Notable individuals with epilepsy...

If you have epilepsy, dont feel alone, besides the fact that there are approximately 2.7 million Americans suffering from epilepsy, several websites list a number of very "famous" people that suffer from the disease...
Here are a few of my favorites:
Hugo Weaving, Danny Glover, Leonardo da Vinci, Fredric Handel, Sir Isaac Newton, Martin Luther, Edgar Allen Poe, Socrates, Pythagoras, Julius Caesar, St. Paul

There are not so many contempoary famous people are admitting that they have epilepsy. The disease still carries a stigma that has been carried forward for centuries. People do not want to disclose that they suffer from epilepsy because they are concerned as to how it might affect their social standing and job opportunities... which it may very well do. Besides, considering Tom Cruise's recent comments about depression, he would probably dismiss the disease with comments about his peers indicating that they should just take some vitamins and excercise more. Not bad advice, but probably won't help much if your epilepsy is caused by brain damage.

For more people with epilepsy, check out these sites:
http://www.epilepsy.com/epilepsy/famous.html
http://www.epilepsy.com/epilepsy/famous_writers.html
http://www.epilepsy.com/epilepsy/famous_leaders.html
http://www.epilepsy.com/epilepsy/famous_religious.html
http://www.epilepsy.com/epilepsy/famous_painters.html
http://www.epilepsy.com/epilepsy/famous_composers.html
http://www.epilepsy.com/epilepsy/famous_contemporary.html
http://www.enlighten.org.uk/famous_people/famous_people.html
http://www.epilepsyfoundation.org/local/michigan/famouspeople.cfm
http://www.geocities.com/epilepsy911/famouspeoplewithepilepsy.html

Google's Categories on Epilepsy

This page lists all the registered websites that Google has on epilepsy. Not exactly complete, but it does have some interesting websites of interest.

EEG Graph

When you get an E.E.G., the resulting data is displayed as "squiggly" lines on paper, with each line representing an area of the head from which electrical activity is monitored. In cases where there is detectable seizure activity, it shows up as big abnormal "spikes." Obviously you need specific training in order to read and interpret the EEG, but a layman can get a bit of an inkling that something may be a bit off when viewing the readout. Below is a six second section of my most recent (non ambulatory) EEG. The red line marks the start of the abnormal "spikes" in electricity from the brain.

Epilepsy Institute of North Carolina

My neurologist, Christine Dean, M.D., is the co-founder and director of the Epilepsy Institue of North Carolina. This not-for-profit institue is committed to serving patients of all means with the most suitable treatment available.

Dr. Dean does a great job educating me about my epilepsy. She explains why it occurs, how different drugs may affect the seizure activity, and what are the side-effects of those drugs. If you have epilepsy and are looking for a Neurologist in the triad region of North Carolina, I would highly recomend Dr. Dean.

Merry Christmas!!!

To any of you that happen to be perusing this blog tonight, I wish you a very Merry Christmas.

Christa and I are relaxing on the couch with our dog, Otto, and enjoying the evening watching a twelve hour "marathon" of Law and Order. I have managed to go the whole day today without having noticable seizure activity. Nor has Otto seemed to notice any seizure activity (not that he has before). Some dogs are able to detect this!!! In fact, some trainers claim to be able to train dogs to do this, although all respectable sources indicate that it is not a trainable skill, but a trait which some dogs posses from birth. Currently researchers have not determined how a dog might do this. Some of the scientists suspect a smell, as dogs have a far better sense of smell than humans.

As for whether one might consider spending thousands on a dog trained to recognize seizures you may want to wait for more scientific evidence rather than anecdotal evidence. Dogs can still play a valuable part in helping their masters during a seizure event. Most of them will protect their master if they are unable to respond and notify others of the situation. Even my little sixteen pound westie will hardly let anyone near me the few times I have had a grand mal seizure when around him.

Simple Partial Seizures

The Epilepsy Foundation has a very clear description of Simple Partial Seizures

Some of the Sensations listed there are similar to the sensations I feel when having a Simple Partial Seizure (bolded):

Sensations: All five senses -- touch, hearing, taste, smell, and sight -- are controlled by various areas of the brain.

