Guilt by Paula Apodaca

Paula has elequently penned another great post concerning the guilt many of those with epilepsy feel with regards to how their condition affects those around them. I tried to select a favoite part, but the whole post was super awesome. Here are the first two paragraphs to whet your appetite...

Guilt connects deep inside of us at that vague junction between an action taken and an action withheld. A core understanding of E. is the recognition that as persons with it, we cannot control the actions of our seizures with certainty. Epileptics and their families learn how to keep silent about the condition, preferring not to speak too loudly about it because to do so might engender more problems than support. In that silence we quietly learn to devalue ourselves. We learn to be guilty.

There is little social history we can lean on to make us feel more comfortable. We can become fixed on our own relationship to epilepsy and can spend huge amounts of time and energy on it. Rarely have any of us seen ourselves seize, but many of us have experienced the aftermath of a seizure’s power and the residual effect it can have on those around us.

Heros and Self Loathers

Paula Apodaca wrote an excellent post on her blog E. is for Epilepsy about her personal reflections about famous people affected by seizure disorders. Here is a snippet, but read the whole thing...

For my own part, I can't say I feel better about myself knowing there have been famous or historical persons with E., but I do find reading about them as interesting as their works.

Of the ancients, Julius Caesar and Socrates are presented most frequently. Napoleon Bonaparte is often pointed out, but unfortunately, the only lesson I took away from Napoleon's story was that his E. betrayed him in the end, at Waterloo.
I liked writers with E. much better. Fyodor Dostoevsky filled my adolescent hours with great drama; Edgar Allen Poe, entertained me with horror stories; Count Leo Tolstoy made me cry.

VNS Settings Changed

As I had 2 Tonic-Clonic seizures last weekend, I decided to get my VNS settings adjusted. Dr. Dean suggested reducing the off time from 1.8 to 1.1. She thinks that the more rapid cycle of the VNS will improve the effacacy. Nurse Cindy made the change last night... hopefully this will help.

Symptoms of fear of antique furniture

This is absolutely crazy. If you type in a Google search for symptoms of fear of antique furniture, Living With Epilepsy is the first hit. Crazy....

Survivor’s Guide to VNS: Part 9 – Device Settings

You need to know about your device settings before your Dr. turns it on. Not all physicians, nurses, or technicians know their device settings well. In fact, you may be their first patient… Or you may be the 10th patient that they have mis-programed in a row… Errors in device settings could be completely accidental… maybe the doctor forgot to bring his reading glasses that day and confused a 0.2 with a 2 and confused a Signal Frequency with a Signal OFF time.

So understand the settings, and make sure that you check them out before they activate or change settings on the device. Take responsibility for your own device settings. It’s your life. It’s your device. It’s in your body.

What are the settings?
The settings you need to be concerned about are: Output Current, Signal Frequency, Pulse Width, Signal ON Time, and Signal OFF Time. Doesn’t make much sense, right? Here is the layman’s description of what each is:

Output Current
This is one measurement of the amount of electrical energy that is sent to your Vagus nerve. It is measured in milli-Amps (mA). If you think of electricity as waves crashing against a beach, this would measure the height of the wave.

Signal Frequency
This measures how many times per second that those waves of energy are sent to the nerve. The frequency is measured in Hertz (Hz). Imagine again those waves crashing against the beach – how many waves per second is the frequency.

Pulse Width
This measures the width of the electrical signal. It is measured in uSec… which is a number hard to comprehend, but it is another indication of how much electrical energy is sent to your nerve. Just imagine the water waves again and think about how much water comes with each wave. This measures the part that you would have to dive through to get to the other side of the wave.

Signal ON Time
How long the pulse generator sends electrical energy to the nerve. Using the water analogy again, the waves might wash against the beach for 30 seconds and then stop for a while.

Signal OFF Time
This is a measure of how long the VNS waits between sending signals again. No electrical energy is sent during this time.

Good Weekend... Not So Much!

Scott had two gran mal seizures over the weekend. Two in a 20 hour period, one on Saturday afternoon and another this morning. Both came as he was eating here at home. I am grateful that Scott was not injured too badly. Other than a few bruises, no one would ever know that Scott had had a seizure... or two. Scott seemed to recover quite quickly after the seizure on Saturday but less quickly this morning after the second seizure. There does not seem to be a clear pattern as to why these seizures occurred. Scott has been taking his medication regularly and has not missed any doses. Perhaps he is still not able to get the rest his body needs. Dr. Dean has stated before that his seizure activity increases when sleep spindles form during his EEG. Scott has turned in early this evening in hopes of getting a good night's rest. Hopefully, tomorrow will be a seizure free day!