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Wired: Vagus Nerve Stimulation, Epilepsy, and Me

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There are risks with any major surgery. Even with minor surgery.

My neurologist wants me to get a vagus nerve stimulator implanted beneath my pectoral muscle, which is just below my breast. “A slight scar,” he says and runs his finger along the side of his arm, which would be where the side of my breast is, except on him, of course, it's just flat. Where he has no breasts. Which means that I would have yet another scar.

You see, I have had melanoma – multiple melanomas and dysplasias so that means that I have one very big scar on my shin where they took out about nine tumors, the scar by my groin where they removed the grape-like lymph nodes, the two (or is it three?) scars across my spine in parallel lines from excisions, the scars on my belly from pre-cancerous lesions, and then the puckered scars on my thighs from pre-cancerous freckles.

No more scars. Thank you. Between the already existing scars from adulthood surgery and childhood accidents, I think I have enough already; my friend Ian tells me, "Chicks dig scars," but since right now I am not into chicks (not in that way anyway), I don’t dig scars as a come hither thing anyway. And even if guys dig scars, I don’t dig scars.

Maybe they lend character, right? Yeah, come and talk to me if perhaps you have as many as I do, then we’ll talk about character. I have enough character by now to last a lifetime. After what I’ve been through to get the scars, I’ve built up plenty of character. Thanks, but no thanks. Perhaps you feel otherwise. I'm not saying by any stretch that I have the most scars, only that for me, I feel I have had enough. This isn't vanity, it is tiresome. Wait — let me revise that. To some extent it is vanity, I suppose, but not in any ordinary sense; I just do not wish to be scarred for life in any way — literally or figuratively.

As to my neurologist's vagus nerve stimulator – the electronic device with a wire that runs all the way to the brain and sends a spark when the brain misfires – I think that putting an electrical device that stimulates and regulates the brain is perhaps not such a great idea; in fact, I think it's a dangerous idea – in my book anyway. Yes, I may well be wrong. I read a great deal that tells me that I am wrong, but then again, it is, after all, my brain. You cannot electrically stimulate the brain and 'hope' that it will control seizures. What if it causes seizures? How do you know with utter certainty that it does not do the opposite of what it is supposed to do?

In my book, you can offer me, a writer, no real guarantee that it will do what it is supposed to do. I do not like screwing with my brain. I already have aphasias – is it already not ironic for the poet, the writer, to lose her words? I am terrified of losing more than I already have and perhaps I am making the wrong decision here. I may well be — maybe I am risking or increasing my odds of status epilepticus by NOT getting the vagus nerve stimulator; entirely possible. But I do not like the idea, and I do not like the idea of having a scar along the left side of my breast. This much is vanity… no, I do not want that. Sorry. I just don't. Do you blame me? And if you do, then I say, so what?

For example, my niece has a vagus nerve implant. She is in a constant state of status and has been for years even before she got a vagus nerve stimulator (though she has Lennox Gastaut epilepsy – a different form than mine, but still). She did get a vagus nerve stimulator but in her case, it was almost as if they felt they would try anything – after all, why not try anything if she was in a state of constant status, and I quite agree.

Cousin E. tells me, “It worked for a while, until the battery died and then we changed it, and then it seemed to stop working, or not work as well.”

Maybe her case is just a tough one –  I know it is, but if the vagus nerve stimulator is supposed to improve her condition (or my condition) I see no evidence of this in someone that I truly love. Moreover, what if this electrical wire that fires affects my writing ability, since it will be plugged directly to my left temporal lobe, the origin – or locus – of my particular seizures and the seat of all of my creativity?

So take this and the fact that I am presently working on three books, with one already under contract and a second, Grand Mal (gee, what could Grand Mal be about, but a memoir of living with epilepsy and what it means to limn two worlds – the 'this' world and the 'that' world of the epileptic, which is entirely different), in the latter stages of progress.

Grand Mal
is finished and I am editing it and have already gotten great feedback, so imagine the feedback it will get once it is edited (these publishers have asked to see it again in a linear format) but what if the vagus nerve implant impairs my ability to do this?

More, what if the implant impairs my thinking enough that I cannot write the book on Lewis Carroll that is now under contract with Continuum Books – a pretty large press – and isn’t it rather ironic that Lewis Carroll also had epilepsy? He didn’t have a vagus nerve implant, but then, they didn’t exist in his day. I wonder, would he have gotten one if he had the choice or would he have simply said "Oh nonsense!?"

I’d love to speak to him about it — I would wager he would say “No.” How could he have written Alice in Wonderland without his seizure states, for I am quite sure, as someone with temporal lobe epilepsy, that in the book there are just too many things that he writes of that mimic seizure states — the distortion of time, the shrinking and growing.

