Category Archives: Epilepsy

And it’s not Epilepsy after all…

So, after nine months of medical testing, and four months of medication induced hell, an exam from an independent source has determined I do not have Epilepsy.

Well shit.

The leading Epilepsy treatment center in the nation is located in my backyard, and thanks to the love and care of some of my friends from law school, and their dear parent who works at said center, I was able to get in to see a specialist well in advance of the normal six month wait most people have to follow to get seen. The doctor who saw me reviewed my records, tested me carefully, did a thorough history, and then announced that I do not have the dreaded Epilepsy.

What I have is a movement disorder, or basically, the worlds longest lasting hand cramp.

I do not have Epilepsy because my “seizures” jump from one side of my body to the other, without making a visit in between. I do not have Epilepsy because they can last for hours, instead of minutes.

This means I do not have to stay on this mind altering, taste altering, attitude altering, weight dropping, joint pain causing, misery enhancing, neuropathy causing, nothing seems to make me happy, anti-seizure medication for the rest of my life.

I am ramping down off of it as we speak.

I am still going to have my normal neurologist track my symptoms, just in case the other doctor got it wrong. However, everything she said made sense, and looked and sounded like sound science to me. My Epilepsy never acted like anything my Epileptic friends had gone through, and the medication had stopped helping a while ago. Oddly, Topomax is prescribed for movement disorders, so the fact that it helped initially makes sense. However, the other side effects I have make using it for me a bad idea.

So, despite being initially really mad that I had spent so long being in pain caused by medication for something I don’t have, I am cautiously optimistic. Hopefully whatever treatments are in store for the movement disorder are much better than the treatments I am currently coming off of. Hopefully I can eventually get this under control and treat it with massage and yoga, otherwise known as lifestyle changes.

Hopefully this will actually be my final diagnosis.

Another “Topo” moment…

I borrow the above lingo from my friend Kate. I have been experiencing an increasing number of unpleasant side effects from the Topomax. (My medication of choice for controlling the Dr. Strangelove style seizure accompanying my form of Epilepsy.)

Yesterday and today I have been trying to ignore a ridiculous level of joint pain and the sense that someone took a whip to the bottoms of my feet for several hours. My gums are super sensitive to pressure, bleed at the drop of a hat, and the inside of my lips feel as though I have been sucking on sour candy for days on end. The most frustrating part is that my doctor is refusing to consider that these problems may be caused by the drug. As if, in addition to suddenly coming down with Epilepsy, I have also simultaneously developed sudden onset rhumetoid arthritis, gingivitis, and a number of other ailments.

I asked her if she had ever heard of Occam’s Razor, or the law of parsimony, and then promptly scheduled an appointment with the University of Colorado Advanced Neurology Department. Thanks to a friend’s Mama, who works there, I will be seen at the end of the month. It usually takes four to sixth months to get in to see these doctors, as this is the national leading clinic for the treatment and care of Epilepsy. I am happy there are people who love me and are willing to call in favors for me right now. Bless them.

I am feeling less scattered, but still seem to be forgetting words. This terrifies me on so many levels, because I rarely if ever forget anything. One of the reasons the law appealed to me, litigation in particular, is my ability to recall, with nigh perfect clarity, conversations, things I have read, etc.  It has helped me in the courtroom on more than one occassion. This “side effect” of losing short term memory and being unable to remember words is making my job very difficult to do indeed. I am going to have to stop this drug for that reason alone if it gets any worse, regardless of how effective it has been at preventing migraines and seizures.

I only have two weeks until the new doctors examine my files, my tests, and me. Maybe they will have a different take on medication. Maybe Topomax is not the one for me, despite being 22 pounds thinner and headache free, I am thinking the downsides outnumber the up.

And your doctor is no longer here…

Hello, I would like to place you on a medication with side effects that include the following:

Anorexia, depression, metabolic acidosis (ph imbalance of the blood that can result in blindness, kidney failure, coma and death if left unchecked), and suicidal thoughts. Would that be all right with you? Excellent.

By the way, I will only respond immediately to concerns about any side effects you may experience while taking this medication during the first two weeks you are on it, after that my rapid pit bull of a receptionist will do everything in her power to hang up on you as quickly as possible each and every time you call. Got that?


The battle with insurance begins…

Yesterday I woke and instantly called my pharmacy. I didn’t have enough tablets to take my morning dose of anti-seizure medicine. The end of the bottle had come a lot faster on six tablets a day than it had on four tablets a day, and therfore had caught me off guard. Luckily the pharmacist agreed to fill it fast so I raced out the door to pick it up.

When I got there he told me the insurance wouldn’t cover the refill for another two weeks.

What? Why not? This medication, the generic version, is THREE HUNDRED DOLLARS A BOTTLE. The insurance had damn well better cover it. I can’t afford to pay for it and the bottle is printed all over with statements proclaiming how dangerous it is to suddenly stop taking this shit. What on earth does the insurance company think is going to happen if they randomly stop paying for refills?

