A wonderfully, painfully honest piece of writing Sadi; thanks for writing it.

Christopher, hi... i've been meaning to be in touch with you anyway re: the other thing...

Thanks for reading this... i actually sent this in an email to a friend who suggested i make this an article, so i'm not sure how it reads, but i'm glad that you like it... It is honest. It's honest because, as i said, i wrote this in an email to a friend so had no guard up.

Tough times call for tough measures but as i say:

Pray for small mercies that they might pray for us... i always remember that quote.

thanks as ever, and let me get back to you re that other. not a problem. just been super busy.

eeks!

I read this piece, as I read all your pieces on epilepsy. Normally, I say nothing, but here I have to agree. Epilepsy has saved my ass more than once in my life, and in more than one way. So while it is a nerve disorder that can get in the way of a pleasure centered existence, and often has in the past, it has its positive ends too. In addition to saving my life at least three times, it forced me to learn how a brain operates, which is something that has led me to other insights in totally different parts in my life, and which has helped other people in ways that I would have never expected.

Apparently, you still suffer from seizures on a regular basis, which would explain the fear of status eptilepticus - both yours and your husband's. It is truly a shame that your husband cannot accept this part of you. My mother kept asking "why?" when I had them, as though the seizures were a punishment. My wife knows about it, and knows how important my meds are to me, but she has never seen a seizure in our marriage. But like you, I fear a seizure, and keep careful tabs on my state of mind and emotions, and on the air pressure, which seems to indicate to me possible seizures.

You are always in my prayers.

dear Admirer:

wow... this is a great comment and compliment... i thank you... very very much. To be clear, i have to be fair, it's not that my husband does not accept my epilepsy - he has and always will be there for me and has proven this time and again, but the trouble he has perhaps has more to do with feeling that it will "take me away" and this is a real fear and i don't blame him one bit for fearing this.

He does not not accept the fact of my having it... he knows all to well that i do have it and is very, very kind and takes good care of me, but that said, i think he does find it hard to deal with, as would any sane person i think. It can't be easy for anyone to live with someone who is chronically ill - and dare i say - it can't be easy to live with me, or especially, and maybe this applies to you, or maybe not, but definitely to me, the temporal lobe ictal me, which is often difficult and i can only imagine hard.

In truth, i don't remember too well, so i can only go on what i'm told, but do i believe i am difficult when i seize or am "ictal" - Yes. I do. I know myself all too well.

Epilepsy is hard for all involved, as you know. It's hard on the epileptic, i think most of all... it's very very hard on us. it's also very hard on those around us because they do not have the insight into it that we have and nor do they have to, or did they, have to make their peace with it the way we have had to.

We had to make our peace because we had no choice. They have a choice: they can make their peace or not: if not, then they can go.

My mother, like yours then, could not for many years accept the fact of my epilepsy. Sometimes, she still has trouble. She will ask how i am, but not want to really hear about the seizures, which is to say, that she does not want to really know how i am because seizures are part of how i am. Not just Who i am but How i am. Do you follow?

I've learned to just say "fine." This is my standard answer to most people.
"How are you, Sadi." (who has been seizing with tonic-clonics or complex partials and battling le Grand Mal for days but hey, the standard answer - "I'm fine."

This is the problem - you have to be "fine" because too many people don't really want to know how you are when they ask. They just say it as a kind of greeting and i accept that. It's normal. And more, i don't really feel like telling my medical history anyway, so feck 'em, ya know? (yes, feck)...

I think that epilepsy is both a gift and a bane. I think we must or we do just take the good with the bad. What choice anyway? Yes, i have what they call "intractable seizures" but even my own neurologists say that i "should not" be as "successful" as i am. Which is to say, that i should not have written this article, i should not be writing books, i should not be a functioning poet, i should not work, i should not do a lot of things and yet i do... I do because i can... Maybe there will come a day when i can't. Or maybe I can't but i do anyway. I don't know. I don't mean to say that anyone else is weak - because i don't think that for a second. I think i'm some kind of freak because my EEG and MRI all prove that i should not be competent and yet...

Do i feel it sometimes slipping? Yes, i do. It scares me a lot. A lot. Will i fight to the death? You bet. Absolutely.

In my dreams i try to outrun my epilepsy and in my dreams, as i wrote, i was saved. These days, not so... i am left all alone and these days, epilepy wins and i die (i guess that proves that if you die in a dream you do not actually die... so that's a myth after all... ).

I'm clearly dead in these dreams and clearly from status, yet i am still conscious, or there enough to see everyone who could have helped but did not. I don't know why they did not, only that they did not.

