Seizure-Free with Treatment

For those kids who don’t grow out of their epilepsy in their teens and those adults who get it later in life, there’s still hope. Data proves that at least a good 70% of people with epilepsy can live without seizures if they take treatment seriously.

That’s right–as long as the type of epilepsy has been properly established through diagnosis and the treatment regimen is followed religiously, there is a big chance of living the rest of your life without a seizure. This doesn’t mean the epilepsy is gone; it just means that you won’t be dropping to the ground at the slightest trigger as you used to for the rest of your life.

It is important to note that people in this category need their doctor’s permission to stop treatment altogether. And typically, if the patient has lived without seizures for two years or more, the doctor will slowly wean them off the medication. This means that people in this category can live seizure-free AND without meds, which is practically equal to being epilepsy-free.

3. The Cause Matters

Sometimes, epilepsy is genetic. Sometimes, it’s caused by a brain injury or disease. Sometimes, it’s caused by an unusually high fever or an infection of the nervous system. Sometimes, sudden alcohol withdrawal can cause it. When you’re getting your diagnosis done, also find out the cause. This matters a lot as you make plans on how to manage it.

And so you see that the estimated 50 million on record in the WHO’s database and the 250,000 Australians on record with epilepsy were a lot more at some point in time. In fact, more data suggests that around 3 percent of Aussies will have epilepsy in their lifetime.

This also means that a good number of the 30 percent who will neither outgrow it in their teenage years nor stop having seizures as adults will need basic epilepsy support services, some of which will be high intensity.

Practical Tips For Epilepsy Support – Actionable Advice You Can Use Today

We’re going straight into the thick of things with this one, because high-intensity epilepsy care and support is serious business.

Before we go into the tips, though, it is important to note that the tips below are tips that you can follow to manage your or your loved one’s epilepsy. High-intensity seizure support services are absolutely necessary if the condition is severe. You can’t escape it.

Now, here are the strategies to follow to self-manage your condition:

Medication & Treatment Management

1. Track Seizures

Experts recommend a seizure diary for this. You can do it with a random notebook that you have lying around at home. Write down everything, from what you were doing to where you were and what time you were there. If you do this, you’ll start to see signs and patterns, which will help you discover your triggers and help your doctor come up with the right treatment for you.

2. Make Sure to Set Reminders for Medication

Use phone alarms or even an alarm clock if you have to. There are even pillboxes that have built-in alarms to notify you when the time comes for your next dose. Don’t play with medication.

3. Review Your Meds Regularly

This is why a seizure diary helps. You could probably have a seizure despite having used meds a few minutes ago. Once you spot that certain meds are becoming ineffective, see your doctor.

Lifestyle Adjustments for Seizure Reduction

1. Sleep

Sleep the maximum number of hours possible. Don’t pass off on naps when the opportunity arises. Draw up a sleep schedule if possible to help you maximise sleep. Create a sleep routine, too.

2. De-stress

Epilepsy happens when the brain cannot handle the electricity it generates from an activity. And it is a fact that if the brain gets stressed, it’ll generate a lot of electricity. Try not to stress it too much.

3. Eat Well and Drink Enough Water

Balanced dieting and drinking enough water actually work to keep most ailments away from the body. If you or your loved one with epilepsy skips meals or takes a long time to eat the next one, you’re setting the tone for seizures to become more commonplace. As for water, drink up to 8 glasses a day, and you’ll be mostly alright.

Seizure First Aid & Safety Planning

1. Learn Seizure First Aid

Plan as you will, unless the doctor clears you or your loved one, there’s almost no escaping epileptic seizures. Learning seizure first aid will save your life. There are three main steps to seizure first aid:

• Don’t lose your calm and stay with the person having a seizure.
• Move every potentially harmful object away from the person, and don’t put anything in their mouth.
• Time the seizure. If it lasts two to three minutes, it’s a normal seizure. Anything more, call 000.

If you live with epilepsy, tell those around you of your condition, and teach them these steps. Also carry this in a Seizure Action Plan (SAP) around with you in case it happens away from family, friends, your neighbourhood, or colleagues.

2. Create a Seizure Action Plan (SAP)

Speaking of SAPs, this is what the experts say it should contain:

• Your full name and age
• Seizure type and frequency
• Your emergency contact
• Your doctor’s name
• Your list of medications and dosage for each. This one is important because you may be carrying them with you when the seizure happens, and the good Samaritans who help will need it to be able to administer them to you.
• Seizure first aid steps

Never go out without printed copies of this plan. It must be simple enough for even a child to read and understand.

