Friday, March 31, 2006

Settings Changed

I took the day off work as I was pretty beat up from falling last night. Both arms got bruised and my head got pretty smashed up. During the morning and afternoon I had about 6 more simple partial seizures. I made and appointment to see Dr. Dean, and after discussing with her various options, I decided to have my VNS turned back down to the setting it was at 4 weeks ago. Now it is at .75 mAmps of current, 1.8 Off time, .5 on time, 130 phase pulse. Although that is considered low, it seemed to be working fairly well a few weeks ago. We shall see...

Thursday, March 30, 2006

Second seizure in less than a week...

Please say a little prayer for Scott as you doze off to sleep tonight. He had a grand mal seizure this evening while at work. He banged himself up pretty badly - bloody lip, bruised arm and elbow, huge knot on his forehead. His co-workers stated that the seizure lasted several minutes but he did not stop breathing. (Thank God for that small miracle!!) Scott is currently resting as he is very tired. Tomorrow we will head back to the Epilepsy Institute to have his VNS settings checked (and lowered.) I'll post more tomorrow to let everyone know how Scott is doing.

Monday, March 27, 2006

The Buzz is Back!

I got my VNS turned up on Friday to a current of 1.0 mAmp. I can feel it buzzing quite clearly when it pulses. It is not so bad that I notice it all the time. Just when I am not concentrating on something else. Like the other times when it has been adjusted, I'm sure I will get used to this as well.

I'm still taking my Lamictal and Keppra. Both which keep me pretty wired. Last night I did not take my meds until around 8... I did not get to sleep till nearly 1 am today. This afternoon I took them around 4:30. I am finally feeling sleepy. I'll try to post something of substance tommorow. G'night.

Friday, March 24, 2006

Google Finance - CYBX

I have been getting a lot of hits from the Google Finance website. Evidently the Google search engine believes that this site is relavant to investors. My thought is that the Google search engine is biased toward it's own blog hosting site: Blogspot.

In any case, If you are here hoping to get the scoop on the VNS device, you may be in luck. I have a ton of posts about the surgery and effacacy of the device... based solely on my own experince. So far, my experince has been fairly positive, and the side-effects are relatively low compared to most AEDs. Being that there are a limited number of Anti-Epileptic Drugs, having one more option is nice.

Regardless of what many patients may think about Cyberonics, I have to give them a lot of credit for investing many millions of dollars in an attempt to help those with elpilepsy, which is a relativly very small market for a medical product.

As for investing, if the VNS works well enough that I can continue working, I'll probably buy some stock.

Another seizure...

I had another seizure today. The intensity was not as bad as a "typical" tonic-clonic seizure. Christa says that I did not convulse much, but moved my arms and legs some and could not respond to her. She said it did not last longer than a minute.

All of this is good... if I would have had a Gran-Mal / Tonic-Clonic generilized seizure, but... if it was increase in intensity of a Simple-Partial seizure, that is not so good.

After the event, I went back to see my neurologist and had Nurse Cindy adjust my VNS setting to increase the "off period" of the device. I also had her increase the current to 1 mAmp. They also did an EEG, but did not find anything especially different from past EEGs.

Support Group & Late Night Meta-Blogging

Lol... no, not a support group for meta-blogging! I would really like to change the look of the blog, split it into 3 frames, get rid of the green that is starting to make me sick. That being said, I have no idea when I might get the time to work on it. After my last trip to get my VNS adjusted at the Epilepsy Institue, Christa and I decided that we should start a local support group for people with epilepsy and their caretakers. So we are going to get started on that. In addition, I am working on some ideas for manufacturing some nifty widgets. While at the same time, I am writing a text on my personal philosopy. Great... now my sinuses are acting up. I have to get some sleep. Good night and good luck.

Thursday, March 23, 2006

Works? Maybe...

A few minutes after I scanned it, it seemed as if my head might be a bit "clearer", so maybe it helped. It is now about 50 minutes post scan and I have not had any partial seizures even though I have been working intently on my computer; writing emails, running reports, and now blogging during lunch.

VNS Magnet v. Partial Seizures

While working, I had what may have been a small partial seizure. Sometimes I get more than one of these at a time, so I used my trusty little magnet. We shall see if it helps.

Wednesday, March 22, 2006

VNS Magnet Expose

I have an almost insatiable curiosity, so once I got ahold of a spare Cyberonics VNS Magnet, I had to know what was in it. Cracking open the case was a bit difficult. I used a hack saw, utility knife, screwdriver, plyers, and a Vise Grip. Once I got it open, I found out why they encase it in plastic. It is a very strong magnet. Strong enough that you could pinch your finger or other extremities between the magnet and steel. If anyone has questions about the magnet, let me know and I would be glad to post about it.

Tuesday, March 21, 2006

Another one...

Had one more partial seizure today. Same type thing as before. Had it while working on a document. Well, that is only two in over a week. Not so bad.

A little flicker?

I just had a partial seizure while working at my computer. One of the ones where my concentration is momentarily broken and I experience a strange halucionary feeling of time distortion/stopping. This is the first one I have had in over a week.

