Life with Epilepsy

In his paper “Effects of Chronic Temporal Lobe Epilepsy on Memory Function,” Dr. Christoph Helmstaedter Ph.D. writes:

Declarative memory processing, that is the acquisition of and the later access to newly acquired information, is one of the most essential human cognitive functions. Declarative memory establishes continuity in a steadily changing world and thus provides the basic of the individuals biography, its identity, and its cognitive behavioral development. In temporal lobe epilepsy, this type of memory is characteristically impaired when mesiotemporal and associated neocortical structures are affected by lesions, ongoing epileptic activity, or undesired treatment effects [e.g. operative treatment].

Memory is a basic function we all take advantage of; however, for the epileptic plagued with temporal lobe epilepsy, memory is an unreliable factor in an already unstable world.

Temporal lobe epilepsy (TLE) is a seizure disorder with a unique symptomatology. Unlike the classic grand mal seizures – which can and do occur with this form of epilepsy, TLE seizures are likely to be simple partial and complex partial. A TLE sufferer can experience visual, sensory, auditory or olfactory auras prior to (or in lieu of) a complex seizure.

During a complex partial seizure, a person may stare off into space, make incoherent noises, smack their lips or make repetitive movements with their hands, feet or eye, yet is not aware of what is going on around them. During a simple partial seizure, a person may make flapping gestures, repetitive movements, face twitches or experience, sensory, olfactory, visual or auditory hallucinations but remain aware of his environment. He can interact with those around him. Those with TLE can even experience extreme moments of deja vu and jema vu. TLE can lead to tonic clonic — or grand mal – seizures.

With time, TLE patients with hippocampal sclerosis (damage to the hippocampus) can experience a steady decline in their cognitive ability. This can take various forms.  Short term wise, I find myself forgetting I took my medicine three minutes after I have taken it. Or forgetting when the last time I ate (not good when I’m on a medication that reduces my appetite).

Unfortunately, to reduce my olfactory auras and absence seizures, I’m on various medications — which is the norm. The first really slams my grammar and spelling scores. This is a common side effect, and there is nothing that can be done about it.

Years ago, I was working at a newspaper and was put on this medication. I had absolutely no warning what this medication would do. There I was, a 4.0 writing student out in the journalism world. It started out great and turned south as soon as my dose hit a therapeutic level. Editors returned copies riddled with marks. What had suddenly changed? After a few months I was healthy and jobless. I left that newspaper with a sour taste for journalism, which unfortunately still follows me. And despite later working for a different, larger paper, (which treated its employees great!), I still don’t care to work at another paper.

When you have seizures, every day can be a struggle. Exhaustion and stress increase your auras, and eventually, your seizures.  You can lose your ability to drive. Family and friends, even ex-co-workers begin treating you differently. I, personally, rely on everybody to escort me around, unless I want to be housebound. And this makes me feel isolated. And it is all exhausting.

That, people, is life with epilepsy.

I know this blog is Endometriosis: The Silent Life Sentence, but any invisible illness is a silent life sentence. Isn’t it?

*FYI: I revisited this post after 2 days and found numerous errors. They are now fixed (or so I believe). Just proves my point. Even with 4 pass overs, I can’t see all of them without setting it aside and coming back.

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7 responses to “Life with Epilepsy

  1. Endochick,

    Thank you for posting this! While we’ve talked about your epilepsy in the past, I understand it much better today than ever before. :)

    Jeanne

    • Jeanne, Thanks for saying that. Being diagnosed with Epilepsy was difficulty — more so than being diagnosed with endometriosis. The stigma following this disease sometimes makes navigating the world a bit tricky. Long before my official diagnosis I was having seizures — even as a child! — and the cognitive effects (coupled with anti-epilleptic medications) began. It is almost like a very slow dementia; you know it’s coming, you are slowly forgetting stuff and there is nothing you can do about it. But at the same time, intellectually you are still with it. I’m glad you have a better understanding now. I hope this post helps others better understand TLE, too.

  2. While I am glad I stumbled upon this post, I can’t say I’m thrilled we’re both having to live through such health conditions…but it’s good to feel less alone–so thank you much for sharing your stories.

    I was diagnosed with epilepsy (JME) at age 19, and am now 38. I can say that living with epilepsy, and the driving limitations, does get easier, although I know all too well that my saying that doesn’t help you feel any less jailed. I’ve lost my license more than once, but over time I’ve realized that I am lucky enough to have either a series of myoclonic jerks and/or absences and/or auras before I have a tonic-clonic and this has allowed me some sense of safety (i.e. pull over asap, call my husband, and take a lorazapam (my ‘emergency’ med to help keep the small seizures from progressing)). Moving to more centrally located areas with lots of bike paths and public transportation has also been extremely helpful, although I realize moving isn’t something many can just up and do (grad school in Germany was especially easy). Biking has had the welcome side effect of getting me in a little better shape at least, and lamotrogine keeps my seizures down to a more or less acceptable level (if you count 1-2 tonic-clonics and 6-15 myoclonics/absences per year acceptable!). Having bad days where I can’t focus to save my life, days where I am completely exhausted and fuzzy and dizzy and all around messed up I have just had to accept. Those days don’t get any easier, but being stoked when having a good day keeps me going. In all honesty, my migraines take away a lot more of my life than my epilepsy (or my endometriosis). I have not learned how to live with their increasing frequency and severity with any semblance of grace.

    But anyway, that’s how I ended up here–in my quest to find a link between my endometriosis, the absolutely insane and worsening migraines, my epilepsy, and infertility. And here we are. Reading all the research papers out there that tie this symptom to that precurser to this hormone to that genetic expression at some point just makes my head spin, even if I am a trained scientist…but I press forward…the hubs and I are seriously considering IVF next month, but with all that I have going on, I really wonder if it isn’t even more of a huge gamble than I already know it is. The joys of being at the end of the line (age-wise) with too many chronic conditions….

    Stay strong and again, thank you for putting yourself out there. It is appreciated.

  3. Thanks, and I’m glad you happened upon my blog and can get something from it. I got my licence back yesterday — three days shy of my birthday. What a wonderful present. I told my neurologist it was the only thing I was asking for this year!

    Epilepsy is one of those silent disorders and you look perfectly fine on the outside — unless you’re seizing. I have absence seizures, and I may look like I’m ignoring people. That’s tough. The cognition and memory issues… that is rough. I used to always be on my game, and now it’s so hard. Trying to find a new normal. And now with a med increase… fun!

    Thanks for reading!

  4. I have the same and its hard. Its hard to live with memory problems. Its hard to live with seizures and mine arent under control yet. Cant drive, hate relying…viewed different too even applies in some cases. Looking frwd to some relief some day and i hope you get yours <3
    from a TLE sister

    • Thanks and I hope you get relief too. It is difficult living with TLE and the medicine only adds to the memory and cognition nightmare. I’m becoming the queen of sticky notes and would be lost without my pill reminder. And someone reminding me to fill it on Sunday!

  5. Thank you for posting this! I have stage IV endo and I am actually going to have an MRI on my brain done this afternoon. I have had (what I thought) were migraines for years. They are all centered around my left eye, cause vision loss, dizziness, and twitching. Just recently I have started to notice a huge problem with memory loss. I forget things in about 2 seconds. (it has taken me quite a while to write this comment) I am a marketing manager and it is really starting to seep into my daily life and cause pretty significant problems. How did they finally diagnose your seizures?

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