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Scheherazade in Blue Jeans
freelance alchemist
On my lost years 
23rd-Nov-2010 10:14 am
Sick Hippo
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.

Hell.

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."

Years.

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.

Years.

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.
Comments 
23rd-Nov-2010 03:23 pm (UTC)
I met you towards the end of all that, but oh, I remember.
23rd-Nov-2010 03:27 pm (UTC)
I'm actually really interested in hearing other people's perspectives of the changes. Thoughts?
23rd-Nov-2010 03:36 pm (UTC)
Hmm. Definitely less scattered thinking, like you say. The physical thing is the part that stands out most strongly in my memory, because it *was* so drastic. Everything else was gradual enough that it didn't really register until later. And I wasn't really spending a *lot* of in person time with you until after you got off the Tripethingy (sorry, responding in email form and don't have the spelling in front of me). But I remember the change in your posts from the hospital visit after the withdrawal started to fade. And more recently, I remember the change when you started getting the celiac worked out and stopped being in a fog all the time, and that one also registered pretty strongly.
23rd-Nov-2010 03:23 pm (UTC)
I read this whole post.
I am thankful that you are you again!
(Deleted comment)
23rd-Nov-2010 03:27 pm (UTC)
Yes!
23rd-Nov-2010 03:30 pm (UTC)
23rd-Nov-2010 03:31 pm (UTC)
I'm thankful too! *hugs* SO thankful. <3
23rd-Nov-2010 03:33 pm (UTC)
This is a really lovely piece of writing -- thank you for sharing with those of us who haven't known you for so long. I'm thankful you found a med that works.

(This is one of the reasons I have such a love-hate relationship with Big Pharma -- I know that the reason they keep churning out related drugs for the same indication is the bottom line, and I hate that, but for some conditions -- extremely heterogeneous conditions like seizure disorders and schizophrenia and other neurologic issues -- those little (or big) tweaks to the molecules make ALL the difference for an individual person with one of those conditions. So, yeah, Big Pharma is all about churning out new atypical antipsychotics right now and expanding their indications to make money, but the new drugs may work for some people, for whatever condition, for whom the existing drugs haven't worked, and... yeah. Love-hate.)
23rd-Nov-2010 03:38 pm (UTC)
Yeah, seriously. It's deeply frustrating... and there are so many drugs to go through, and all of them do horrible things to the brain and body. It's been a constant battle. Do I settle for this level of disability? Or do I try another medication that might be better, but might be worse? And you need to allow several months to know for sure how it's affecting you, et cetera. It's years of struggle and a full-time job. (I had to go from full-time to part-time during this, then lost my job altogether, and was not able to do actual work until last fall.)

I think the refusal to give me older drugs like Neurontin was totally a Big Pharma thing. They utterly refused to put me on older drugs with lower side-effect profiles because I was (am) a Woman of Child-Bearing Age, and those meds have a higher risk of birth defects.
23rd-Nov-2010 06:07 pm (UTC)
Gah. I can't even imagine. Even though I've written about this for pharma training, I don't think I've ever been allowed to adequately address what this kind of musical meds game does to the patient and the patient's life (Big Pharma always wants the focus on what the disease does to the patient's life, not what the meds can do).

(Someone I know recently tried Lamictal for bipolar and promptly developed early-stage Stevens-Johnson syndrome. Skin-peeling-off fun for the whole family! So Lamictal fills me with all sorts of dread and horror.)

What always gets me about the choice to ignore older drugs with known safety profiles and lots of safety data in favor of "safer" newer drugs is that factor of whether those newer drugs really ARE safer, or if the questionable side effects just haven't shown up in premarketing and what little postmarketing data they've got... yet.

Probably would've been nice for your prescription costs if they would've tried some of the older meds. Looks like Neurontin would've just come off patent around the time you were first diagnosed in 2003 (I'm not sure if it had a first-in-class 10-year or a regular 7-year patent), so I think you're completely right about the Big Pharma thing. Pfizer sitting there saying, "Please use our new, more expensive, still-on-patent drug, Lyrica!" Pfooey.
24th-Nov-2010 04:43 pm (UTC)
what this kind of musical meds game does to the patient and the patient's life

Yes. I was having fewer seizures, but so very little quality of life.

whether those newer drugs really ARE safer, or if the questionable side effects just haven't shown up in premarketing and what little postmarketing data they've got... yet.