I realize this is just a recurring dream. Perhaps what i fear most is not myself - or my own willpower or strength - what i fear most is the cowardice of others. That perhaps they back off because they are afraid, or terrified.

At the end of the day, all i want is a hand to hold and reach for me - i can't extend my hand. I'm too hurt by now. I need you to reach out to me. That's not too much to ask. That much seems fair. Christ, if i can move the river in this way, then i think it's okay to ask for just this much.... don't you?

If i ramble, my apologies... I should have said more in the piece, clearly... You're great for reading. I hope you keep reading... there may be more on my site at tant mieux

wow this is long... talk about hypergraphia...

how very TLE.

be well,

s.r.p.

Dear Sadi,

My heart goes out to you with your daily challenge of living with epilepsy, It is important before any treatment decision to get the correct facts. It makes things less stressful.

The vagus nerve implant procedure does not take place anywhere near the brain. It is a ninety-minute out-patient procedure. There are no cognitive impairments( i.e. memory loss) or drug interactions.

The "pacemaker" like device( which weighs less than 2 ounces) is implanted in your upper left chest , just below your left arm pit. One lead wire is tunneled underneath your skin and coiled around the left vagus nerve in your neck, The small incision is made at the lowest fold( for cosmetic reasons) of your neck. The healed scar is barely noticeable. No surgical activity takes place near the brain.

I hope that helps. The procedure changed my life. I wish you the best of luck.

Charles E. Donovan, III-Implanted April 4, 2001 VagusNerveStimulation.com

hi charles - the information you give is interesting... the way it was explained to me was yes, like a pacemaker, but that it wires close to the brain - so maybe i (or clearly i) misunderstood this... so i need to look more at the link you said.

Thanks for the kind words you wrote as well... I'm glad and pleased to hear how much it has changed you life... i really think that's amazing. I would like that myself but i suppose i'm just too nervous. In a way, it's not that i do not want my life to change because being seizure free would be good, but that having another scar is just not what i want (if you saw, maybe then ... i don't know... maybe that's too vain to say, or maybe that's reasonable... to me it's reasonable). I feel that there are not enough guarantees for me to take this chance and i don't like the idea of anything implanted in my chest... or anywhere. It makes me nervous.

The whole flying thing is also an issue, since i fly a fair amount and I do know that they can deny epileptics travel and have already had problems with this even withing the US, particularly with travel to Texas, oddly enough. I had to have my neurologist ring and say that if they did NOT let me fly that they were in for a bigger problem... so it was real hell since i had been in status during that trip and away from home. Very scary.

So what to do?

For now, i choose to stick with a higher dosage of medication and an 'emergency' medication that they have added which, if they catch it in time, then i will take that...but of course, as you well know, there isn't always time...

now, my aura has changed so i've come to recognize it again (when it first changed, i didn't recognized the warning signs, so i just went straight into seizureville, eeks.... and no fun.)

Now, i recognize the aura and it's pretty strong. I hope it doesn't change again and that i'll continue to recognize it so that i will have plenty of time to lie down or / and take the emergency pill or call 911 or all of the above. Mostly, get myself to a safe place and call 911 before anything big starts... that nasty bitch of a grand mal which i'm sure you and i know all too well...

well, enough said.

I WILL check out the link you sent to be sure. I may have some wrong ideas about the implant because i am so nervous about it all. I don't like the idea of anything interfering with my brain because that's how i make my living as a writer... it's my whole life... so i'm scared... to say the least. And my dreams are clearly reflective of this.

Gosh, i do wish someone would save me... i rather liked the first dream. these later dreams are very hard...

be well, and many thanks...

sade.

Hi Sadi,

I read your comments with great interest. In many ways they capture a lot of how I feel but never speak about since I am the Patriarch of my household, so I have to be the strong one. My wife is Diabetic and this has cost her most of her sight (she is legally blind) and caused her to have open heart surgery and now has a pacemaker. So I have to be strong for her. I can't imagine how she would get along if something happened to me.

I myself developed complex-partial siezures about 16 years ago and I don't see anything positive in them at all. Unlike many people who have seizures, I receive no "auras" of any kind. My brain blacks out but my body doesn't and I continue to be mobile. The results of this are putting my head through walls, doors, cabinets, etc.

The first 50 years of my life I never broke a bone but in the past six years I've snapped my left upper arm like a twig during a seizure while cleaning snow off the car and last year I had one in my kitchen and broke my nose, splitting it open so that it had to be stitched closed, knocking out one front tooth and loosening another front tooth.

