Filed under: Fear, Husband, RX, Seizure, Texas Comprehensive Epilepsy Program, WordPress
Ha! I just pulled up WordPress* and went to sign on. The title of this post? That’s what I typed for my user name. Hm. Guess there’s no question about what I’ll write about tonight.
I’ve stopped taking the Trileptal. Been on it about 10 days. Increased dose a day or so ago. Except for this past Wednesday, the burping has been a lot worse and getting stronger every day. Yesterday, my husband walked up and asked me a question. I was burping at the time, and he has to stand and wait for me to answer him. But then he had to stand some more. And then I started gasping between burp groupings, and I really started to get very scared.
He did too, I think. He stood there looking at me, knowing there was nothing he could do.
Finally, it stopped and I could get air in. I was able to answer his question.
His reply was, “Stop taking this medicine.”
Mine was, “Yeah.”
Today hasn’t been bad. Thankfully. I’m a good 40 hours without it, and I’m hoping to return quickly to what has pathetically become “normal”, which means about 20-35% burping, all day, every day. I was very very afraid that I would start degenerating cognitively again. I am relieved that I won’t be finding out.
Two weeks til’ TxCompEpiProg. Counting, who me? The nanoseconds.
*See? Still conforming! I want more points.
I used to be the person who, if your cat got hit by a car, you wanted to have around. Have a project due in 7 minutes that you’re dying over? I was the one you called on to make it happen. Going into labor? Hell, I could boil water. Ha.
But now, I’m different. The first really big thing I can remember being different was the hurricane this past summer. I. Freaked. Out. P-A-N-I-C. It was because of me that we ended up in the Exodus That Didn’t Happen. I just couldn’t cope. Looking back, it didn’t make sense.
I was born on and have lived my entire life no more than 50 miles from the Gulf of Mexico. One of my earliest memories is the view out of the window of a blue 1962 Bonneville as my family and I hauled it away from New Orleans the day before Betsy blew through. I’ve done floods, I’ve done wind. You stock up and keep good insurance. That’s it.
But not last summer. Last summer I was frantic to leave even though there was no reason at all for us to do so.
So the hurricane was the biggie, and there are a few specific things that I’ve had really inappropriate reactions to. One led me to my Dr. PCP and it put him in a very difficult situation that called upon him to extend a great amount of trust in me. Another time, I was driving under a train track and had a total feeling of being crushed and deafened. I had to pull over and calm myself to be safe to drive. Then, there are a million day to day things that are just…different.
I just don’t trust myself to react the wasy “I” should to anything stressful. I have missed a lot of work not only because of doctor appointments, medical tests, surgeries, and physical therapy, but also because I just can’t focus. I have the project in front of me but I can’t get my head around it. And new things coming in just overwhelm me. It feels like everything that hits my desk is just huge.
This morning there were strong storms passing through town. I used to L-O-V-E storms. I craved them – would go stand out in them. Today, I left my house and got about three blocks down the road. It was raining – hard – and there was a lot of lightening. A bolt hit pretty close – I saw it come down – and I was so scared! I tried to go down my normal route, but there was so much standing water I didn’t trust it.
I tried another route, but there was a lot more lightening, and I just turned randomly to get off the main road. I actually got lost. In my own neighborhood. Less than a mile from my home. I was only lost for a few minutes, and I knew I was in my neighborhood, I just couldn’t figure out which street went where.
I’m not me.
Filed under: Brain Bits, Dr. Neuro A, Dr. PCP, Fear, Memory, Neuro, RX, Seizure, Texas Comprehensive Epilepsy Program, Words
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.
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.
Filed under: RX
There are all these pills. They have to be taken daily, at least.
The hard ones are of course the ones that keep changing.
Last night, going to bed.
There’s this big pill box. It has seven little individually covered boxes inside of it. It’s ugly, opaque white plastic. The guy at (what the HELL is the name of that vitamin shop? damned) gave it to me when I was in there buying something else. You pretty much have to have one to take pills like I have to take pills. Opening and closing all the bottles and not getting them mixed up every freaking day is took hard. It’s easier to only do it once a week.