Oh, any number of times, I got "you're imagining it, because that side effect isn't in the PI." Guess what? They're in the PI now.


Edited at 2010-11-24 04:43 pm (UTC)
24th-Nov-2010 05:09 pm (UTC)
Oh, any number of times, I got "you're imagining it, because that side effect isn't in the PI." Guess what? They're in the PI now.

ARGH. I HATE the whole "you're imagining it" -- it happens even with regular drugs, but I seem to hear about it SO MUCH MORE with people on neuropsych meds. Even if it IS in the PI, the doctor will often drop his/her pants in the "it's all in your head" dance.

I knew someone who was put on amitriptyline for migraine prophylaxis. When she explained to the doctor that it a) made her depressed and b) caused her to have horrible nightmares, the doc proclaimed that both were impossible because a) it was an antidepressant (as if all antideps don't have paradoxical depression as a potential side effect on the PI) and b) nightmares weren't in the PI. A few years later, I found a throwaway line in a medical textbook about a rare side effect of amitriptyline: severe nightmares that were linked to depression. Funny that. It's still not in the PI, but a little research would've shown that it was a valid complaint.

So many doctors don't want to crack books, or EVEN the PI these days.
23rd-Nov-2010 03:36 pm (UTC)
I watched from afar, reading your posts about the problems the diseases caused you, and felt very sad for you. But for some time now, you've had no complaints at all; you've learned a new way of living, and you are taking a medication that isn't causing you severe side effects, and the result is an effective, busy woman.

Thank goodness!

23rd-Nov-2010 03:39 pm (UTC)
Well, I wouldn't say no complaints! ;) But yes, I'm actually functional these days. Life. I have one.
23rd-Nov-2010 03:44 pm (UTC)
I don't think we met until this year, but I'm fascinated seeing what you've lived through and what has made you into the person I like so much. This sounds like total hell and I'm glad you feel like yourself again.
23rd-Nov-2010 03:56 pm (UTC)
I've known you via LJ since around 2002. I remember watching you go through all this. I'd often wince when I read something in an update, and wish I were closer so I could offer something more than a long-distance hope that you'd get better.

I think my greatest concern for you over the years was when you lost so much weight and lost some of your hair.
23rd-Nov-2010 04:02 pm (UTC)
I remember how physically fragile you were (or seemed) when we first met. I felt I had to be careful giving you a hug so as to not break anything.

I also remember you telling/explaining things multiple times in short succession, loosing the thread of conversations and having to be told things several times over.

But you were also intelligent, interesting, charming and an actual force of nature at the same time.
24th-Nov-2010 04:44 pm (UTC)
I also remember you telling/explaining things multiple times in short succession, loosing the thread of conversations and having to be told things several times over.

That was one of the most traumatic things for me. My brain not working, and me knowing it wasn't working.
24th-Nov-2010 05:02 pm (UTC)
Those whose brains have never worked cannot imagine what it feels like. (I suspect that category includes most of neurologists you've had.)

I was really very leery of anti-depressants for that reason, as I'd seen them do that to a friend. So far, I've been mostly lucky.

But I really don't like painkillers stronger than aspirin/ibuprofen/acetaminophen because of what they do to my ability to reason and remember.
(Deleted comment)
24th-Nov-2010 04:46 pm (UTC)
That was the 'song I knew, and called 'song. But when you switched to Gabitril, I started calling you Shira.

As I said in chat, but will say here too - I find this fascinating!

And thank you *so* much for seeing the fat-soluble thing! Phew.