Simple partial seizures in these areas can produce odd sensations such as a sense of a breeze on the skin; unusual hissing, buzzing or ringing sounds; voices that are not really there; unpleasant tastes; strange smells (also usually unpleasant); and, perhaps most upsetting of all, distortions in the way things look.

For example, a room may suddenly seem narrower, or wider, than it really is. Objects may seem to move closer or get farther away. Part of the body may appear to change in size or shape.

If the area of the brain involved with memory is affected, there may be disturbing visions of people and places from the past.

Sudden nausea or an odd, rising feeling in the stomach is quite common. Stomach pain also may, in some cases, be caused by simple partial seizures.

Episodes of sudden sweating, flushing, becoming pale, or having the sensation of gooseflesh are also possible.

Some people even report having out of body experiences during this type of seizure. Time may seem distorted as well.

In many ways, our usual, comfortable sense of familiar things and places may be disrupted by a simple partial seizure.

Well-known places may suddenly look unfamiliar. On the other hand, new places and events may seem familiar or as if they've happened before, a feeling called déjà vu.

Simple partial seizures can also produce sudden, uncontrolled bursts of laughter or crying.

VNS Cafe - The latest news in VNS Therapy and depression treatment

The VNS Cafe is an interesting blog that focues on the use of VNS for depression. The blog author wrote a book on the subject and currently has a device implated in 2001 for depression treatment.

The book is: Out of the Black Hole I may pick up a copy of it...

My seizures...

I currently experience two types of seizure events (they have changed slightly over the years). I have Gran Mal / Tonic-Clonic seizures without any aurora before them. I simply loose consciousness and fall to the floor. My family says that before I fall, I usually have a strange look about me and many times look up and to the left... Especially if their are bright lights around.

The other type I have now is a very short incident where my concentration is stopped for a second and I am unable to respond (ug. Just had one now). They last only a fraction of a second and tend to occur in situations where I am concentrating on a task (such as writing or cooking or reading). They tend to have three separate types of feelings: a feeling like a "wave" of thought/consciousness that rushes through your head; a feeling like time stops for just a fraction of a second, but that you have consciousness during that time; and a feeling like you are frozen in time, but the world still moves. They are very odd experiences and describing them with analogies in English is difficult at best.

Oddly enough, the experience I have from these smaller seizure events seems to change from one medicine to another. Before I got on Lamictal, I was on Tegretol. Near the end of my treatment with that drug, I had incidents where I would have multiple (2 to 20) small seizures within a short period of time. Each one would completely erase whatever short-term memory/thought in which I was currently engaged. Each one would have about 5 to 15 seconds where I could think again, but I would have to restart the thought process for the activity. Something like this:

ZAP! Oh. I had a seizure. I should get some Sprite and medicine from the ZAP! Ok. I had a seizure. I need to get something. I know - medicine. In my car. ZAP! Ok. I am in the parking lot. Why? Oh, to get some medicine. Don't I have some in the office? ZAP! Ok. Seizure again. Need medicine. Probably in my car. Here it is. ZAP! What am I doing. Oh, got medicine. Need something to drink. From the breakroom. ZAP! Why am I in the hall? Not sure. I should go back to my desk. ZAP! Wait, I had another seizure. I need sprite to take the medicine in my hand. Go to breakroom now. Got Sprite. Take medicine. ZAP! Ug, seizure. Appears I took my medicine. Go back to office. Drink more Sprite. ZAP! What am I doing? Oh, sit down. Rest a second... Feeling better...

Much more fun to write than to experience. I have never spoken with anyone that has had seizures like these. Not sure if it is common at all.

Side effects of Keppra and Lamictal

Medicine effects each person's body in a different way, so one individuals experience with a drug can be completely different from another's. The combination of Keppra (750 mg / 2x per day) and Lamictal (200 mg / 2x per day) has a very stimulating effect for me. Once I take the medicines, I am unable to rest for about 4 to 5 hours. More than not resting, they make me somewhat figity. I have to be doing something and something that involves me actively participating. Watching TV won't do it. So, when I get home, I try to take it as soon as possible after I eat or I will be up till late at night working or gaming or cleaning... Whatever.

