Q: I have recently been diagnosed and still trying to work out my seizure triggers. What sort of triggers do most people have?
A: Most people with epilepsy identify a precipitant that triggers or exacerbates seizures. Triggers can also be dependent on the specific type of epilepsy you have, so someone with focal epilepsy may rank their most common triggers in a slightly different order to someone with generalised epilepsy. Triggers can also be internal or external.
Examples of internal precipitants include:
- emotional stress, fatigue, infections or fever, menstrual cycle, and sleep.
Examples of external precipitants include:
- alcohol use, caffeine use, fasting, flashing lights, heat or humidity, and sleep deprivation.
A study of 247 people with epilepsy showed that 62% noted at least one specific seizure trigger. In descending order, stress, sleep deprivation, sleep, fever or illness, or fatigue was noted by at least 10% of patients. Heat and humidity (9%), flashing lights (4%), caffeine (2%), and fasting (2%) were infrequently noted triggers. Only two people noted an effect from alcohol. Fifteen (4%) noted other precipitants, including physical discomfort or pain, physical exertion, awakening, changes in lighting but not flashing lights, specific odours, laughing, loud noises, and unspecified dietary triggers. (38%) noted they had no specific precipitants.
Stress, sleep deprivation and fatigue are often reported as triggers, and this is most likely because they are linked and you really don’t suffer from one without the other. It suggests that they act through common mechanisms to worsen seizure control.
For more information: http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2000.01534.x/pdf
Q: I seem to have a lot of trouble sleeping. Could it be that I am having another type of seizure?
A: Good-quality sleep is an important and frequently overlooked component of general health, but it is particularly essential to people with epilepsy. Lack of sleep affects every part of your day – you are constantly tired, can’t concentrate or focus and have trouble remembering things. Your difficulties sleeping may or may not be seizures or epilepsy related. Sleep can be affected by seizures, coexisting sleep disorders and seizure treatment. Also, worsening sleep can also potentially worsen seizures and epilepsy.
Any seizure that happens in sleep, or even just before sleep can disrupt your entire night’s sleep pattern, resulting in daytime sleepiness the next day. Some people are not aware that they are having the seizures and blame the sleepiness on other things like medications or other medical conditions.
There are some antiepileptic drugs (AEDs) that affect sleep. The effects of AEDs on sleep are a concern with some having detrimental effects on sleep, particularly benzodiazepines and barbiturates and also phenytoin. Others, especially gabapentin, seem to actually improve sleep quality. Much research in this area is confounded by the effects of seizures and concurrent conditions on sleep, making it difficult to isolate the direct effects of AEDs on sleep.
I think the fact that you are consistently having sleep difficulties every night, and you are aware of it, may mean you possibly have a sleep
disorder of some type. Some sleep disorders are very subtle and not noticeable until you are tested.
There is also the possibility that your medication(s) may be causing sleep problems. Some medications are known to cause sleep difficulties. It might be worth checking about yours. Medicines line are a group where you can speak to a pharmacist https://www.nps.org.au/medicines-line 1300 633 424 about your medication side effects.
This is an issue you really need to address because as you probably know, lack of sleep can trigger seizures. I would discuss what to do with your doctor and perhaps ask for an overnight sleep test to try and detect any sleep disorders. Epilepsy and sleep disorders are frequently seen together.
Here is a bit about how to help get a good nights sleep https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/sleep-hygiene
Q: I want to tell my son about epilepsy in the best possible way. He was diagnosed just over a year ago but I thought he was too young to understand, but now he is asking questions.
A: Epilepsy can be a difficult condition to explain. This a great animated video for young children to explain epilepsy. https://www.youtube.com/watch?v=L_9mgQdfQqA
This is a booklet for primary school aged children. For a more simple read or explanation, read the red text to your child. http://www.epilepsyscotland.org.uk/pdf/So_What_is…..pdf
This is a list of books available. Our organisation often reads Mummy I feel funny, and Taking Epilepsy to School to other children https://globalgenes.org/raredaily/talking-to-children-about-having-epilepsy-books-for-kids-with-epilepsy/
I hope this is a good start. Because epilepsy differs from person to person, it’s hard to find materials that are the right fit for each child.