IMHO

Epilepsy, The Continuing Saga

This morning at 8am, Dr. M-, the neurologist on my unit (the Epilepsy Monitoring Unit) came to talk to me. He said that he had reviewed the readouts from the day before and wanted to talk to me about them.

Several things were apparent on the readout. First, I am a restless sleeper. Lots of tossing and turning, all of which shows up through the electrodes. Second, I was having frequent bursts of seizure activity all the time. Now, "frequent" means different things to different people. So he elaborated: he counted the seizure events I had between 5pm and 6pm. There were 50.

Fifty. In an hour. OK, that's frequent alright. The longest, he said, was eight seconds. EIGHT SECONDS. That's a long time. That's how long a rodeo rider has to stay on a bull. You can lose a lot of information if you zone out of a conversation for eight seconds or if your eyes travel over a page for eight seconds without your brain getting any information.

The other thing that was apparent from the readout was that my seizures are now "primary generalized seizures" rather than the "partial seizures" I had when I was first diagnosed (see my earlier post on types of epilepsy). They cannot make any hypothesis about why such a change would occur, they can only say that it seems evident that is has.

The thing is, Tegretol is exactly the wrong drug for people with primary generalized seizures. These seizures are the type of seizures associated with Juvenile Myoclonic Epilepsy (JME), the kind of epilepsy my brother has. The doctors tell me now that I have that same kind of epilepsy, and that while Tegretol is still controlling the outwardly visible signs of my seizures, it is not controlling the actual brain activity.

So, the first thing to be done is a medication change. I won't be taking Depakote, like my brother, because it's not the drug of choice for women. Instead, they are putting me on Lamictal (Lamotrigine). Lamictal's first possible side-effect is a rash, so everyone was very clear about not ignoring any skin problems that might crop up. The other two problems that are apt to show up are dizziness and an increase in myoclonic jerks.

No, myoclonic jerks are not the coke-bottle-glassed guys who try to pick you up in bars; those are myopic jerks. Myoclonic jerks are little muscle spasms. Lots of people have myoclonic jerks. They're those little jerks you feel when you're just on the edge of sleep and your whole body spasms.

In people with JME, myoclonic jerks are common, and Lamictal can make them worse. Usually, the doctor explained, that only happens when you increase the dosage too suddenly. So the plan for me--since I have a lot of myoclonic jerks already--is to start very slowly. I will stay on the Tegretol, since it does seem to be at least keeping me able to function in everyday life, until I can work up to a therapeutic dose. Then they will begin to taper off the Tegretol.

I will have to be very careful driving during this period, and there are times when it is not recommended at all. I am trying not to worry about that, though, and concentrate on the positive aspects of this change.

And there are lots of positive aspects. First and foremost, there's the tremendous relief of knowing that I am not imagining the memory and cognition problems. They have a cause, and they can be treated. I don't know that I can really explain how great a weight that lifts from me.

The second positive aspect of this diagnosis is that I am writing this from home. I got all my electrodes removed because the cause of the problems was so obvious that they didn't have to keep me the full five days! Woohoo!

In four weeks I will go back to see Dr. Pack, who will talk to me about how the Lamictal is working for me (I will be almost at full dose by then) and, at the same time, I will talk to the neuropsychologists about the results of all their testing and what it means.

I also have to find a psychiatrist and straighten out my anti-depressants, but I cannot help but think that will be easier as soon as I don't just kind of fade out in the middle of doing stuff!

And now, for your entertainment, here's a picture of what I look like "all wired up":

Travels with Laura: The Epilepsy Monitoring Unit

I seem to be growing into my mother's travel karma (car-ma?). At 6am Monday I called Kisco Cab and asked them to pick me up to take me down to the Epilepsy Monitoring Unit (EMU) at 7am. The driver was a little early but--being me--I was ready to go. We set off down the Saw Mill and everything was looking great when *poof...thud, thud thud*, a blowout.

If you've ever driven the Saw Mill Parkway, you'll know there are no shoulders, nowhere to pull off, and the whole thing is composed of blind curve after blind curve. We staggered along until we came to a spot where the driver could pull off into the grass. The driver called dispatch and they promised to send another car right away. In the meantime, the driver decided to attempt to change the tire himself.