Emotional Well-Being & Support Networks

1. Journal or Speak to Someone Daily

Usually, the advice would be to speak to someone and if you can’t, journal. It’s the other way round in this case because of how much epilepsy upends a person’s life, especially its severe versions. Start a journal about how you feel daily. Just write, there’s no formula to it.

If that doesn’t work, you can use mood tracking apps to see how you feel daily. When this doesn’t work, that’s when you can reach out to friends and family for a talk. If you’re caring for someone with the condition, the onus is on you to encourage them to journal, or, if they’re children, journal on their behalf.

2. Join a Peer Group

There’s power in community. Find one and join. It will do a lot for your mental health, which will, in turn, do a lot for your recovery process. If you can’t find anyone to join, reach out to Support Network and we will sort you out.

3. Seek Professional Help

It’s a no-brainer to have a counsellor or therapist on speed dial for a neurological issue. Why? Because your doctor might recommend it. Even if your doctor doesn’t, therapists and counsellors have techniques like Cognitive Behavioural Therapy (CBT) that can speed up your recovery process and help you manage the negative feelings that can trigger seizures. These approaches are data-backed, by the way.

Tech Tools & Digital Epilepsy Care and Support

1. Track Your Seizures With Apps

There are apps that exist to do just this. One of them, Epsy (among others),  even gives you an option to share your seizure data as a mailed report to your doctor. Some can even connect with your carer’s phone to alert them when there’s an onset of a seizure.

If apps are too complicated, use your phone’s notes or calendar feature.

2. Wearable Devices

From smart watches to smart wrist bands, there exist many tech products that are usually worn as accessories to monitor your body’s vitals. Find and buy the ones that can detect the onset of a seizure.

When you do, connect them with your carer’s phone or wearable tech, so that they quickly know to come to you, or arrange assistance from wherever they are.

If you or your seizures are severe, buy medical-grade wearables and/or bed sensors that can alert you or your high-intensity support worker in the other room to come to your aid.

3. Use Telehealth Services

No matter your condition, there’s a way to consult with a doctor online. If a trip to the hospital for regular checkups isn’t convenient, a video call will most certainly do the job just as well. Just make sure to book them ahead with your doctor.

High-Intensity Support & Resources for Epilepsy Care

What’s a guide without resources?

We have prepared a list of epilepsy support services available for you in the following sections. We also name the professionals you need to consult with, as well as resources that can help you manage the condition.

Professional Epilepsy Support Services

Support Network’s Tailored Programs

Support Network serves Australians in need of any kind of care from Canberra. Whether your epilepsy is severe or not, we provide both high-intensity support services to help you live your best life.

All our packages are malleable enough to fit government funding rules for care services via the National Disability Insurance Scheme (NDIS). What’s more, all our carers are practically experts in handling disabilities and other conditions like epilepsy, because they’ve been put through the fire to come out as diamonds that shine bright in the care industry.

For epilepsy care, specifically, Support Network carers receive seizure management and first-aid training. Not every carer has this background. This means that if your carer is from us, you can rest assured that your seizures will be properly handled.

Whether you’re in Canberra or Perth, we’re only a call away. What’s more? All care is personalised, which means that you will tell us what exactly you need and we will work with that template. We can even build your care plan together!

Neurology Specialists vs. Epileptologists

Only a neurologist can confirm that your seizures are indeed epileptic in nature. Your doctor may suspect it, but in the end, they’ll have to refer you to one. It is the neurologist who will also get you started on the necessary treatment, which your doctor will follow up with.

If your epilepsy is hard to control(the kind that needs high-intensity supports), your doctor will refer you to an epileptologist. An epileptologist is simply a neurologist who specialises in epilepsy. They usually work in specialist centres and can carry out surgery if necessary.

Experts have suggested that as a rule of thumb, if two different anti-seizure prescriptions don’t work, look for an epileptologist.

Allied Health Professionals

Along with your carers and doctor(s), it’s great to have allied health experts looking after you to help manage the condition.

In our opinion, the two most important are the neuropsychologist, who can make sure your brain doesn’t suffer any lasting damage after your seizures, and the occupational therapist (OT), who will work with you or your carer to make sure your home is safe enough for your seizures.

If treatment begins to affect your ability to speak or swallow, get a speech therapist on your roster. If it affects movement, you need a physiotherapist. Let’s not forget the counsellors and social workers who will make sure your mental health is as good as it can be with chats, therapies and other programmes.