There it is, the pill box, on the table by my bed. Seeing it reminds me that this Trileptal is a twice a day thing, early and late. So I open the big box and then the correct little box inside the big box, but the little box is empty.
Which means I have to find all the pill bottles, and also the big stack of teensy weensy Trileptal sample pill bottles and snap and sort and click shut – but I also have to find my calendar because I don’t know what day I am on in the ramp up on the Trileptal, and I don’t know what dosage to put in the seven little boxes.
So back into the living room, turn the lights on, into the kitchen, back to the bedroom huffing, annoyed.
It had been a good day. Quiet, at home with my husband. To a friend’s house to play cards in the evening. Nice. A little pressure from trying to keep up with the card games and not feel/look/be stupid. Half a Xanex helped*.
Then, back to reality – back to sorting and counting and clicking the seven little boxes shut.
*Impossible to clearly explain how much I despise being a person who would say “half a Xanex helped”.
Filed under: WordPress
Finally got the Flickr widget to work, ditched the Visuals page. MMMMMMMmmmm. I love geekstuff.
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.
One of the things I need to do here is record how I’m doing seizure-wize. Assuming of course that this burping this really is what Dr. Neuro A says, partial simple seizures. She said when she read the EEG that it was clear as day. But then, when she referred me to the Texas Comprehensive Epilepsy Center she said she didn’t know what the hell was going on.
We don’t know what the hell is going on, and won’t begin to learn anything new until at least the middle of August, which is when the first appointment was available.
So I’ve created a Seizure Toteboard over there on the left. I’ll use it to track my symptoms because remember I HAVE NO MEMORY. And because doctors are scientists which means they pay a lot more attention to YOUR opinion if you can actualy quantify the facts for them instead of say something remote like “I burped a lot yesterday!” I’ll back track to the last day I remember and update regularly.
This is the formula:
Date // XX% of time w/burping during any given day // Type of burping i.e. series of burps, often long and connected by short breaks or random burping here and there. Each day is usually mixed, but most days the serial type is dominant. // Strength of burp from very light to horrific i.e. can’t get air in, vomiting with burping, etc. // Comment or note.
7/14 // 40% // medium // serial // very tiring, breath issues
7/13 // 35% // medium, a few strong // mixed //started Trileptal 75mg bid. Eight day since stopped Keppra.
7/12 // 55% // medium to very strong // serial
7/11 // 30% // light to medium // random, a few serial
I’ve added a “What does it look like” page. There is a link there to photos that relate to the things I am here to talk about. The first set shows the only fatalities of the accident. Specifically, my first Miata.
And so begins the third anti-seizure medication. We’ll play catch up later on the other two. But today is Trileptal (oxcarbazepine) day.
When I last saw* Dr. Neuro A, she said “After you come off of the Keppra (levetiracetam), wait two weeks and if you’re still burping, start this.” She handed me a bunch of samples.
This statement is indicative of my entire problem with this doctor. IF I’M STILL BURPING? LIKE, IT IS GOING TO MIRACULOUSLY JUST STOP???? After about a YEAR AND A HALF????
Well I’m 8 days out from Keppra and screw this. The burping has returned to “normal” which is pretty fucking ABNORMAL. I went over the whole discussion with Husband tonight and we agreed there’s no real point in waiting so I took half a little ugly mustard brown pill tonight.
Let’s see how this goes. I’m looking for four things:
1. Will it decrease the burping, maybe dramatically, like the Lamictal (lamotrigine) did?
2. Will it make me crazy like the Keppra did?
3. Will it kill my appetite and cause me to loose an additional 34 pounds in about 8 weeks?
4. Will it make me bat shit horny like the other two did?**
Please note that the order of these four item’s importance sometimes changes for me throughout the day. Ha! It only took three or four days for side effects #3 and #4 to kick in with the Lamictal, and it only took a short while for side effect #2 to kick in with the Keppra, although admittedly it built to a phantasm of a finale.
*Unfortunately not the last time I’ll see her, but more about that later.
**That part hasn’t completely worn off, thank goodness!
In case I forget. 