This works pretty well in the mornings, as it keeps me going while I am at work, but if I did not get much sleep the night before due to taking my meds late, I will be very sleepy once the drugs wear off in the afternoon.

Compared to side effects from some of the other drugs, Lamictal and Keppra are quite benign. Hopefully I can find something equally benign that will prevent the Gran Mal seizures I have.

Consultation with Surgeon

I had a consultation with a surgeon, Dr. William Brown, a Neurosurgeon that was recomended by my Neurologist. Christa and I asked him a lot of questions about his practice and experience. Even under intense scrutiny, he appeared to be quite genuine and competent. We were impressed by his knowledge of the VNS surgery and his description of the processes involved. Having studied the VNS Surgeon's Manual, we were able to ask him pointed and detailed queries regarding the surgery methods and techniques and he answered all of them correctly.

One of the things that most impressed us was that he was in no way "pushing" the product. At the end of the consult he told us, you don't have to make a decision now or schedule anything now. You don't even have to call back, but if you do decide to have the surgery, just call us and we will schedule it. This took off a lot of pressure of having to make a decision then and re-affirmed our assement that he was genuine in his description of the side effects and the effacacy of the device.

Complications of VNS for epilepsy in children

Abstract of a study: ... follow the link...
OBJECT: The aim of this study was to define better the incidence of surgical complications and untoward side effects of chronic vagus nerve stimulation (VNS) in a population of children with medically refractory epilepsy.
CONCLUSIONS: Vagus nerve stimulation remains a viable option for improving seizure control in difficult to treat pediatric patients with epilepsy. Surgical complications such as hardware failure (2.7%) or deep infection (3.5%) occurred, resulting in device removal or revision. Occasional stimulation-induced symptoms such as hoarseness, dysphagia, or torticollis may be expected (5.4%).

Surgical Proceedures

"... The platysma muscle is divided in the direction of its fibers and the deep cervical fascia is opened to identify the sternocleidomastoid muscle..."
This section of the Cleveland Clinic NeuroscienceCenter describes the VNS surgery procedures necessary to implant the device. Some of it is quite complex and other descriptions quite graphic. In any case, very insightful information about the surgery.

Vagal Nerve description and pics

I am planning to meet with a surgen this Wednesday regarding a possible surgery to implant a device that stimulates the Vagal nerve. The treatment is fairly new... almost 8 years since approval by FDA. This link to the Cleveland Clinic provides some information not found on the manufacturer's website.

Analysis of Ambulatory E.E.G.

My Dr. called me this evening to give me her analysis of my ambulatory E.E.G. that I had done several weeks ago. She said that it indicated that I have seizure activity in my brain pretty much constanly, but increase in activity during times when I was working on my computer (what luck), doing household chores (dishes & stuff), when I get sleepy or tired, and er... something else ... can't recall (go figure). But the main thing was that this electrical activity is occuring all the time and appears to build up over time, followed by release in a seizure event. The strange thing is that the electrodes do not pick up any activity during those events. My doctor said that this could be that the activity is deeper in the brain and that the signals do not reach the surface.
What does this mean? Well, pretty much, the electrical activity in my brain will continue and "overflow" into seizure events without warning. Unfortunately, the drugs are not fully stopping the seizures when the electrical activity builds up to the point of "overflow".
My doctor has recomended that I undergo surger to implant the Vagus Nerver Stimulation (VNS) device. I have an appointment next week where I will meet the recomended surgen.
I'll keep you up to date as I learn more..