Sunday, March 19, 2006

MSN loves Living With Epilepsy

Every day I check the number of hits to this website, what part of the world from which the hits originate, and what searches are used. MSN Search site puts this blog in the top 10 list for just about any search that includes the words epilepsy, gran-mal seizures, or VNS. Although this is very flattering, I am concerned that people are not getting the information they desire.

For any of you searching for some detailed information about epilepsy, your first stop should always be the Epilepsy Foundation. Visit there first and if you want some more personal and obsure information about epilepsy and VNS, spend a bunch of time here on Living With Epilepsy.

Friday, March 17, 2006

The VNS Experience

I just got back from the Epilepsy Institute. Today was my appointment to go in to have my VNS adjusted. As I just had my VNS implanted in January, I am getting frequent adjustments to the current and frequency of the pulse generator. So today I was going to have the current upped to 1.0 mAmp, but it was causing a strong feeling of constriction in the throat along with a buzzing in the thoat like a large pack of honey bees. Nurse Cindy, in her infinite wisdom, instead suggested that I have the frequency of the pulse increased. She moved it to 30 seconds on every 1 minute 10 seconds. So the buzzing is at a tolerable level. I hardly notice it.

While at the Epilepsy Institute, Christa and I spoke with a few patients and their caretakers. It was nice to be able to compare experiences with them. Christa was able to identify with a mother and grandmother of a young patient and I was able to relate to the experinces of another lady that had a VNS. I gave them the link to my blog. (if any of you are reading this, I enjoyed speaking with you and thanks for visiting.)

Happy Saint Patricks Day!

I hope you all are having a happy Saint Patricks Day! As my website is currently a disturbing color of green, I don't think that I will have to "dress it up" to be festive! For anyone not familiar with the legend, evidently Saint Patrick, among other things, drove the snakes from Ireland. As for the leprechans, rainbows, shamrocks, and pots of gold, check the whole thing out on Wikipedia.

Now, quit reading my blog on epilepsy, go get some green beer, get in the spirit, and be Irish for a day!

Visitors from Planet Earth

Every now and then I get visitors from NASA (National Aeronautics and Space Association). I would just like to go on record to say that you all are my heros! Thanks for coming out!

Thursday, March 16, 2006

Anticipation of buzzing...

Tommorow I get my VNS turned up to 1.0 mAmp. I suspect that it will probably drive me crazy for a few days. On the plus side, I haven't had a seizure all week long. Maybe this VNS thing is starting to work. Maybe just placebo... but for brain conditions, I'm not sure there is a difference. If the objective is to stop your brain from malfunctioning, and you are able to "trick" it by taking a substance that has no know effets, well, your brain must have figured out a way around the problem. Hence, placebo succedes! But, I digress. One mAmp seems like a lot of electrictiy... even though the VNS will push through many times more than that. I plan to go ahead and get it moved up to 1.0, then stay at that level for 3 months... or move it lower if it bothers me. The VNS physicians manual says that there was no coorelation to the amount of electricty and the results, so why push it too far. I don't know... I will keep you posted on the results.

Monday, March 13, 2006

New Feature: Cyborg of the Month!

Now that I have the VNS implant, I am officialy a cyborg, so I though I might do a article each month about other Cyborgs - in fiction and "real life". And maybe I might do one of each... we shall see.

What is a cyborg? Wikipedia defines it as:
A term used to designate an organism which is a mixture of organic and mechanical (synthetic) parts. Generally, the aim is to add to or enhance the abilities of an organism by using technology.

Using this definition, anything not organic that interfaces with the body might get one the classification of cyborg. This could include a hip replacement, heart stint, glass eye, false teeth, or hearing aid. But, when the second part of the definition is applied, "enhance the abilities of an organism by using technology," it insinuates that the technology should make one better than normal as opposed to simply replacing broken organic parts.

The Vagus Nerve Stimulator could be considered to both fix broken parts and enhance the abilities of an organism. The goal of the manufacturer is to help people with medical conditions: Epilepsy and Clinical Depression. But a "side effect" tha many people experience is enhanced memory and mood. This might be considered enhancement. So, although and argument could be made against it, I am going to go ahead and call myself a cyborg.

As for the Cyborg of the Month: There are numerous protagonist and antagonist cyborgs in literature and film. I'll be posting my first one about the character Case from the novel Neuromancer.

Sunday, March 12, 2006

Nothing all Weekend...

This weekend the weather was beautiful... low of 67 high of 78... needless to say, I did not spend a whole lot of time thinking about what to post on this blog, but instead did a bit of spring cleaning and napping. On Friday, I will be getting my VNS turned up... again. I think it may be helping (wishful thinking?) as I have not had that many seizures over the last two weeks.

Friday, March 10, 2006

Mind Hacks

To fill in the gaps in my blog and provide some quality links, I go surfing for websites that have relavant information on epilepsy. I was especially pleased to find this website: Mind Hacks.

It focuses on neuroscience and psychology, and includes a number of entries about epilepsy. To save some time, I'm going to wholesale repost their entry (thanks Vaughan):

Excellent All in the Mind on epilepsy:
Last week's edition of ABC Radio National's All in the Mind was an excellent programme on the science, experience and treatment of epilepsy.

