Q: I was diagnosed with epilepsy many years ago and I have a lot of side effects, particularly memory loss. Are there any online groups I can join to talk to?
A: There are many online support groups, too many to list here. We often recommend Forum4e or MyEpilepsyTeam and if you join one or both sometimes you can source a smaller group through them if that is what you prefer. These are the details of online support groups in this Factsheet
Memory difficulties are one of the biggest complaints for people with epilepsy. I’ve added this link with some videos from Neuropsychologist Dr Laurie Miller discussing different aspects of memory and this is a link to our web page specifically about memory.
Q: I have been seizure free for over 10 years and no longer taking medication for over 5 years. I recently went to reapply for my license and saw a new doctor. He has said I cannot get my license without recommencing medication. Is this right? I do not want to take medication if I am not having seizures.
A: I’m sorry to hear you have been told this. Certainly, there are different situations for individuals, but from what you described, it sounds like you are well within your rights to expect to return to driving.
The new classification and definition of epilepsy includes this:
“Epilepsy is considered to be resolved for individuals who had an age-dependent epilepsy syndrome but are now past the applicable age or those who have remained seizure-free for the last 10 years, with no seizure medicines for the last 5 years.” So your epilepsy would now be considered “resolved” according to this (ILAE) definition (https://www.ilae.org/guidelines/definition-and-classification/the-2014-definition-of-epilepsy-a-perspective-for-patients-and-caregivers)
Page 83 onwards of this Assessing Fitness to Drive document explains many circumstances related to seizures and epilepsy where people can or cannot drive and how long they should expect to lose their license for.
I think is it unreasonable to expect you to recommence medication for this reason. My first advice is to see a different neurologist (maybe one that is an epilepsy specialist) or even contact your original neurologist if you can. Ideally, it’s best to see someone who knows your medical history.
This is the position of the Epilepsy Society of Australia (run by neurologists).
Q: I’m 29 years old and have had epilepsy for 8 years. The doctor said it was “frontal epilepsy”. Most of my seizures are during sleep and very mild. Occasionally I get really bad seizures where my whole body jerks and it takes a couple of hours to recover. I take carbamazephine 400mg a day. Is this the right medicine? Why aren’t my seizures stopping? Am I at risk for sudden death?
If you have frontal lobe epilepsy, then carbamazepine is one of the drugs that is often used to manage it. There are many epilepsy drugs, but carbamazepine has been used for a long time and has worked quite well for many people with focal epilepsies.
There are many different brands and formulations of carbamazepine, some last longer in the body than others, and the doses people take varies greatly also. The average dose for carbamazepine is up to 800-1200 mg/day. This obviously depends on side effects the medication causes you and effective seizure control. So, if your seizures are controlled with a lower dose, then there is no need to raise it. However, your seizures are not controlled, so it is worth discussing with your doctor about increasing your dose. This is an article explaining carbamazepine dosing.
Here is more about carbamazepine. Your pharmacist should also be able to help with information.
You are right to be concerned about seizures during your sleep. There are more risks associated with the (tonic clonic) seizures you describe in your sleep than any other seizure type, so the best way to lessen your risk is to reduce your seizures. This information talks about reducing your risk.
It would be worth seeing your treating doctor to ask about your medication and dosages.
Q: My seizures are very reactive to stress, so when I am under pressure, I have more seizures. I also have depression and taking medication for it. What can I do myself to help manage my stress and depression? I cannot drive so would prefer telephone or online support.
A: There are many, many online services, information and apps that can help you. I will suggest a few here but have a look and see what you think so you can find something to best suit your needs.
Call to Mind is a telepsychiatry service that allows people across Australia to access quality mental health care. There is a team of psychiatrists and psychologists who consult via video-conferencing platform, so you can attend your appointment from anywhere. You need a referral from your GP and can access your consult from a computer, smart phone or tablet at home or maybe even at your GP’s practice. https://calltomind.com.au/
The MindSpot Clinic 1800 614 434 MindSpot is a free service for Australian adults who are experiencing difficulties with anxiety, stress, depression and low mood. They provide assessment and treatment courses, or can help you find local services that can help. https://mindspot.org.au/
Counselling at Your Place is an Australian Skype and telephone counselling service open from 10am to 10pm, 7 days a week 365 days a year. They can confidentially debrief and provide therapeutic counselling support without the need to leave the safety and comfort of your own home. They can help with many issues which includes stress, depression and anxiety. http://www.counsellingatyourplace.com.au/
Beyond Blue 1300 22 4636 has a wealth of information and online support for depression, anxiety and stress https://www.beyondblue.org.au/
SANE Helpline 1800 187 263 https://www.sane.org/ Allows you to talk or chat online to a mental health professional (weekdays 10am-10pm AEST). They also have a lot of information and online support and forums.
THIS WAY UP™ provides online learning programs and CBT, education and research in anxiety, depressive disorders and physical health. https://thiswayup.org.au/
MoodGym is an online self-help tool to help prevent and manage symptoms of depression and anxiety. https://moodgym.com.au/
Moodjuice Self Help Guide is a free online book about stress and self help https://www.moodjuice.scot.nhs.uk/Stress.asp
Stress: There are endless apps to help manage stress. Some well-known ones include:
Headspace is a comprehensive meditation app, with guided and unguided meditations to help you through all phases of your life. It offers ten free sessions, with hundreds of hours of extra content if you love it and want to subscribe. https://www.headspace.com/
Stop Breathe Think aims to give you the chance, and skills, to stop everything, just breathe, and think. The guided meditations cover a range of goals and are constructed to help you take some time out and concentrate on yourself. https://www.stopbreathethink.com/
Calm is designed to help you be calm. With stunning backgrounds that you can stare at for ages, and a range of meditations, Calm provides a space for you to get away from it all, without having to go anywhere. https://www.calm.com/
Smiling Mind Is a free app meditation program developed by psychologists and educators to help bring mindfulness into your life. https://www.smilingmind.com.au/