Mind you, this was at the height of rush hour and the flat was on the back left of the car. I suggested that the driver might want to call the police, just for safety's sake. He deferred, saying he could change it himself. (Did he think I was implying that the police would actually help him change the tire? Clearly, he thinks I don't know much about the police around here.) Luckily, a passing motorist must have called in about our predicament because just as the second Kisco Cab pulled up, so did a police car.

On the way down to the city I was fully entertained by the second driver, who proceded to lecture me on what was wrong with American politics. (The electoral college is an outdated idea, the blue states spend all their money supporting the red states, traitors are allowed to run our government and the people have no recourse.)

I arrived at the hospital and, after wandering a maze of corridors that would confuse even a person without cognition problems, found the EMU. An absolutely gorgeous woman named Barbara checked me in and told me that Tracy would be the nurse on my unit and that Steven would be the technician who would hook up my head. I also met Dr. M- the neurologist on the unit. He was nice and exceedingly calm. I imagine that he's very good with some of the more wound up patients.

Then Steven came in and explained how the whole monitoring thing worked. He proceeded to attach 41 electrodes to my head with a product that smelled like Duco Cement and felt like E6000 jeweler's glue. He then wrapped my head in gauze to keep all the wires from catching on anything. The wires were gathered together, along with my hair, and sheathed in a "stockingette" down to where they connected to the recording box, which was put in a little "purse". The recording box had a little "event button" attached to it which allowed me to call the nurses when and if I thought I was about to have a seizure or was in the process of having a seizure. This would make a mark on the EEG, as well as on the video monitor, so that the doctors could study those particular pieces later on.

The box, in the purse, was attached by a single long cable to a computer on the wall, to which the recording box was sending information. While they were setting it up, the computer's monitor was active and it was fascinating to watch all the stuff happening on the screen. Each group of electrodes had a separate line of information going into the box. I'd say there were about 15 lines of information showing on the screen. Every time I blinked, about 1/2 of the lines showed an enormous spike. And all the lines were scribbling all the time...I just don't know how anyone makes sense of all that!

My "event button" appeared to be hypersensitive. Every time I shifted position, it would go off and a nurse would appear and ask me if I were all right. Steven came back a bunch of times trying to fix it, but to no avail. His supervisor told him that the technical problem was that the machine was "haunted." On par for machines around me!

At about 1pm, lunch was served. Salisbury steak. Now, I have an issue with Salisbury Steak. Not only do I not eat a lot of meat, but I have never seen Salisbury Steak on any menu that is not institutional. The apple was very tasty, though.

Shortly after lunch, the neuropsychologist, Dr. P- arrived. Dr. P- was very, very nice, as was everyone there. She gave me lots of tests. Tests with numbers. Tests with pictures. Tests with stories. And then, the dreaded tests with blocks. You know the one...they show you a picture, give you some red and white blocks and you are supposed to make the picture with the blocks.

During this fiasco, my sister arrived. So we stopped the testing, with the promise of more to come later. Anna had brought a fabulous drawing made by my artistic (3-year-old) niece, Leyla. Leyla had made me a picture of the sea, with the legend "And will you not be bored" written under it. My mother also arrived, with a 5-pound tin of nuts which was almost as fabulous as Leyla's drawing.

Eventually Anna and Mom left, just as my dinner was being brought in. "Chicken Dijonnaise". I ate nuts.

At around 8, the simultaneously stretched and compressed feeling on my skin and head from the electrodes and the gauze wrap had given me such a bad headache that Tracy kindly arranged for me to get some Tylenol.

Eventually, I went to sleep.

At 5:15am, Mike sent me a text message from Turkey, so I called him back. "It's awfully early where you are, isn't it?" he asked. "Well, yes," I replied, "but I am in the hospital." If you've ever been in the hospital, you'll know what I mean. It's impossible to sleep, even without the periodic interruptions of people wanting to take your vitals and do the "do you know where you are?" kind of checks. At 6am, it was time for morning vitals check, and the day began.

At about 8, Dr. M- came in to discuss what he had seen on my monitor so far. I will put that in the next post because that is where the meat of the diagnosis will be.

So Now You're a Blog Addict

Before you happened onto this site, you really didn't know much about blogs. You thought "those things are NOT for me." But now you're realizing that you can get your news and gossip via blog, and that even your far-flung family members have blogs. But who has time to check all those darn sites every day? No one.