Then the kind pharmacist asked me why I was out of the most recent refill already. I explained to him that I am still in the ramp up cycle to my final dose, and am therefore taking six 25 mg tablets a day. So 70 of those tablets don’t really last that long. He asked how many I needed before I jumped to the next dose level. I did the math and told him, 18.

He got on the phone, and got it paid for.

I got home and took my pills, but not without a healthy dose of depression.

My lovely epilepsy pamphlet, websites, and friend have all warned me that my future will be filled with battles with insurance companies over coverage for routine things for my healthcare.

My life was so beautifully uncomplicated before all this.

An Epileptic Lawyer walks into a courtroom…

I went to court today for a hearing and nothing unusual happened during the hearing!!

I didn’t have a seizure, my face didn’t twitch or flutter, I didn’t have trouble focusing or staying awake, and I wasn’t unfocused or forgetting half the words in the English language!!

Of course, the second it was over my blood sugar crashed, my right thumb started to spasm and my face began it’s wierd little muscle dance but during the stressful and emotionally charged hearing itself I held it together!! Thank god!! I was so afraid I was going to go into court and have a moment where my face twitched just visibly enough that the Judge thought I was laughing at her.

“Counselor. Do you find something amusing?”asks the woman in the flowing black robes as she holds my clients future in her hands.

“No your Honor, I apologize, I’m Epileptic and my medication causes odd and unfortunately timed facial twitching. I swear I am not laughing at you.”

I could barely sleep last night as images of this and other side effect related issues flooded my imagination. I was so stressed out this morning on my way in. I so rarely appear in court these days anyway, as most of my practice is settlement, that appearing in court under these circumstances just seemed really unduly stressful.

Not only did I not fall apart and seize uncontrollably in reaction to the added stress, I kicked ass in the hearing too.

Today is a good day.

Le twitch, twitch…

I upped my medication last night because I couldn’t stand the constant low level muscle seizures anymore.

My hands twitch their steady low throb more often than not these days, yesterday and the day before they just didn’t bother stopping. Upping the dose seemed to help initially, but then I ended up with a relatively strong seizure in both hands for about an hour. They kind looked like one of those claw machines inside the Wal-Mart, where you can maneuver the pronged “hand” around to pick up a toy, my fingers twitching in and out like they were being operated by an impatient toddler. It tires out my muscles and makes my arms sore, but is kind of interesting to watch if I can detach myself from the whole “those hand belong to me” aspect of it.

Still, I guess I am happy that they aren’t just fluttering all damn day long. My face still twitches when I get too stressed, so my cheeks hurt all over as a result. I guess this will be a better anti-wrinkle treatment than those silly electric shock devices you can glue to your cheeks and zap yourself with, right? I will have amazing facial muscles by the time this is all through, be 30 pounds lighter, and still hate the taste of all things sugary. I guess there are worse ways to maintain one’s youthful vitality.

At my 20th high school reunion everyone will look at me and think “skinny, tight-skinned bitch” instead of “Oh! You poor epileptic thing you.”

That’s something.

A better frame of mind…

I find myself in a better frame of mind.

My doc seems to see no problem whatsoever in me having more children, though I will absolutely not be taken off the meds at all, period, ever. Apparently the risk of birth defect caused by seizure is significantly higher than the risk caused by medication. Hmm. I guess we have some thinking to do.

I also have had a chance to slow down my ramp up and adjust a little bit to my medication, even though slowing down has resulted in two straight days of seizures in my left hand. They are very minute now, and feel rather like a muscle spasm, so I can handle them much better than I used to, though they are currently accompanied by that fluttering facial twitching which wears my face muscles out and freaks my soul out a bit. Ok, a lot. Still, I am less tired, and other than today have been generally feeling better.

The best news, I rediscovered a friend. I went to a drum circle on Saturday with a long time friend and while I was hiding on the fringe of the circle with her, wondering if I should stay there in the rain or hide near the bonfire and warm up, I saw the silhouette of a friend from long ago. I snuck up behind him and placed my hands over his eyes, like I had done a million times before in a prior life. When he spun around and recognized me it was like a homecoming. Best of all, he has Epilepsy, has dealt with it for thirty-three years, and has already spent hours this weekend talking me through this diagnosis. I feel as though my feet have found solid ground to stand on again. He has promised that I can call him anytime with concerns and questions. I feel so much better just having someone I know and trust to talk to about all this, someone who actually knows what the fuck it feels like, and someone who knows me well enough to ask me embarassing questions and answer the same with complete honesty and aplomb.

So this weekend has been a good one, and ends with me in a better frame of mind. I have a new strong hand guiding mine as I find my way through this maze, and am feeling blessed.