Epilepsy & Memory: a daily struggle
For many people with epilepsy, it’s completely normal to have a pretty horrendous memory. Epilepsy creates memory problems that are just plain unnecessary and can be more than your standard forgetfulness. Words escape you and play hide and seek, not letting you articulate them until they’re ready to be found. Some days you ask questions over and over again when you already have the answer. When you have epilepsy some days you and your memory make the perfect team. Then other days it works against you. An unreliable memory is something you just have to live with if you have epilepsy. When your body has already betrayed you with seizures, an untrustworthy memory can be really hard to adjust to.
Our brains are damaged by every single seizure. To add fuel to the fire, the long list of side effects of anti-epileptic drugs usually include memory loss. Combine them together and what hope have we got for a reasonable memory at the very least?
The impact on memory can vary from person to person, just as epilepsy does. As per usual I can’t speak for others, but my memory is awful.
A quick low-down on memory
With noticing my (bad) memory more often, I’ve read up on it multiple times. I’ve always found it interesting and helpful to know what’s going on in there. If my memory isn’t working good enough for me, I might as well have an idea of what’s going wrong.
Our memory helps us out by storing and recalling information as and when it’s needed. Each and every time new memories are made, there are chemical and electrical changes in the brain.
When using or making a memory the 3 stages involved are:
New memories are either stored in your long- or short-term memory. If any of the stages are interrupted, your memory can be affected. Based on this it’s no surprise that epilepsy can have a bad impact on your memory. Sometimes your memory is even effected by smaller seizures that don’t progress into larger seizures. These are often called “auras“.
Memory and seizure management
Seizure management is the reason people with epilepsy take numerous anti-epileptic drugs. I’d rather not be taking medication, but the alternative is a potential rise in seizures, which is why I need to remember to take my tablets.
I take my tablets twice a day, at 7am and 7pm. Missing doses and timings can put me at a higher risk of having a seizure. If you’ve read my account on what it feels like to have a tonic-clonic seizure, you’ll know how awful seizures can be. But when epilepsy creates memory problems, it’s very easy to forget to take your medication. I can’t count the number of times I’ve forgotten to take it, or taken it too late over the years. Now I can’t rely on my mind to remember to take the anti-epileptic drugs that I’ve been taking for 8 years. Instead, I rely on my phone because at least it’s consistent. I never thought I would be relying on my phone to help manage my epilepsy.
The day-to-day dilemmas
I’m always losing my words and forgetting what I’m talking about – a lot more than the average person. Quite often I’ll forget a really easy word that I’ve known for years. Instead I have to go the long way round and describe the word I need. Usually resulting in then forgetting what the conversation was about in the first place.
Every single day I’ll lose something and cannot for the life of me remember where I left it. Not long ago I bought some new makeup, only to lose it for a month straight about 2 days after I got it. After a solid week of searching, I gave up. I just had to cross my fingers and hope it would turn up – luckily it did, but it was in the most random place for some reason! This is just one example of all the things that go “missing” because I can’t remember where I had them last.
Losing items and words can be annoying, but not nearly as frustrating as losing fond memories. This always includes times with family and friends that you would otherwise usually cherish. For a while, I was so angry at my mind and its inability to store the moments I held closest to my heart. I was often unsure if a memory was really there, or if my mind was simply filling in the gaps. Luckily not all the important moments in my life are forgotten and now I’ve made peace with the fact that sometimes my mind fills in the blanks with the information I get from a conversation. Whether the memory is being recalled, or (re-)created with snippets of information, either way, the memory is there and I’m happy with that!
The memory test
When I discussed my epilepsy and memory dynamic with my neurologist, I was offered tests with a neuropsychologist. I spent around 4 hours in the hospital completing various tasks that involved recalling information. The tasks were simple at first and gradually grew in difficulty as the session progressed. But of course with the session only being 4 hours, it hardly tested my long-term memory.
A couple of weeks later I spoke to my neurologist again, only to be told that I performed brilliantly on the test. This wasn’t bad news, but it was frustrating because I know that my memory is unreliable. The most annoying thing is that because of the glowing results, the help I was offered was advice to write things down and use sticky notes. I don’t know what support for my memory I was hoping for, but I was expecting something more substantial.
A bad memory is not apathy or laziness
If there’s one thing I’d like you to take away from this post, is to simply be patient and kind to those forgetful people with epilepsy. Yes, sometimes we might just be a normal level of forgetfulness like the average person. But most of the time we can’t help it when we ask the same questions, can’t remember words, forget what was being said or can’t remember an important life event. I’ve learnt to laugh at how bad my memory is, because sometimes it’s so bad that it’s comical. So laugh along with me because why not?! Laughter is always better than annoyance!