I see where you have great confidence in your neurologist. I have one question about the advice you were given. Were you told that installing a Vagus Nerve Stimulator could cause you to either aggravate or develop Sleep Apnea?

I know that I wasn't. I've had a VNS for over two years now and it did cut down on seizure frequency. But this is at the cost of now having Sleep Apnea. So my quality of life has plummetted to the point where I have no life to speak of. Plus, taking out the VNS is not going to change anything since the whole principle behind this device is to develop new nerve paths in your brain. These nerve paths conduct the electrical charges emitted by the stimulator and disrupt the brain's ability to build up electrical activity to the point where it goes into seizures.

I determined this by "turning off" the VNS for three days by taping the magnet over the VNS. This turns off the machine completely so long as the magnet is over it. The device is programmed to discharge every two to five minutes 24/7.

I had to stop after three days because I began getting frequent and stronger seizures while turning off the VNS wasn't helping the Sleep Apnea at all.

I wonder how you or a companion can "sweep" the VNS when you are beginning to have seizure or in a seizure if they install it below your breast? "Sweeping" means waving the magnet across the VNS, which causes an immediate discharge to the brain which will hopefully either stop a seizure from happening or shorten its duration if it does happen.

Mine is installed right ajacent to my collar bone on the left side of my chest so anyone can see it by looking at my neck area. It sticks out like a jelly jar lid under my skin. So when I "go out" my wife can see exactly where it is so she can swipe the magnet across the device.

When I told my neurologist that the Vagus Nerve Stimulator could cause Sleep Apnea and that I believed that it had caused mine since I didn't have Sleep Apnea until the VNS installed, he said that it couldn't possibly cause Sleep Apnea because that was not listed as a side effect.

The thing is that I had snuck into the Cyberonics site's Physician section and printed out their statement that not only can it cause Sleep Apnea but also Atrial Fibulation as well. I had already known about Afib because I had suffered from it before the implant so I had to have that corrected prior to having the VNS implant done.

So I called a meeting with my Neurologist, myself and a representative from Cyberonics and I presented the statement from the Cyberonics site to them so the Cyberonics representative had to admit to my Neurologist that the VNS can cause Sleep Apnea. Since that meeting my Neurologist has been slowly dropping the strength of the discharges and increasing the amount of time between discharges from 2 million units every 2 minutes to now when it is down to 1.5 million units every five minutes. The general range of strength is from 1.25 million to 2.25 million but the unit can go as high as 3 million units. It can go anywhere from every 1 min 30 sec to 5 min. Most of those I have spoken to run between 3 and 5 minutes and 1.75 to 2.25 million units.

I also filed a complaint with the FDA because neither my Neurologist, Neurosurgeon nor myself were ever told of this possibility. Of course, I haven't heard a word from the FDA nor do I ever expect to.

Another thing I wonder is did your Neurologist talk about the chances of the VNS working? The breakdown seems to be about 1/3 of those who have it receive no benefit or even may have a worsening of their condition (not counting any side effect problems like Afib or Sleep Apnea) so they have it removed. Another third are in the group I fall into, receiving some benefit but still requiring medications to supplement the VNS. Some of those may be able to reduce or change what medications they take but others may still have to increase dosages. The final third will see virtually complete control without the need for supplemental medication.

So in some ways I am in complete understanding of your concerns and feelings about epilepsy and the VNS. Also about life and death since the only medication that has any effect upon my seizures is Felbatol. The prescribing rules for Felbatol are to only prescribe it to people where the danger of dying from seizures is higher than the danger of dying from taking Felbatol.

I meet that criteria because my Complex Partial Seizures leave my abulatory but without consiousness. It is similar to sleepwalking except that it happens instantly, like turning off a light. Plus, unlike sleepwalking, this can happen when walking across the street or crossing the tracks at a railroad station. That is why I am considered totally disabled.

No company would ever hire me because of their liability exposure. When I was still working and didn't know I had Epilepsy I had flown to Minneapolis to teach a Relational Database class. I rented a car and drove downtown to the office building where the class was being held. I pulled into the indoor parking facility and apparently had a seizure because the next thing I knew I was several miles from downtown and it was 30 minutes after I had pulled into the parking facility! What is most amazing to me is that to exit that facility you have to make a tight curve around a huge brick wall. Then you have to turn right or left because if you drive straight you will run into another brick wall. I did all of that, didn't run over any of the rush hour pedestrians and if I ran any stoplights I didn't hit anyone and no police officers saw me.

So even though I'm completely blank about that half hour, my brain was functioning on some auto pilot level that managed to keep me from crashing into anything in a major downtown area during rush hour.

