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Click here to e-mail Cherilyn C. (new e-mail address)

10 Feb., 1999

My name is Cherilyn, and I live in Shelley, Idaho, a small town near Idaho Falls. I was diagnosed with epilepsy when I was 13 years old. During lunch hour, I had two serious grand mal seizures in the junior high school library, which my parents were told had a 90% death rate. They were also told I had tested positive on a drug test -- it was actually from half of a cold tablet. I was out cold and couldn't speak up for myself; my parents were terrified.

Personally, I had only heard of epilepsy once before, in the sixth grade. My teacher read a book to the class called "What If They Knew?" In this book, a young girl went to live with her grandparents and hid her secret from all her new friends for as long as she possibly could. I, on the other hand, found out while I was in the hospital that everyone "knew." My music teacher, Mr. Gemar, had explained the situation to his afternoon classes, and at the band and choir concert that night, told the community what had happened. Then, because of the death rate, he had dedicated a song to me called "Rhythm of Life."

That was hard for me at first, and yet it made things easier in the long run. Mr. Gemar had let people know that it wasn't something to joke about. And because everyone knew about it before I did, really, there was no reason to keep it back.

After three days in the hospital, I went home and startedlooking up everything I could find about epilepsy. Icouldn't believe what i found. All of a sudden things started makingsense. The books were identifying things I'd been feeling all my life,but couldn't quite describe. I had felt sometimes like I was in themiddle of a fairy tale or a nursery rhyme, but couldn't put my finger onwhich one. I had asked my mother as a child why this was, but since Ihad started reading at the age of three and buried myself in books, shehad figured it was part of my imaginative side. What reason would shehave to link the fairy tales to the two fever seizures I had as a baby?"Go on, dear," she would say, encouragingly. Later it had felt likewhatever was going on was all from long ago, even though it couldn'thave ever happened before. I knew I was just imagining it. Just like Imust have been imagining that my arms started bouncing on the table inthe library that day. But the books I was finally researching in, and afriend whose father had epilepsy, all matched up to what I had felt allalong. All of a sudden I was "a normal abnormal!"

I still have to admit it was a hard day when the doctor confirmed the diagnosis. I couldn't help but cry.

With everyone knowing from the start what had happened, I never felt it necessary to hide it. In the long run, I realized I would rather let people be aware of what was appropriate in a given situation than catch them off-guard and end up with us all feeling stupid. And I have always had a willingness to share my situation with others if it could help them.

Within a year, I had already been put on three medications in various doses and mixtures. Over the years there have been at least eight that I can think of off the top of my head. Brain surgery has been contemplated at least three times, and eliminated. The doctor who was over my VNS implant informed me that after three meds didn't work, the likelihood of finding one that did was minuscule -- why has it taken so many years for someone to state that? And since I have focal and generalized seizures, brain surgery could be dangerous and would only be able to solve part of my problem.

Over the years, my seizures have varied. After they showed themselves, they never went away. I have had grand mals, petit mals, partials and blackouts. The more serious they were, the further apart the tended to be -- in the beginning, at least.

When medications have been tried, at first I have had what one doctor calls "honeymoon" periods. They work for a while, then fade off. Once, about a year and a half ago, the honeymoon lasted three months! What bliss!!! But it always goes away eventually. And I go back to having as many as four seizures a day, with no apparent causes that I can pinpoint.

Nonetheless, in the nearly 14 years since diagnosis, I have not sat around. I graduated from junior college with associate degrees in elementary and special education, moving on to study deaf education at a state university. I also left school for eighteen months, serving a full-time religious mission away from home. Upon my return I spent one semester going to school full-time, working as a grocery checker full-time, tutoring part-time, supervising the musical department in my church, and planning my wedding, all the while holding down a 3.5 GPA. Eventually I decided that education would not be the field I would be best in, but this choice was certainly not because of medical limitations! Right now, still married and working continually at the grocery store for over four years now, I am training through a home-study program in medical transcription, a field that will allow me to have a strong career right in my own home.

I remember reading about once how it was standard only a century ago for people with epilepsy to be committed to institutions or otherwise held away, restrained from marrying and kept medically from having children, restricted from education and occupations. I realized that if I had to have this in my life, I was glad it could be in this day and age, when all the doors were open to me, and I could do anything I decided to put myself to.

If there is anything I want to tell everybody, it is what I heard once years ago: "Your problem is never your problem. Your problem is your attitude towards your problem." Whether it is hair that is always frizzy, a broken bike wheel, no drivers license, freckles, multiple sclerosis, or epilepsy, your problem is only a problem if you make it one. I have been constantly amazed at how my epilepsy has helped me understand a wide variety of things in all kinds of situations. I have come to look on it as an asset in many ways.

I related strongly to David Naess's story of trying to decide if the VNS would be right -- it took a long time to determine this, and to convince the insurance company that it had moved past the "experimental" phase in the medical field and was worthy of coverage. Nonetheless, I received the implant on Tuesday, January 19, 1999, at the University of Utah in Salt Lake City, and am in process of having it programmed to see if it can work for me. I am very hopeful, although I realize that it is not for everyone. I hope to keep you updated.