The programme talks to several neurologists about what causes the curious condition and how it is being treated.

Also featured on the programmme is Gail Williams, a 16 year old girl who had epilepsy since the age of 4, an experience which included seeing unusual hallucinations before she lost consciousness.

Gail's epilepsy was particularly serious, and was eventually given brain surgery which has since stopped her seizures. She describes the experience of the surgery and life before and after epilepsy.

This is one of the most comprehensive and engaging programmes I've yet heard on the condition. Half an hour well spent.

mp3 or realaudio of programme.
Link to transcript.
Link to Epilepsy Action information pages.

Thursday, March 09, 2006


One of the hardest things about living with epilepsy is the fear of seizures. This is so hard for your caretakers, family, and friends... The last thing they want to happen is have their loved one falling to the floor and half-dying from a gran-mal seizure. More often than not, when I have a generalized tonic-clonic seizure I end up smashing my head into something very hard or sharp and end up with bruises, cuts, and blood on the floor. Probably the only good thing about it is that you are unconcious before you hit. Evidently it is much worse for those around you... and very scary.

For me, the fear of having a seizure is very real, and one that I have to deal with daily. What if I fall and die today? If I follow the "what if" line of reasoning too long, it can be overwhelming... What if I have a seizure while walking accross the street? What if I have a seizure while wallking down a flight of stairs? What will happen if I have a seizure in the middle of a presentation to 50 of my co-workers? Carried too far, I would simply have to stay in my bed and never leave. My method: just avoid thinking about it altogether. Which makes me bold and seemingly dismissive of the worries of my family and friends.

It seems to really bother them that I don't appear to care about what happens to me... I do care though, it is just that taking too much interest in my self preservation would paralize me with fear. I'm no wise man, but all this worrying cant be good... in the words of Master Yoda: "Fear is the way to the Dark Side. Fear leads to anger. Anger leads to hate. Hate leads to suffering."

How can you maintain a healthy level of caution about your life without becoming overly fearful... How can you avoid this fear from becoming a burden on your soul? I don't know...

Wednesday, March 08, 2006

Epilepsy Information Page: National Institute of Neurological Disorders and Stroke (NINDS)

The National Institue of Health has a division that focuses on epilepsy and other neurological disorders. Their Epilepsy Information Page contains a whole lot of information about the disorder. There are also links to research websites and facilities.

Tuesday, March 07, 2006

Side effects...

It has been about two weeks since my last adjustment to my VNS. They turned it up to .75 mAmps. I am almost aclimated to the increased buzzing sensation. Although I still cough a bit, it is not so bad. No noticable decrease in the number of simple-partial seizures yet. This is pretty typical according to the Cyberonics literature.

Friday, March 03, 2006


Steri-Strips (Steristrips) are a nifty skin-closure product produced by the inovative 3M company. They have been comonly used to hold incisions together after surgery for many years now. Interestingly enough, there is not a lot of information on the web about the product. Evidently, the manufacturer and doctors assume that everyone knows exactly how to deal with the strips after surgery. Not quite so cut and dry. My surgen, Dr. Brown, gave me a paper indicating that the strips should come off after about 7 days. That was it.

I went to pull them off, but could not get them to pull away from my skin. I called the surgen, but got useless instructions about them - "they can come off in 7 days". So I went searching on the internet... not much usefull there either. So... I'm going to post my best recomendation, based on my experience, on how to deal with removing the strips:

1. Don't try to remove them until the time when your doctor says that you can, (3M recomends 7 - 14 days) and when you can get your wound wet.
2. Moisten the strips with warm water.
3. Pull carfully at the edges. Odds are, that you wont be able to pull very far.
4. Stop, take a scisor and cut off whatever part of the strips that are loose.
5. Wait till next day.
6. Repeat steps 2 through 5 until you have removed the strips entirely.
7. You will probably be left with some of the 3M glue stuff stuck to your skin. If so, you can remove the glue carefully with a cue-tip swab & rubbing alcohol.
8. The skin around the incision was still sore when I was trying to remove the glue, so I took several days to get it all off.

To anyone trying to remove Steri-Strips from their wound, take your time and don't let anyone try to pull them off for you!

Thursday, March 02, 2006

Seizure-Alert Dogs--Just the Facts, Hold the Media Hype :

Bottom line: This article on Seizure Alert Dogs is one of the best I have read. If you are at all interested in this, please take a look. The article is: Seizure-Alert Dogs--Just the Facts, Hold the Media Hype

Wednesday, March 01, 2006

Two simple-partial seizures

While sitting here in bed working on a few posts (1 2 3), I just had two small simple-partial seizures. Just little twitches, but I am going to close down the computer and go to bed now... Goodnight.

Kim is recovering from VNS surgery

A lady named Kim is blogging about her VNS surgery and experience with the device. She has posted a lot of pictures of the incisions and stitches. Starting from 48 hours back from surgery to about 2 weeks post surgery. Christa looked at them and said they looked just like mine. Bottom line, the cuts hurt, but it does get better.