What simple partial seizures are like

It started in 2012 and it took me over a year to figure out what the hell was going on, and to be able to give it a name: epilepsy.

Until then I'd had vague, but disconcerting symptoms for over a year, and they had kept appearing over and over and over again, to a point where I had started doubting myself. Was I somehow making it up in my head? Was I, maybe, a hypochondriac?

I tried "talking myself out of it", had tried pretending like it didn't exist, had tried googling - oh jesus how much googling I had done, trying to figure out what the hell was going on - but in the end it wasn't until I had a full-on seizure (whilst 4 months pregnant) that the relative clarity of a diagnosis appeared, and with it, a certain amount of calm.

Because yeah, it sucked - having epilepsy - but at least I wasn't referred from doctor to doctor any more; mostly men who all shook their heads and said that they, honestly, cannot see anything wrong with me whilst I knew that approximately once a month I was having a day or two when in waves, something would happen to my body, and I wouldn't understand what.

I would get tingly in my face and my upper body.
I would feel like I was about to pass out, but wouldn't.
I would struggle for words, unable to form thoughts in my head.

Now I know that what I have are simple partial seizures - a mild form of epilepsy. Adult-onset, somewhat unusual, but... heck, I'd rather have that than lifelong epilepsy. At least I've never had trouble getting a driver's license, or convincing a guiding company to let me go up a glacier, or had to doubt my physical abilities otherwise.

Unlike now, when I am not even allowed to donate blood, and have to prove to a neurologist that I am safe enough to drive a car.

I have, however, learned what prompts my seizures, and have started to avoid my triggers.

Dehydration.
Tiredness.
Especially at around my period, but just in case, otherwise, too.

I have learned to recognise when a seizure is about to start and to make sure I am in a safe place in case it gets bigger than I expect it to, though luckily they almost never are. I still just get "dizzy", kind of confused and light-headed, for about a minute, and then it's over.

It's that difference between a simple partial seizure, and a full-on epileptic fit. I have the mild form, luckily.

I look on with curiosity what a seizure does to my brain, almost excited to figure out what areas are affected and how I react to those. I mean, I'd rather not have seizures - but if I do, at least I am going to learn something from them, and have, like, little experiments.

Yesterday, for example, I held a set of keys in my hand and was about to unlock a door. I knew a seizure was coming - I could feel it, I have learned to recognise that "weird" feeling which comes immediately before a wave - and I wondered with curiosity if I would still be able to unlock the door when the seizure was happening.

But I couldn't. I could still use the muscles in my fingers (I was moving the keys around in my hands), I could still see the keys and recognise that they were keys - but I couldn't, for the life of me, tell which one was for which door. I have 5 keys on my keyring. Usually, I know exactly which one's which: front door, garage door, bike lock, gate lock, locker.

But this time, I kept moving the keys around in my hand and thinking, "Come on, Maria, which one's the locker. You know, you've used this before. Which one fits the locker."

But I couldn't. I knew they were different, and I knew I needed one - but I couldn't figure out which one.

It's like the information was not there any more.

It has given me an insight into Jill Bolte Taylor's TED talk in which she describes having a stroke, and what it felt like to be holding a phone but not being able to recognise what number's what.



It's a surreal feeling, it really is.

For example, I know that almost every time I have a seizure, I get a recurring thought which, every time it pops into my head, I think, "IT'S THE SAME! IT'S THE SAME THOUGHT I HAD LAST TIME I HAD A SEIZURE!"

But I can never remember it once it's over. I've tried :). I've tried chanting it to myself in keywords, eager to bring this memory out of my seizure-affected brain - where an electrical activity is "tickling" some part of a nerve bundle where this memory is stored - to my "usual" brain where I am able to make meaningful connections and analyse, but...

I can't. All I do is remember thinking, "IT'S THE SAME THOUGHT I HAD LAST TIME!" but each time it's finished, it's gone. I just cannot get to it.

Or this incident with keys - testing it out if I can still use the keys. I cannot.

Or whether I can talk - I have already learned that whilst a seizure is happening, I cannot talk. I can talk up to a certain point, but then if a seizure gets strong enough, my thoughts just kind of... fizzle out and I forget what I was saying to begin with, and then once I recognise I have stopped talking, I cannot form a new thought quickly enough to start talking again; and then it's over.

It's like having little science experiments. On myself.

And also an insight into what other people feel like when they have neurological stuff going on, like Robin Williams and an article his wife wrote for www.neurology.org/content/87/13/1308.full Have you read it? It's good reading.

5 comments:

  1. Tere.
    Ma olen juba aastaid sinu blogi jälginud, mitte pidevalt aga aegajalt ikka. Nüüd loen et sul on epilepsia ja varasemast ajast tean et sul on probleeme ka kilpnäärmega. Mul on samad probleemid. Epilepsia hood hakkasid mul umbes 5 aastat tagasi. Ilmselt olid nõrgad hood varem aga suuredmaid varem ei olnud.
    Neli aastat saan päris tugevaid ravimeid ja hooge ma enam tähele ei pane kuigi ega epilepsia pole ka kuhugi kadunud.
    Kui mulle dignoos pandi siin hakkasin internetist uurima ja sain teada et selline epilepsia vorm väljendub just kilpnäärme alatalitlusega inimestel.


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    1. Mina ravimeid ei võta, sest hetkel tundub, et minu oma on mida nad kutsuvad "catamenial epilepsy" ehk mu keha on tundlik progesterooni ja östrogeeni tasemele. Liiga palju östrogeeni või liiga vähe progesterooni, ja aju hakkab tegema neid üleerutumise hooge ehk langetõbe. Kas see on kilpnäärmega seotud, ei tea, aga kuna kilpnääre on seotud nii paljude hormoonide tasemega kehas, siis täitsa võimalik. Ja minu puhul töötab hetkel "water retention" vältimine, ehk juua ca 3 liitrit vett päevas, süüa vähem süsivesikuid ja rohkem rasva, ja võtta magneesiumi, B6 ja tsingi kapsleid lisaks. Enne nädalavahetuse hoogu mul oli tegelt 6-kuine paus (siiamaani pikim), ja tundub, et nädalavahetuse hoo sain lihtsalt seetõttu, et lasin kolimise tõttu oma LCHF söömise ja rohke vee joomise taanduda, ning arvatavasti suurenes "water retention" kehas, ning sealt tuli hormoonide ebatasasus. Ja hood käivad tõenäoliselt tsükli keskel (östrogeen) või enne päevi (progesteroon).

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  2. Your attitude reminds me of Richard Feynman.

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    1. *have Googled to find out who Richard Feynman is.

      Okay, so... why do I remind you of him? :)

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    2. Because of the investigative mindset and uncompromising curiosity. Read, for example "Surely You're Joking" or "The Pleasure of Finding Things Out". I found them very inspiring and fun, too.

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