Obviously I don't drive any more and won't until I am seizure free for at least six months (I have never gone more than a month seizure free since I developed it 16 years ago).

I had enough danger of dying from my Epilepsy and now that has been multiplied many times over by the VNS causing me to now have Sleep Apnea. The effects of Sleep Apnea for those who don't know are hypertension, stroke, heart attack, compromised immune system, slow healing, unclear thinking, poor mental and emotional health, irritability, increased accidents due to inattention, etc. So you see why I say my quality of life has plummeted with the installation of my VNS.

You wondered if it could impare your ability to write your books? Well, I can tell you that if having a VNS causes you to develop Sleep Apnea, you will find it difficult to write a note to your hubby about having to cook his own dinner! I worked since I was 10 years old. I used to be all around the country and only averaged about 35 days a year in my office. Now I sit in a chair all day and night trying to stay awake. It has taken me all day to write this note to you that should have taken about 20 minutes.

I have two years worth of paperwork piled on my desk right now. Important work having to do with monitary issues with the Federal Government. Before I developed Sleep Apnea, I did the base work to establish these issues. Now I can't get up enough energy to follow through on them even though they could be worth a lot of money to my family. I just can't keep my mind working long enough to get anything done now.

I can't even read a book anymore. I read probably a thousand books before I got to High School. Now, I have to listen to books using Audible.com because I can't concentrate enough to read printed books. With Audible, when my mind wanders off of the book I can hit a button and repeat the chapter as often as I have to until I "get it". I do listen to the full unabridged versions instead of the "Reader's Digest" condensed versions. So a book like Moby Dick runs about 23 1/2 hours verses between 4-6 hours for the abridged version. Obviously they leave way too much out of the abridged versions of books.

So my point is that there are very serious considerations to be made before deciding for or against the VNS. The person being treated needs to know all of the facts before making this decision. Without those facts, no intelligent decison can be made.

Dear Sadi,

I read all the other comments here, including yours, and wanted to know how you are faring. The procedures you describe, and the procedures that other fellow epileptics describe here seem extremely dangerous.

I read one comment that was very pro VNS, and one that was very anti. I know that my conservative nature (so unlike my politics) would dictate staying away any such a device. Any threat to my ability to write is one that I either do my best to avoid, or do my best to conquer and destroy.

While it is not necessarily my career, writing is my life. Anything that would stop me from writing articles here (and elsewhere) would be a major threat because I believe that writing articles here and elsewhere is my mission in life. I have a job to do, and my writing here is a major part of that job.

I know another writer who suffered a stroke last year - I mentioned this because a stroke can impair the brain much as a seizure for an extended period of time can, and I've seen the damage both can do. This writer friend was unable to write effectively for over a year. His writing is coming back to its former sharpness and incisiveness - but I can still tell - sometimes.

I've been terribly lucky. Even though I usually suffered from full blown grand mal seizures where I would bang my head on the floor or chair, or radiator (once needing three stitches at the county hospital - I told everyone I got into a fight at the bar- they all bought it) - in spite of these full blown seizures, I was always conscious. I was totally paralyzed, but fully conscious.

Neurologists would refuse to believe me. Nu? What do they know? I have the disorder, not them. They are high priced peeping toms with the power to write a scrip. Unless they actually suffer from epilepsy, they are just outsiders looking in.

So, I've come to rely on myself and a few others who understand the power of the brain and how it works. I go to the neurologists for scrips. Where I live now, doctors seem less eager to push new treatments than they did where I lived formerly. I like it that way. On the other hand, were I still suffering from grand mal seizures, it might be different. There is a lot of advanced research around here that I barely even hear about. I have other fish to fry, if you know what I mean.

Hopefully, stem cell therapy will just what the doctor ordered for the two of us, and for all the other epileptics who suffer, so that the injuries our brains have sustained will be healed...

Anyway, it appears that I'm rambling.

May the Merciful One guard you and keep you safe from injury. May He clear your mind of worry and fear, so that you may help Him in creating the universe.

An admirer

Dear Dale :

I just came across your comment - for some reason, it didn't come through until now. I apologize for not getting back to you.

It sounds like you too have been through a lot.... The VNS is a lot to consider and frankly, whether it ought to or not, it frightens me on several levels.

Firstly, i am not certain that it will keep working (for example, i have a friend who has one and it worked fine until the battery needed changing and then it didn't work so well... and nobody seems to have a handle on why.)

I also have so many scars from other surgeries (Malignant Melanoma) and while i do not wish to sound vain, surely it is not too vain to say that i do not wish to look like the turkey after Thanksgiving to have yet another scar on my body, especially in that place where the VNS would go, as i understand it.