Electrodes removed

After over 72 hours of wearing the ambulatory E.E.G. device, I am pretty tired of it. Although it is not heavy, it pulls on your head so many times that your head gets a bit sore, and your head really starts to itch from the glue. After 72 hours with no shower, I think my wife is ready to get this thing off my skull as well... all-in-all, it was not so bad. Just a bit un-confortable. If you have not had one before and are going to, don't worry, it is not as bad as you might think.
Once the EEG tech removed the electrodes by melting the glue with acetone(really stinky stuff - same as nail polish remover), I was still left with a lot of glue stuck to my skull, but at least I can scratch it!!!

Called in to work...

My boss called me in to work today to fix a computer. I had to go, so I slapped (er, carefully placed) a hat over the wrapped electrodes and Christa (my wife) took me in to the office. I ran into a few people, it was not that embarassing, but I did feel a bit awkward.
My scalp is really starting to itch... but I can't scratch... :(

Ambulatory E.E.G.

Today I got hooked up for an Ambulatory E.E.G. test. They take a pretty serious glue/iron-hard-epoxy-stuff and attach your standard set of electrodes to the top of your head. The leads are attached to a small WalkMan sized recorder. It runs on a couple AA batteries and contains a micro-drive that records up to 72 hours worth of electrical activty coming off the top (or the sides) of your head. I will be wearing this for the next few days...

MRI

Concerned that the increased seizure activity I was experiencing could be related to the Cavernous Angioma that I had surgery upon earlier in life, I scheduled an MRI to determine if it had grown or there was any other tissues that might be causing the problem. The MRI turned up nothing obvious that might be causing the increased seizure activity. This was frusterating as I was hoping that the test would turn up something "fixable"... a confusing wish... not that I want a brain tumor or strange tissue causing problems in my head, but it would be nice to have something concrete and identifiable that was causing my epilepsy.
The best thing about the whole experience was that I did get to keep the images generated by the MRI... as it turns out, they all go directly to a computer. I politely asked for them and the techs were able to save them to disk for me. I highly recomend this if you have to get one. The images are facinating... plus, you can prove to your friends that you have a brain!!!

VNS Presentation

Christa and I went to Dr. Dean's office to see a presentation on the VNS Therapy. We got to meet several people who currently had the VNS devices implanted. The effacacy of the device varied between the three people. A man, whose seizures most matched mine, was now completely seizure free. A woman, whose seizures were fairly similar to mine, now had a reduced number. Another woman, whose seizures did not match mine, did not have much improvement from the device, although she did indicate that it helped with recovery after a seizure. These results are consistant with the clinical trials conducted for FDA approval of the devices.

Although each of them had different experiences with the device, all of them indicated that they would stay on the treatment and would have a new device implaned once the old one ran out of battery power.

The devices are quite small. and you could not see the wires in their necks. The man had the oldest model of the device and it protruded quite far from his chest. The newer models are much smaller and are less visible. The Model 102 is 5.5 centimeters in diameter and 7 millimeters thick; it weighs about 25 grams.

After the presentation, I told Dr. Dean that I would like to have an MRI and Ambulatory E.E.G. before I decided on whether to get such an implant. She scheduled them, I will be having them in the next few days.

Birthday seizure

I had a seizure last night on my 32nd birthday. It happened unexpectedly while waiting at a Japanese restaurant for some chicken and shrimp. I had taken all my medicine. Fortunately for me, Christa saw me about to go into the grand mal seizure and was able to lower me to the floor before I crashed to it. I am so very lucky to have her in my life.

This one really got to me because I had gotten plenty of sleep, was not stressed out, had taken my medicine regularly, and had not had many of the smaller seizures that day. I called Dr. Dean and requested an appointment. The nurse recommended that I come in to see a presentation that they were doing on a "new" treatment called VNS.

Meds...

Over the last 20 years I have taken just about every anti-epileptic medicine avaiable. Useually, they will work from anywhere between 1-6 years before becoming ineffective. All the medications have some side-effects... of which some are quite unpleasant. Currently I am taking Lamictal and Keppra. In the past I have taken: Phenobarbitol, Tegretol, Dilantin, Depakote, Trileptal, and several others of which I cannot remember (go figure). All said, I am quite gratefull to the skilled chemists and doctors that work for the parmacutical industry... without them, my quality of life would be quite low.