And yeah, I'll always be tired; that's one thing that all the meds have in common. But otherwise I am so much better now! Tremendous relief!
23rd-Nov-2010 04:17 pm (UTC)
Having read your blog for many years now... One of the biggest changes over time is your willingness to accepts your own body now and how far you can and can't push it. Beyond the drugs, you fought any limitations you had in the beginning. So you were always frustrated at yourself for not meeting your own expectations. But now by doing less it seems you get more done- working part time, having help with cooking on Thanksgiving, limiting the number of people you'll have at your house for Blogathon. In 2003 you would have fought against any of those things. Life is more about balance now. Or at least it appears so from the outside.
23rd-Nov-2010 04:53 pm (UTC)
I have nothing much to say, but how awful for you to go through all that!
23rd-Nov-2010 05:03 pm (UTC)
Nothing to add, but ask me about dexedrine on 'script (in third grade) some day ....

Oh, and thankful you are you.
23rd-Nov-2010 05:07 pm (UTC)
Having come to your lj last year (when mbarr sent me there for Arisia goodness, I think I have only known you on the Good Drugs. Mostly what I have seen is you fighting celiac issues, which can temporarily waylay you, but not the way that the seizures did (I imagine).

Part of me is fascinated by all of this, as I have a friend who suffers from chronic debilitating migraines and no one knows why. She is currently pregnant, and dropping all the drugs has made her an *unhappy* lady. She is finally coming around to the hard fact that breast feeding is not an option if she wants to be a sane mom. She has gone through so much medication drama, and none of it seems to work well enough to allow her tolerate small spaces with raised voices. She, like you, is one of those fiercely independent people who wants no help - even when she needs it. And none of us know how to help her.
24th-Nov-2010 04:49 pm (UTC)
Patience is the big thing. Medical issues are a lot to struggle with, especially for we fiercely independent people who were raised to never ask for help! But as fortunavirilis noted in the comment above you, I got to where I could accept and ask for help. It can take a while.
23rd-Nov-2010 05:17 pm (UTC)
I remember it all - and keep your story handy for all new diagnosed people. As a 'here, this can happen to you with all the best intentions in the world, happen to you.'

And it has a good present - not ending, there's no end to this - but a good present and a positive outlook for the future.

Keppra. *spits* NASTY.
23rd-Nov-2010 06:18 pm (UTC)
I read this.
23rd-Nov-2010 08:44 pm (UTC)
I have a long standing loathing for neurologists & Big Pharma. While over the long run the meds may have helped, I would have liked to keep my hair & could have done w/out the extra 100 pounds.

If I could get my hands on that one twit neurologist, I'd strangle the bastard. You don't *up the dosage of the meds w/out looking at the last blood test results. =rolls eyes= Thanks to him I spent a year of Uni stoned out of my mind on a near lethal dose of my meds. (How in the name of Cthulhu I manage to pass Uni-level French in that state, I dunno. I don't even remember taking the exam for it...)
23rd-Nov-2010 09:20 pm (UTC)
Yikes! After reading all that, my brain problems seem miniscule. But I can definitely relate to the feeling of knowing that my brain can work better than this and just isn't. It's like I'm an unreliable narrator of my own life. Perhaps the most scared I've ever been in my life was when I woke up in the ICU after my first seizure and, try as I might, could not remember the names of any of the kings and queens of England. I remembered that one of them as a fat guy with a beard and a hat (Henry VIII), but other than that all the history I had spent the last 6 years studying was just gone. I experienced a smaller version of that panic yesterday when I was typing a report and didn't recognize any of the medications in the medication list; this turned out to be because the patient was from another country and these were all foreign brand names, but there was still a long moment when I was afraid that a large chunk of my knowledge had gone missing. (I really didn't intend to ramble on so long here, but this all just fell out in a mad rush.)

Anyway, I'm glad you're doing better. I didn't know you then, so I don't know what the changes look like, but I'm very glad I know you now.
23rd-Nov-2010 10:01 pm (UTC)
Trileptal, Lamictal, Keppra, Lyrica, Galbitril -- it sounds like you have been fighting strange gods, passing through trials in their curse-lands to find yourself again, to find a patron that wouldn't try to absorb you completely. Hungry gods who demand you consume them that they may consume you.

I'm glad you're out of their power.
24th-Nov-2010 04:57 pm (UTC)
I love this comment. I love it a lot.
(Deleted comment)
27th-Nov-2010 07:29 pm (UTC)
That was terribly lovely.
23rd-Nov-2010 10:57 pm (UTC)
Interesting reading! Thank you.

