Magical Truthsaying Bastard Shadesong (shadesong) wrote,
Magical Truthsaying Bastard Shadesong

On my lost years

In September 2003, I began having complex partial seizures.

"I jump the track. That's what it feels like. I'm proceeding as normal, then all of a sudden, my brain is just suddenly wrong. I can't string thoughts together. I can't make my brain work. And I am aware when this happens. I am aware that everything is off and wrong, and I'm aware of my struggle to make the connections. And my inability to do so."

It's actually not uncommon for people, especially women, to suddenly develop epilepsy in their late 20s. I was fairly textbook in this. Two other things worthy of note: My mom says I spaced out as a kid, but that could be a retcon. And mesial hippocampal sclerosis, the lesion on my hippocampus that is my seizure focus, can be caused by untreated celiac disease.

October 7, 2003: "You never really want to hear "We saw something odd on the MRI." No matter how much you think maybe you do, you really don't." ... "I was hoping it would be something *fixable*. A growth or something - fine, cut me open and take it out and make me 100% well again. Instead, I have a small hippocampus with a lesion and a mandate not to drive anymore and two bottles of pills and a pamphlet titled "Women and Epilepsy" and a list of neurologist-approved URLs, and I'm quietly reading. Sometimes you look back on a day years later and realized that that's when your life changed. Sometimes you know that your life has just changed as it's happening. Sometimes you feel it happen."

The drugs were hell.

I'm not exaggerating. This is not hyperbole. I cannot imagine a hell worse than the drugs.

The first one I was on was Lamictal. On Lamictal, I lost 40 pounds in just a few months; this caused half my hair to fall out. I was so nauseous that I could sometimes only eat a single bite of food at a time. Constant violent nausea. Reader, I was able to eat so little that I developed scurvy.

That is not all.

For the first few months, I was unable to read. Words just slid off the page. I had profound aphasia - I could not find words. Being a writer, words are important to me! Just a bit! And I had lost them. When I turned too quickly, I fell down. I was often too dizzy to walk. My short-term memory was absolutely offline; I repeated myself constantly and was unable to retain information. Constant severe exhaustion and brainfog.

I got the reading back. But the rest of the side effects, plus some others, persisted for three years.

Three years.

Some things, like the memory, lasted even longer.

Add to the fear factor: I had no way of knowing this wasn't PERMANENT. In fact, my neurologists insisted that it was. I would beg to change medications, and they would sit me down, all SRS BIZNESS, and remind me that I had brain damage, you know, and that the damage to my memory and language centers was almost certainly permanent.


This was not the only problem I had with neurologists.

So. Lamictal happened. Then Keppra, which has psychosis as one of its side effects - and yes, I got that. Extreme mania, agitation, so much more. Topamax, which increased my already-high eye pressure to severely painful levels. Zonegran, which just didn't work. Trileptal.

Trileptal was a special hell, and I was on it for years, because it was better that Lamictal and Keppra. And I thought it was the best we could do.

On Trileptal, I felt drunbk for for hours a day.

I don't like feeling drunk, mind you. :P

And it was more than just feeling drunk. It was, for those four hours, a complete loss of balance - I could not walk. I could only propel myself down hallways by falling against the walls with forward momentum, flinging myself diagonally. I lost more weight, going down to 85 pounds. I had double vision and scrolling vision. Tremors and spasms. And still the brainfog, the complete failure of short-term memory.

The knowledge that I used to be smart.

"Twice a day, every day, I have to look at a handful of pills and make the conscious decision to effectively cripple my brain for several hours. Not just baseline-with-the-meds-in-my-system. But really nuke the fuck out of my brain. Twice a day. Every day. I know what it does to me. And I look at that handful of pills. And I swallow them."


I got off Trileptal in 2006 by the simple expedient of refusing to take it anymore. I was in the hospital for video EEG monitoring for prospective brain surgery; they crashed me off all of my meds to provoke seizures (OH YES THIS WAS SO MUCH FUN), and when they said "time to take the Trileptal again!" I said "No." Because after the withdrawal? And even with the sleep dep? I felt like myself again. I had words. I had a personality.

So then, three years of Lyrica.

And again - I thought the Lyrica was good. Because it was better than the Trileptal. I still had an almost complete lack of short-term memory. I still had profound exhaustion and brainfog I couldn't think through. I gained sixty pounds.

But it was better.

Until the suicidal ideation, which is now known to be a side effect of Lyrica, kicked in last year.

In June, I switched from Lyrica to Gabitril, and I got my brain back.

I could cry with relief over the changes. I still get very tired, but that will happen with every anti-seizure medication. But shortly after switching to Gabitril, my memory came back. My brain came back. I was me, after six years of wandering in a drugged haze.

And yeah. I was still not great on Lyrica, but I was better. Better than Trileptal, better than Lamictal. And I was thinking about this last night - about the fact that so many of my local friends would not recognize the 'song of 2003, 2004, 2005. Gaunt and spacy and constantly trembling, falling, unable to finish a sentence.


And this isn't all that was going on. My heart condition developed during that time, as did the chronic pain we thought was fibro but is probably exclusively or almost-exclusively celiac. So much. But the anti-seizure meds were the worst of it, the absolute worst.

I know, this is rambly. Am at work and stuff. Also, this is not even all of the side effects, not remotely. Just stuff off the top of my head.

From the entry about 2003's Orphans' Thanksgiving:

People with seizure disorders aren't allowed to cook. When you have a complex partial seizure, you kinda leave your body for a bit, and sometimes it does stuff without you. Like rest your hand on a stove burner. Did I forget to mention that one is incapable of experiencing pain during a seizure?

Also, as mentioned previously, I got my dosage of Lamictal raised on Tuesday. So not only have I been nauseous and sleep, but I've been experiencing difficulty finishing thoughts, keeping my head straight. And not wobbling when I walk. And using the wrong words for things. And general difficulty concentrating.

However, I was determined. And I did it. I had to stubborn through a lot of it - knowing that my brain was jumbly and fiercely concentrating on each individual step of each recipe. Still timing everything to hit the table at about the same time. Pushing through whenever the brainmeats got weird, whenever the words on the recipe cards started sliding around or I forgot the words for "table" or "garlic". mermaidblue bullied her way into taking over with the rosemary-garlic mashed potatoes, the final item, because I was having increasing difficulty thinking straight at that point, and she and Elayna also rolled the crescent rolls, but everything else, I did. Me.

I also made pumpkin bread, and molasses cookies, and the chocolate-bourbon cake complete with glaze. I did it.

Which was so overwhelming that when the last dish hit the table, I whispered "I did it," to mightywombat, tears in my eyes. And I had to go take a minute to compose myself before dramatically removing the tinfoil and declaring that dinner was served.

(It wasn't til 2008 that I let go of doing everything myself.)

This year, I am thankful for medication that gives me quality of life. I am thankful that I can once again do Thanksgiving for my friends and family. I am thankful for my memory, my balance, my ability to think in full sentences again. I am thankful that I can eat and cook and dance. I am thankful that I can see and think and walk. I am thankful that these things were not permanent. I am thankful that I am myself again.

EDIT: I am actually really interested in hearing what all of this looked like from the outside. If you knew me during this, if you've noticed the changes, do tell.
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