In case I forget.

Down with Keppra; Up with Trileptal!

Tomorrow I double the Trileptal dosage. So far, it’s been very similar to my experience with the Keppra. I’m very afraid – so scared that two weeks from now I’ll be disassembling again.

This is what happened with the Keppra:

I had hit a wall on Lamictal. It had quit working. The burping had returned quickly to its prior frequency, so Dr. Neuro A said to start taking Keppra and come down off the Lamictal. Did that. Two weeks later, upped the Keppra.

The burping had never responded to the Keppra, and I had experienced a sudden increase in cognitive problems that I already had (I’ve listed them before – most of them have to do with words and visual processing) noticed since the accident. When I increased the Keppra, within a matter of 4-5 days I really degenerated.

The burping was worse than ever before. It was almost constant meaning that a literal 99% of my day was saturated with burping, often long, extremely strong series that made it impossible for me to get air in, and a few times actually caused me to vomit. I couldn’t think straight. I couldn’t remember 5 minutes ago or three days ago. I couldn’t follow a conversation, or remember an appointment. I was losing words left and right. I had become disorganized.

And I experienced three totally new problems: I was getting lost while driving, and I physically couldn’t get words to come out of my mouth. I had the word, but I couldn’t get my voice to push the sound out of my lips. Also, I began having bizarre nerve experiences in two ways. First, random, occasional shocks that were only a second in duration. They felt like an electric needle was being jabbed into me. Very fast, very strong. Usually on my right calf or arm, sometimes on my left leg. Next, on my right upper thigh there is a patch of skin about the size of my hand that, since 1985, has been dead to touch on the surface as the result of damage during surgery to remove my gallbladder. But suddenly it had come alive with sensation. Burning, itching sensation that wouldn’t stop. I scratched it red over and over.

I was totally terrified. Bits and pieces of my brain were going away. I couldn’t make a decision. I couldn’t understand instructions. It reached a crisis point. I met with Dr. Neuro A who did a number of things. She a) took me off the Keppra over a week’s time, said wait two weeks and “if you’re still burping” start taking Trileptal and come back in 8 weeks. b) referred me to the Texas Comprehensive Epilepsy Program at UT Med and Hermann. c) wrote a script for a variety of vitamin b related blood tests, and d) sent me on my way with no guidance or support, dumping me on my Dr. PCP as an easy out.

You see, I was falling apart in her office. I was in tears. I was holding the script for the blood tests in one hand and the paper with the TxCompEpiProg info in the other, crying, utterly unable to figure out what to do. We had just discussed everything I just typed here and she sat there looking at me in my disassembled state. She asked “Why do you look so distressed?” If I hadn’t been so close to just folding up I would have laughed hysterically. My response was “Because I am very distressed!” There was more. We’ll leave it at, it ended badly.

So here I am, ready to up the Trileptal dose. Let’s all watch closely boys and girls, and see if I go away again.


Starting to think about getting worried.
July 22, 2006, 5:32 pm
Filed under: Brain Bits, Faces, Fear, Husband, Memory, RX, Seizure, Words

I’m on day nine for Trileptal and the burping is ramping up. Today it started the minute I woke up and there have been a few episode where it got really heavy. It’s not even six yet.

Talked with my husband briefly about it yesterday. He has noticed it, also. I am almost frozen at the thought of repeating the experience I had with Keppra. It made me incapable.

That’s the best word for it. I don’t remember what the dosage was or how long I was on it by the time I disassembled, I’ll have to look it up. It wasn’t a lot or very long. It was like acid for a head injury. All the problems: the words, the memory, the comprehension, the faces, got dramatically worse. And the burping itself – that was when I was certain I would just one day not be able to get any air, and die. I know it sounds terribly dramatic HA! The girl thinks a burp will kill her! HA! HAHA!

Imagine being alone at home. You’re burping. To hell with that you can’t imagine. Suffice to say that yes, I do believe still now that if the episodes continue to get worse as they have over the last four – five days that it could happen, that I could just not be able to get air.

Once, it was so bad I used a wall. I stood with my back to it, about a foot away and just fell backwards – slammed my back into the wall in an attempt to break the upwards pressure so I could gasp in a little air. It’s some scary stuff, I’m not afraid to tell you.

Last night, for the first time since the post Keppra improvement, when I went to bed I couldn’t get to sleep for a long time because I was still burping. 

In five days I’m supposed to start taking a larger dose of this Trileptal. I’m leaning towards deeply concerned. 

All I’ve Got Going For Me
July 15, 2006, 1:17 am
Filed under: Brain Bits, Dr. Neuro A, Faces, Fear, Husband, Memory, Seizure, Words

Really, my brain is all I’ve got going for me. I guess this might be true of everyone when it comes right down to it, since you know, it makes you take in air and metabolize nutrients and all that.

But in the world, some people get by on personality while still being idiots and some people get by on looks while still being idiots. Some people, people like me, just get by on their brains. I don’t have my father’s charm, or my mother’s beauty.

What I always have had is a freakish combination of their brains, both of which were pretty spiffy all by themselves.

So it’s my brain that gets me a job I can put up with, have a little fun at, survive off the income from, and still not get stuck with so much responsibility that I want to carve my own spleen out with a spoon just to be under a little less pressure. And it’s my brain that gains me my closest, dearest friends because they are all a special type of people: smart, wicked humors, deep curiosities about a wide variety of subjects, outrage over injustice, and the sense to know good beer even if they still choose to drink pig swill. My brain keeps me out of trouble, and my brain entertains me to no end. My brain attracted my precious husband regardless of what he says about my boobs.

If you take all of that into consideration you can see as how the thought of my BRAIN not being right could be, well, a little disturbing.

I am:

Losing words

Having trouble getting words out of my mouth

Having lots of trouble focusing a given task

Having lots of trouble remembering anything – where are my keys? when is my next physical therapy appointment? do I have any clean underwear? where the hell is that building I’ve driven to a hundred times in my life?

Unable to recognize faces

Making bad decisions

Using bad judgement

Doubting myself and my perceptions

Having lots of trouble with conjunctions and other small words when writing

A couple of these things I’ve had trouble with all my life. Some of them are new, post accident. They have all gotten a lot worse over the last six months.

The burping, which Dr. Neuro A says is seizures, started about a year and a half ago. The accident was two years ago.

I am terrified that I am losing bits and pieces of my mind and that it is going to continue to get worse. I am terrified that one day I will wake up and not recognize my husband’s face, just like I didn’t know him in the trauma center. I am terrified.