15 Feb., 1999

As I said, surgery was on January 19. At U of U, among other hospitalsin the country, the surgeons have begun implanting the device throughthe underarm instead of through the chest directly, for cosmeticreasons. The VNS is under enough muscle tissue that I cannot locate thewire, and the protrusion in my chest is small enough that my localdoctor had to ask where to put the wand to reprogram the device.

The first programming was done on January 20, beginning with .25milliamps for 30 seconds at 5 minute intervals. I saw my doctor in I.F.on January 29, and he increased it to .50, then .75 milliamps, at 3minute intervals. I am scheduled to return on February 19 for anotherincrease. The choking sensation was considerably strong for the first36 hours or so the last time, so I scheduled for some time off again atthe store after this one.

I have found the whole thing rather amusing as I have gone back towork. I am carrying my magnet in a leather "medicine bag"-style pouch(guess that's what it really is in this case, eh?) around my neck that Ituck behind my apron so that it is easily accessible for me and for myco-workers should it ever be necessary. As I lean across the edge of acart to get the groceries, or as I pull a can across the grocery scannerin front of me, I find the magnet pulling with them. I have to laugh at that.

As my voice comes and goes, the customers I have become friends withover the years will ask if I have a cold or the flu bug that's passingaround and I will tell them various levels of the story. Most often Ijust stay that my voice is programmed by a computer and will come backwithin thirty seconds or so -- see? Here it is! Everyone is reallygood with me about it, and supportive of whatever I share with them.

The really good news is, I haven't had any seizures since January 27. Iam keeping in mind, though, that there have been 3-week spots fairlyrecently on the medications I am on, so I cannot say whether this isbecause of them or the VNS. In a few months, though, after the strengthof the device is up a bit more, we will start weaning me down from themedications, and start to be sure one way or the other.

15 March, 1999

Was it a hoax to have written telling you that I hadn't had anyseizures? Or was it just that a doctor's appointment was coming up?One way or the other, I had some six comparatively serious seizures infour days just before that appointment, as usual for no real reason --certainly not for six!

We put the device up to 1.25 milliamps, still with a 30 second/3 minuteratio in time, and once again I went for about 2 1/2 weeks with noseizures. It has started to taper again -- I've had three in the lastweek -- but I have noticed a decided difference in the length of theseizures and particularly the duration of the recovery period. It hasgone from as long as ten or fifteen minutes to as many seconds! Thatdoes indeed please me!

Some problems have come up regarding scheduling doctor's appointments,but I hope that meeting with him again can find the right point to notonly have briefer seizures, but fewer again.

26 April, 1999

I have noticed some interesting things in the last few weeks aboutmyseizures. They have been coming in waves, just as before, morefrequently at some times than others. I go for two or three weekswithout a seizure at one point, then have spurts of two or three inoneweek. But recently the seizures have been significantly smaller,andthe "recovery time," per se, afterward has been usually only a fewseconds instead of five to fifteen minutes. Hurray!

Also, the seizures have almost always been first thing in themorning,right before I am about to wake up, or occasionally something like 4or5 a.m. There have only been two or three exceptions to this. Ontheone hand, I am not alert enough to grab and use the magnet forthese,but on the other, they are not hard to deal with at that time ofday,especially when they are so much smaller than they have been in thepast.

When I visited my doctor today, he told me that technologicaldevelopments that are pending may include the ability to program theVNSto work certain ways at various times of the day. That could behelpfulin my case, but I won't hold my breath to see when it happens. Fornow,the device has been reprogrammed to 1.5 mAmps for 30 seconds at 1.8min(108 seconds) intervals.

June 21, 1999:

My seizures are continuing to become smaller although not very much less frequent. One weekend of 10 seizures within about 48 hours did not excite me. On June 7, my VNS was reprogrammed on timing alone. It is now on for 14 seconds and off for 30. My voice is finally beginning to adapt more with this.

September 8, 1999:

On July 26 it was the current that was reprogrammed, to 1.75 mAmps. My seizures have remained smaller with few exceptions, and I have gone for as long as four weeks without a seizure twice now. I am also able to sing again -- not solo, and not with as wide a range, but sing nonetheless. That makes me very happy!

January 24, 2001:

Since this time I have not changed my levels on the device much, and my seizures have generally remained smaller and less frequent. This was my goal originally, so I am pleased. I am presently on Keppra, which has also helped reduce the seizures.

Last spring my husband completed graduate school and we have moved to Boise. I am excited by the broader opportunities here; I have easier access to a wider variety of activities than in the little farmtown we both grew up in and spent so much time in up to this point. I transferred to another grocery store but have completed my medical transcription training and keep that option in mind.

  February 6, 2001:

I just received my new magnets yesterday. They are incredibly handy. The magnets themselves are smaller than the bar magnets I had before, but just as strong if not more so. They also do not stand out. They are quite chic, actually. They have a black plastic casing, with a velcro wristband for the watch and a further plastic clasp for the pager. The sticker on the magnet, a blue star spinning out, is recognizably Cyberonics if you know what you are looking for but would mean nothing to anyone else. While the watch style is probably most accessible, I will use the pager more than the watch because I am always at a computer system. I like them both a lot.

July 2, 2001

I haven't been improving much more than before, but I haven't been getting any worse, either.

More to come