Our Helpline and Information Officer, Uschi Stickroth provides information on when you can consider to come off your anti-epileptic drugs (AEDs) and things to consider when coming off your AEDs.
This is a common question on our helpline. We understand that the thought of having to take medication for a long time, possibly for the rest of your life, isn’t easy for some people.
Others feel reassured knowing that the medication they take controls their seizures, or at least reduces the severity and frequency of seizures keeping them as safe as possible.
Not every person is suitable for coming off their anti-epileptic drugs (AEDs). There are many factors that will determine your chances of staying seizure free. It depends on:
- the type of epilepsy and seizures you have
- how old you were when you had your first seizure
- how long you have been seizure free
- whether you are taking more than one AED
- whether you continued to have seizures after starting on AEDs
When can I consider coming off my medication?
Usually, if you have been seizure free for two to three years you could talk to your specialist about the possibility of coming off your anti-epileptic drugs.
This should be done slowly and over a period of time during which you will be monitored carefully by a specialist.
Generally, the longer you have been seizure free, the less likely it is that you have another seizure when coming off your AED(s).
There is, however, always a risk that your seizures may return. All of this will be discussed with you so you can make an informed decision based on the likelihood of seizure returning.
Reasons for wanting to come off AED(s)
Some people are concerned about long term side effects of AED(s) or simply don’t like the idea of taking drugs for the rest of their lives.
Generally, AED(s) are very safe when taken over many years, but some people may experience long term effects.
Each person reacts differently to AEDs. One person may tolerate a specific drug incredibly well with as good as no side effects, whereas another person on the same drug may experience more severe side effects.
Some longer term side effects can include a decrease in bone density increasing the risk of fractures, or weight gain.
Whatever your reason for wanting to come off your AEDs, you should, in the first instance, discuss this with your specialist or epilepsy specialist nurse to find out if you are potentially suitable for coming off your medication.
Never ever stop your medication on your own. This could result in a serious breakthrough seizure putting yourself at risk.
Coming off your medication
This is a slow process, usually over a few months. If you take more than one drug, it is recommended you come off your drugs one at a time, so the process will take even longer.
Be trigger aware
Pay particular attention to possible seizure triggers such as lack of sleep, stress or anxiety during the transition phase and afterwards to maximise your chances of remaining seizure free.
Choosing the right time
Choosing the right time is crucial to make this a success. Right now, many people struggle with stress, anxiety and depression due to the ongoing COVID-19 and lockdown situation.
Think carefully about whether this is the right time for you especially if stress and anxiety is a seizure trigger for you.
Is your work situation stressful? Are you experiencing financial difficulties, or difficulties in your home life or relationship? Are you grieving the loss of a loved one?
Remember, it is your decision, but make sure your decision is informed and based on specialist medical advice.
Once you have the all clear from your specialist, also talk it over with people you trust. Having seizures return may impact your family’s life as well as your work and social life.
You will have to give up your driving license for at least one year if your seizures come back.
There is more information in our factsheet, or feel free to contact our friendly Helpline and Information officers by calling 0808 800 2200 or emailing contact@epilepsyscotland.org.uk.