That's why there are RSS Feeds attached to most blogs. You'll see ours down at the left where it says "Syndicate this site (XML)." What does that mean? Essentially, what it means is that a you get a "feed reader" program that checks all the blogs you subscribe to the same way your email program checks all your email accounts. In fact, most feed readers look exactly like email programs.

You "subscribe" to a feed, and your program checks that page every 5 minutes (or hour, or however often you ask it to check) to see whether there are any new posts. (It won't check for comments, just posts.) Then it consolidates all the new posts into a single page.

The picture above is of the News Reader I use -- it's called NetNewsWire. As I recall, it cost about $25, but there are definitely free ones out there. Here are links to some of the most popular feed reading programs:

Windows -- SharpReader
Win/Mac (this is a feedreader that runs through your browser so that you don't need to get more software) -- Bloglines
Win/Mac (slightly more complicated browser feed reader) -- AmphetaDesk
Mac -- NetNewsWire

MRI

Small tube + big noise + long enclosure=panic attack.

I need to get some kind of metal inserted into me--like a pin in my shoulder or something--so they can never do one of these to me again.

And hey, all that stuff about magnets making you feel better? Hogwash!

Insurance

OK, for those of you who know that I received a bill for the appointment with the epileptologist, I spoke to the insurance company today. I don't know why it's taken them so long to process the bill, but they apparently *are* paying it. So that means they *will* pay for both the MRI on Saturday and the hospital stay next week.

Next Test

My next test -- the MRI -- is scheduled for Saturday at 11. I doubt they will find anything with the MRI. I had a couple when I was first diagnosed with epilepsy and they didn't show any kind of mass. Now, it has been 20 years, but no one really thinks the memory loss and confusion are related to a growth; they're more likely to be related to something chemical than something mass-related.

Moving the Blog

UPDATE: Aha. The director of the CWRL has been most helpful during this transition. I have (at long last) managed to find the some Drupal resources. But I am not posting any kind of link here because I still don't know exactly what the address is. That means that I will keep posting here for a while, but all commenting has been turned off since the lab isn't officially maintaining MT sites any more.
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In their infinite wisdom, the CWRL lab where I used to work has decided to switch away from Moveable Type, the software on which this blog is hosted, to a new software, Drupal.

Now, I have nothing against Drupal. But I have no idea how to use it. And the CWRL has no resources on how to use it. I don't know if this is a function of the way the lab runs these days or a function of the lack of support in Drupal. I just have no clue. All I do know is that setting up this blog in MT was phenomenally easy.

So pretty soon I will probably be forced to move the blog off UT's servers. If I can find resources on maintaining a Drupal blog, and they seem to offer some flexibility, I will keep it at UT. Otherwise, it will move over to TypePad.

Travels With Laura: Atlanta

This weekend I went to Atlanta to take a couple of beading classes and see my [voluptuous] friend, Kaye. (No kidding, she told me I had to tell you that!) I've known Kaye for 20 years and she even agreed to put me up at her house and go take beading classes with me.

I arrived in Atlanta Thursday and all was good. We had a great time, even at the bead crochet class that was so badly taught that not a single student in the class got the technique by the time it was over.

We ate, played, gossipped, and generally had a good time. At about 4:45 on Sunday she dropped me off at the airport for a 6:18 flight. I used the self-check-in and when my ticket printed out, I noticed that the new time for the flight was 7pm. OK, 40 minutes late. I can live with that.

I wander around the airport, buy a cheesy novel, and go to the gate. Now the departure says 7:25. Hmmm.

At about 7:00, the gate agent announces that we can't board the plane until the crew arrives and the flight they are on isn't there yet. She announces this a couple more times before the crew finally arrives at about 7:30. As they walk up, the passengers give them a round of applause, which the crew apparently doesn't think is funny.

Some of us get aboard the plane, but then they have to temporarily pause because there's lightning and you cannot board the plane while there's lightning. Eventually everyone's aboard and the pilot says we have a "wheels up" time from Air Traffic Control for 8:22.

At 8:15, the pilot comes back on and tells us LaGuardia has a ground stop due to thunder storms until at least 9pm, which means we cannot leave Atlanta at least until then.

