Hidden hazards of epilepsy

1: Burns, scalds and bruises: Regardless of how controlled your seizures are, it is inevitable at one point you are going to end up with a burn, scald or bruise because of a seizure. Myoclonic jerks and twitches are the worst for this I have found. One minute you’re getting your perfect Yorkshire puddings out of the oven, the next minute you have twitched, your hand is now sporting a massive burn and the dogs are chowing down on the Yorkshire puddings that have inevitably ended on the floor! I would always suggest having a fully stocked first aid kit in your house.

2: You are NEVER going to remember people’s names and/or faces. EVER. I have yet to meet a person with epilepsy that has a good memory, particularly recall of names and faces. There will be many times when someone you clearly know is talking to you and you cannot for the life of you remember their name! The teenager has a friend called Aaron, I have been calling him Arnold for four years now because for some reason I can never remember the name Aaron, no matter how hard I try, it just escapes me every time I talk to him. My top advice is to just smile, nod and avoid referring to people by their name unless you absolutely must.

3: Coughs and sneezes. You have heard the saying coughs and sneezes spread diseases, well they can also spread seizures! While a cold is common and not a big deal, it can increase your risk of having a seizure and ending any seizure free streak you may have. I remember my first ever epilepsy nurse telling me that when you are unwell, even if it is just a cold, you can develop a temperature, your immune system is working harder and for some reason it can make your AED medication less effective. If you are feeling even remotely under the weather I would suggest grabbing a duvet, a packet of cold and flu tablets, a cold drink and settling yourself down on the sofa with your favourite box set until you are feeling better. I would always also suggest always having some sort of cold and flu remedy and something to help control a temperature in your house , even when you are feeling fit as a fiddle. In my experience, it always pays to plan ahead , after all it wasn’t raining when Noah built the ark was it.

4: Strong smells. No, I am not referring to the husband’s bad wind or the stench that comes from most public toilets, I am referring to every day items and substances that can trigger a seizure. A large percentage of those with epilepsy will find that a specific smell can trigger a seizure. The source of the smell is different for everyone, but some common ones are things like fence paint, gloss paint, paint stripper, freshly cut grass, lavender and strong glue. If you discover a specific smell triggers seizure for you, avoid it at all costs! I have found that the spring and summer months are the worst months for trigger smells. Everyone is out painting fences and cutting grass. My advice would be avoid B&Q and HomeBase like the plague, purchase yourself a Hazmat suit and some nose clips and enjoy your summer.

5: Over sleeping.  Epilepsy makes you tired. The chances are you are going to over sleep, be late for work, miss appointments etc a fair few times. In my experience, this is more likely to happen if you are having regular seizures, particularly if your seizures occur at night or are nocturnal.  Forget all the usual tips people offer to those who struggle to get out of bed in a morning, if you are in seizure sleep no amount of alarms are going to wake you up and neither is putting your alarm clock at the other side of the room going to work either. All that will do is infuriate anyone else who lives in your house. In all honesty, if I am in seizure sleep, armed police could raid my house and I probably still wouldn’t wake up so an extra alarm from Poundland would be about as much use as a chocolate teapot. The best thing to do is to not worry about it. Go with the flow. Try to make appointments for later in the day if you know you have difficulty getting up in a morning. In terms of work, talk to your employer, help them understand the situation.

Regardless of the hazards and challenges epilepsy poses, face them head on, smile, be yourself and live your best life. That is the best advice of all ..... and take naps ... lots of naps .