Collect them all like you’re assembling the Avengers to defeat Thanos, because you kind of are.

Peer & Community Seizure Support Services

Epilepsy upends lives. It’s a tough condition to live with. And the best way to live through something as tough, is with a great support system.

Support Groups in Canberra

If you’re in Canberra, Support Network is there for you. We serve all of Australia from Canberra and have our finger on the pulse with respect to the great communities that can help you slowly reclaim your life.

Epilepsy ACT, however, remains the biggest resource for support in Canberra and its environs. Contact them via their phone (1300 37 45 37), and get access to their vast network of community groups. They can even recommend our services to you!

If you’re a very hands-on person, you can check community centres, libraries or hospital noticeboards for the information you need on local epilepsy groups and their events.

National & Online Forums

Epilepsy Action Australia (also reachable on 1300 37 45 37) is the most recognised (unofficial) national epilepsy line and online community. They’re on Facebook where they run groups for adults, youth, and special-interest groups (pregnant women, veterans, and so on).

The official epilepsy support service for Australia, though, is Epilepsy Smart. They offer the same services, so you don’t get confused about what they do. It’s just a case of having several options to choose from.

If you’re still confused after trying to find support using either of the two mentioned above, do the following:

• Ask your doctor
• Check Social Media Carefully
• Give it time, because finding a community actually does take some time.

Digital Educational Resources

Reading guides like ours is way cooler, but if you prefer podcasts or videos, Epilepsy Action Australia has live online seminars and an “Ask an Expert” video series. They also have an online academy that offers courses you can take to learn how to care for yourself or your loved one with or without a carer.

On YouTube, you can find several channels dedicated to epilepsy that you can also learn from. Just make sure you’re not consuming the wrong information by cross-checking with your doctor.

Also, here are some websites that can help you out:

• Healthdirect Australia (healthdirect.gov.au)
• Better Health Channel (betterhealth.vic.gov.au)
• Wikipedia
• Australian Department of Health’s directory on neurological conditions (health.gov.au)
• The Epilepsy Foundation’s Australian website (epilepsyfoundation.org.au)
• Epilepsy Action (epilepsy.org.au)
• Support Network

Financial & Crisis Support

1. NDIS

You can only get funding from NDIS if your epilepsy is severe. The scheme will help you finance high-intensity supports.

2. Medicare & Private Health Cover

Medicare will only cover hospital visits and not home care. Private health insurance, however, can see to home care.

3. 24/7 Helplines and Emergency Contacts

• National Epilepsy Support Service (NESS): 1300 761 487 (Mon–Sat, 9 AM–7 PM)
• Lifeline (Suicide Crisis Line): 13 11 14
• Kids Helpline: 1800 55 1800 (for youth under 25)
• Other Emergencies: 000 (triple zero)

FAQs

1. What are epilepsy support services, and who provides them?

Whatever is done to make the life of someone living with epilepsy easier an epilepsy support service. Support Network can help you assemble the best team to support you in this journey, from medical care to daily living help.

2. How do I find seizure support services near me?

• Ask your doctor
• Epilepsy Action Australia via their phone number 1300 37 45 37 (or Epilepsy ACT if you’re in Canberra)
• The “Service Finder” option on Healthdirect.gov.au
• Local hospitals or community health centres
• NDIS planner or local area coordinator
• Online communities
• Support Network

With these resources, you’re assured of finding the best care.

3. Will Medicare or the NDIS cover my epilepsy care and support?

Medicare only covers essential medical visits and tests, not home support. For home support, look to the NDIS (even though this is not a given).

4. Can children and teens access the same epilepsy support services?

Pediatric specialists in epilepsy and neurological conditions exist to cater to children and teenagers. Allied (child) health professionals and child psychologists are also there to help them. And of course, Support Network, with their care providers who offer personalised care services, are well equipped to take care of children with epilepsy.

5. How do I turn up for my first epilepsy support appointment?

Go along with the following:

• A list of all the medications you’re using at the time of your first appointment (names and doses)
• A list of any emergency meds
• Copies of recent EEG or MRI reports 
• Your seizure diary
• Questions
• A family member or friend

Most importantly, go with hope. The professionals want to help you.

Conclusion

Bookmark this guide so that you can refer to it anytime for the right high-intensity epilepsy support services and care that can empower you to live independently and with greater peace of mind.

And if you feel overwhelmed or confused, reach out. Support Network is here for you, and will always be. We’re your biggest cheerleaders, after all