At 8:55, the pilot comes back on and tells us that the ground stop has been extended for at least another hour, which means that by the time we are able to leave, it will be too late for the cockpit crew, who will have surpassed their allowed 16 hours.

But in the meantime, we've pulled away from our gate so other planes can land, and they have no gate for us to deplane.

A while goes by and they tell us we're going to be towed to another gate to get off the plane. This happens around 9:45, after we've spent two hours sitting on the tarmac in the rain.

Finally, we get off the plane and they tell us they aren't going to rebook us because they're bringing in a new crew and as soon as they GET the new crew, they're going to reboard us all and we can go to NY. While we are all milling around in the gate area, the gate agent tells us that we have to "be nice and cooperative or we will have to call Airport Security and have you removed from the airport."

Unfortunately, by the time the new crew gets there, the LaGuardia airport is past their curfew, so we cannot go there. Within a little while after that, the question of curfew becomes moot -- there's a ground stop on all aircraft into all the New York airports because of rain, so they're going to attempt to rebook us all.

Did I mention that there was a baseball camp on our flight? 30 people who all have to travel together? Oh yeah.

Well, I am toward the front of the line, but the baseball guys are first and the first flight they can get me on when I get up to the front of the line is the 3:05 today. (I tried to call the 800 number to reschedule, but the automated service told me that it woudl be 20 minutes before I could speak to an agent and I only had 1 battery bar left in my cell phone. Who thought it would have taken me more than 20 minutes when I was about the third person in line??) I am the last person they can put on that flight. Everyone else is going to be even later.

So I call Kaye and she comes to get me--at 11:15 at night, 6.5 hours after she dropped me off there--and off we go to Waffle House.

Get up today, go to Pilates class with Kaye to work off the Waffle House, then back to the airport. Only there's an accident on the highway--three lanes closed on a four lane highway--so we decide to take the "back roads" through Section 8 housing, etc. A side of Atlanta most tourists definitely don't see!

I get to the airport in plenty of time, check in, flight's still on schedule. By about 2:30, my 3:05 flight has been rescheduled for 3:35. Since at least half of the people on the flight are people who were on my flight last night, there's a lot of grumbling. The designated "pissed off air traveler" goes up to talk to the agent, who comes on and explains that our aircraft is coming from NY and due to the backup in NY, it was late getting out.

They board us around 3:30. And we sit on the tarmac for a while, finally taking off somewhere between 4pm and 4:15.

Sometimes, I really wonder why I travel. At least I wasn't with my mother--she has the world's worst travel karma and if she were traveling with me, I'd still be in Atlanta!

Training for Life

I've been thinking lately about toilet training. (I can hear you know..."where on earth is she going with this one?") But I have three nieces and a god-daughter, all of whom are in various stages of the process. There are more than two years of age difference between the youngest and the oldest. Clearly, the process is not scientific and it takes a long time.

But just as clearly, the combination of shame, guilt, peer pressure, societal expectation and personal comfort does eventually do the job for most people.

In fact, it does the job so well that even in the state we consider utter relaxation -- sleep -- some part of our minds keeps track of what's going on with our bodies. The training is so ingrained that even in seizures, the people I have spoken to about it don't let go. (That's not to say some people don't lose control, just that some people maintain it.)

I've been wondering whether there's anything else that takes quite so much of a hold on us. Or whether lots of things do, and we just don't usually think about them, just as we don't normally spend time thinking about how ingrained "potty training" is.

How much actual control do we have of how we turn out, and how much is determined by a mix of biology and environment? If I decided that I wanted to change my views, for example, on the importance of education, would it even be possible given my background?

Just some odd thoughts for a Wednesday.

Bone Density Test

I had my bone density test today. It's basically an X-ray. I won't have the results for at least two weeks, but I don't expect anything evil. Although they are worried because of the length of time I have been on Tegretol, the fact is that I have never broken a bone (with the exception of my toes, which are vulnerable because my depth perception isn't so great) and my mother has terrific bones.

To do the test, they scan your arm, your ankle, and your spine. Since this is my first test, my scans will be compared to other women in my age group to see where I fall in the bell curve. From now on, I will have the scans every two years and they will be compared to my own scans to see whether there is any bone loss.