If you knew me during this, if you've noticed the changes, do tell.

I haven't been in your vicinity often enough to have many data points on the physical changes, but even spread through the four? Five? times we've seen each other in person, you have obviously been progressively more physically capable.

I have definitely noticed mental changes. I remember early conversations with you where you'd zone out and forget what we were talking about, or sometimes even forget that we *were* talking, and start talking in the way one does when one is breaking a long silence.

Your memory has always stood out for me as having a huge impact in your life. I've seen you lose good friendships over (what looked to me from my perspective as) fights based on memory issues and your reactions to those fights. :(
24th-Nov-2010 04:59 pm (UTC)
I've seen you lose good friendships over (what looked to me from my perspective as) fights based on memory issues and your reactions to those fights. :(

*nod* To be fair, a lot of fights were based primarily on things it would be uncouth to haul out on LJ.

And some were based on things that were uncouth to haul out on LJ but got hauled out anyway, but I cannot control the behavior of others, et cetera.
24th-Nov-2010 08:35 pm (UTC)
No intentions to haul anything out here!

I've only directly seen it once.
24th-Nov-2010 12:15 am (UTC)
I've been following you online for a couple of years now (?), and your writing and descriptions/pictures of yourself have definitely changed.

Also, I want to thank you for writing so openly about all of this when you can; it has helped me a lot to fight for better care and to be reasonably patient with the walking lab rat syndrome while my doctor (I have a doctor who listens now - a big plus!) digs for things that help without too many side effects.

Also, for me, it doesn't seem to matter what SNRI it is, it's evil. Lyrica=lost 10 days, ongoing after affects I fear are permanent. Savella =minimal help with pain, major disruption to sleep patterns and digestive system. Cymbalta=shaking so bad I sent myself into full blown flares trying to cook or keep my teeth from chattering.

This week we're trying Trazadone (I don't sleep well which exacerbates the pain and fatigue), after Ambien gave me migraines, and Nucynta made me so fuzzy and constipated I decided the pain was better than the drug.

My doctor thinks the last doc was crazy for prescribing ketamine, but if this doesn't work, I'm going to beg for him to let me try it again. The occasional visual hallucination wasn't a big deal to me, and it knocked the bad pain days down quickly without knocking me out to do it.
24th-Nov-2010 04:58 pm (UTC)
Good luck!
24th-Nov-2010 02:13 am (UTC)
It's such a bitch to find a neuro who both knows their stuff and will listen to you.

My current one is an arrogant ass (though he admits being somewhat defeated by Dragon) but he knows his stuff when it comes to MS and says "shit" at least once a visit (which amuses me greatly).
24th-Nov-2010 01:53 pm (UTC)
I "met" you on LJ right when you were first diagnosed, and I remember the ups and downs and the ARRGH that seemed to permeate your journal. I know you didn't write as much as you do now.

It's hard for me because I've been following it the whole time, and it's been so gradual that it's hard to gauge until you look back on it all at once.

I do remember the post where you said you got your life back, and Adam said he got his wife back. ♥
24th-Nov-2010 05:00 pm (UTC)
Yeah. Poor Adam deserves a medal for this!
24th-Nov-2010 02:26 pm (UTC)
I remember.

I didn't know you well enough to see everything, of course, but I know that the first time I heard you really laugh in that awesome boisterous way you do (which is one of my favorite things about you) was at Blogathon.

When I first met you, you were small in size and small in personality (Not content-small, but magnitude-small if you know what I mean). Now your personality is way bigger than you, which is how you are, and that is amazing.

I'm so glad you survived, and that I got to meet you for reals, years after I technically met you.
24th-Nov-2010 05:01 pm (UTC)
your personality is way bigger than you

I get that a lot!

It's bittersweet - when people talk about my laugh these days, I always think of irana. She had a huge boisterous laugh on her! Bigger than mine! And I miss her.
24th-Nov-2010 05:18 pm (UTC)
She did. I liked that about her, too.
(Deleted comment)
27th-Nov-2010 07:30 pm (UTC)
I didn't see most of it. I met you in.. 2007? (late 2006?) I was gone in 2009. I saw mostly the tail end as you were coming out and regaining your brain.
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