My seizures have not been under control for a while now and seem to have gone a bit haywire and i am afraid of anything that sends electrical impulses to the brain even if to level it out - it sounds in a way like shock therapy, even if it is, and i'm sure it is more like a pacemaker - which would be a more apt analogy. Still, i would be lying if i said it did not frighten me.

Listen, you know what it is like to live with epilepsy hanging over your head. It is a pendulum. Kierkegaard's sword just hanging there every day and you don't know when or if it will drop.

Most people say the classic, "Well, a car could come down the road and hit any of us any day...." and that's true. But it's a different thing entirely to have seen that car, been hit by that car already at least once and more, to know it is rounding the bend again.

In other words, you know it will happen. It's just a question of when so you live with this constant fear or you just live and try and forget about it as i do. I'm not sure if it is better to "know" you have epilepsy or not. Some epileptics have it so bad, that they are not aware even that they have it -- that's just awful and their seizures are awful. That said, I too, like many, like you perhaps, go into status epilepticus, the difference being that i am aware of it and all too aware of my own mortality. That's hard to deal with.

As a writer, i am home a lot of the day - most days - so what happens if i go into status and i'm alone? there is nobody to call 911. So maybe i die then. That's not melodrama, that just is.

For now, however, i suppose i still choose the medication route. I don't yet trust VNS enough - perhaps i am ignorant, stubborn, all of these things, or just plain frightened - that too - but i'm going back on Phenobarb....

I'm so sorry to hear of your troubles... and i'm glad you wrote to me... i wish you nothing but the very very best.

be well,

sadi r-p

dear admirer -

you've been through a lot, it sounds, and to be even a little bit conscious during any type of seizure is rough.

I am usually not conscious, unless it is in the first stages of the aura right before the lights go out and i can feel it coming and i remember thinking "gravity is so heavy" and then wham, i hit the floor...

I shake, seize, a full tonic clonic seizure. I don't remember any of them. Sometimes post-cards from the before and after the seizure but not during. What i remember is that it feels that i am being pursued through a field (which my neurologist, one of the finest - Verne Caviness) told me is not at all an uncommon fugue state or type of reverie for temporal lobe epileptics. Odd that we should see or feel the same thing or similar thing.

The only way i can relate to your consciousness of seizures of being awake at all is when i have complex-partial seizures in which i am half-awake, or my eyes are open, but i am not "there". At first i am, but then i am not. I am not responsive, i have gone into complex partial arrest and about the stroke, yes, it seems i may have had a small stroke and i know of at least one other epileptic who had a stroke during status, so this is not uncommon and that is very scary... you need oxygen fast and to be taken to the ER quick quick quick quick and no screwing around otherwise, you're in big trouble, so time is of the essence.

I really appreciate you asking how my seizures are now, how i'm feeling. I wish i could say, "Great!" but that would be to lie. I'm doing okay. That's the best i can honestly say. Sometimes better than others. When I am with certain people, I am happier than others and then i seem to have fewer seizures, but even then, if i get too happy, which overstimulates me, which sounds funny, then i can get seizures that way as well.

I remember finding out a story of mine was being publshed in an anthology a long time ago and i got so excited that i actually had a full grand-mal. Can you imagine? At such good news, to have something so terrible happen. So it's really a matter of over-stimulation and stress.

But again, there are those in this world that relax me more than others - or perhaps like nobody else - and that makes all the difference in the world and those person (or that) person then, is healing, like a shaman who travels with me down the witness tree and together we placate the goddess and all is well (what an epileptic thing to say! Talk about Geschwind's Syndrome, by god!). But I think you get my point.

I am going into the hospital for a week this summer for epilepsy monitoring so that they can see the locus of these new seizures and why my vision is getting worse and worse since my last status (i absolutely hate wearing glasses and i can't wear contacts.... i know, it's stupid, but i'm stupid and stubborn as i've said).

So i'm losing my vision because of this damn epilepsy and i'm afraid most days and i worry about my life expectancy. That said, in some way then it is a blessing because i take every day as it comes and i live in the Now and do not let a moment, not even now, go by without it having some meaning to me. Which means, in short, that i do not waste my time, unless by choice and real choice (thought out, conscious choice... "favorite waste of time").

You sound strong - like you have a lot on your plate as well - please take in turn my own admiration and best - my very best - for your situation. You are on my mind, and I pray it gets better for you. Stay strong, and write here if i can help... stay in touch, or write to me through my web site at

contact sadi. Just fill out the form and i'll email you back.... it will come straight to my email and i'll email you from there...

only if the spirit moves you...

be well... and thank you....

sadi