Carroll's Cheshire cat how smiles at Alice and says, "We're all mad here…" No, I am almost certain Carroll could not have written much of what he wrote without his epilepsy as the motor behind much of his work. How funny then that Carroll, after his death, was diagnosed as schizophrenic, multiple personality disorder, manic depressive, a drug user (LSD in particular) and more, when in actuality, the actual proof (in his lifetime) is right there in his very own diaries that say directly that he was actually diagnosed with temporal lobe epilepsy by his own doctor. The word epilepsy is used. He was treated for it.

Carroll had seizures which he wrote of in great detail, certain that the seizures were brought on by stress. So then why is it that so many biographers have simply overlooked this fact? It's interesting, isn't it? One looks forward to setting the record straight – the proof is there. The documentation is simple. One need only search – if I learned one thing at The Atlantic Monthly it was to check my facts and do my research, and this I have done. It amazes me to no end that of all of the books on Carroll, this simple fact has been overlooked time and again. How very odd.

My doctor can offer me no real guarantee about the vagus nerve stimulator other than he thinks it is a good idea, that it will "likely help," He thinks maybe it can, but maybe is not a guarantee. It’s still a maybe. I have real people, also epileptic, that I can point to and say, "This did not work as expected."  Isn't that enough?

I have accepted the fact that I am epileptic and will have seizures for the bulk of my life. Maybe I'll have a seizure that will kill me one day. Maybe.

Who knows? Maybe I'll die of something else. That's also possible. Life is nothing but ironic. So who knows. But the point is this — I have long made my peace with epilepsy and feel that yes, many not so great things come from it, but also, many other good things have come from it – such as the way I see the world, the way I write with a different skew, how I see things differently, my passion, a certain intensity that can be problematic but can also be great at times and accounts for a real and fierce loyalty to those I love as well as an intense morality which may or may not be good, but by and large has kept me on the straight and narrow.

Maybe you disagree, maybe you are even a temporal lobe epileptic and disagree, but by and large, I think I'm doing okay and even the giant of an neuroscientist Verne Caviness, who my present neurologist studied under, agreed with my assessment – yes, there are some good things; there are certain benefits to the epileptic mind. He tells me he has read my work.

One hates the term “mad genius.” Some people do anyway. It doesn’t particularly bother me. It bothers some because they feel the line is too thin between genius and madness, but who is to say that it is not? Genius is a slippery thing – you have to be a little mad to be a true genius, I think. You have to attempt what everyone says is impossible and do and to do that, you have to be a little zany, to say the least. Ask John Nash. Hell, ask me. I ran an imprint, a book publishing house that everyone told me would “flop” because I was publishing (in America) books in translation and in paperback at that and expecting them to be widely reviewed and to sell. It would never happen, I was told. “Watch me,” I said.

Every book on my list got a full New York Times review (of which I am intensly proud and should be, for that took a lot of work). Lumen Editions was covered by some of the biggest magazines in the publishing world and I was profiled by the biggest magazines as well, earning the moniker the ‘enfant terrible’ who had ‘taken the publishing world by storm.’

Is that good or bad? Does it have to be either? Do we have to really judge it that way? I don’t think it’s either good or bad. It just was. Lumen was successful and because of that so was I, and yes, I was the enfant terrible and perhaps now I am the enfant maudite – the damned child, and perhaps epilepsy is a part of that.

I was only in my twenties when I started Lumen and was Editorial Director of this publishing house and yes, I did what I was told could not be done – so they said. I was a brat. I was mad. It was genius. It takes a certain madness to attempt the impossible, and a certain genius to pull it off. I had Saul Bellow on my board — everyone wonders how that came to be — I simply called him on the phone and asked to meet. It really was that simple. There is no genius in that. There may be gumption, but no genius. That was ‘mad.’ It was also ‘genius.’ It also, for the record, simply worked. In this way, it was pretty banal. So you tell me, maybe ‘mad genius’ means nothing. It’s just two words strung together.

These days, my neurologist’s concern is this: that if I go into status epilepticus then perhaps I may suffer more brain damage, since last time I had amnesia for so long and have suffered some permanent irreversible effects, such as now I'm dyslexic whereas before I was not. I also sometimes drool out of the left side of my mouth when I lie down, but this has tapered off. I tend to fall more to my left side only where I have some scar tissue in my brain and what they call mesia lesions, and I have nystagmus – a rapid involuntary movement of both eyes, which affects how I see things so sometimes I see blurry or worse, I see double (dipolopia or sometimes I see things like a flickering movement like in high school when a reel of film got stuck and showed over and over again – this happens a fair amount). My neurologist and I spoke a lot today about these things, and he noted all of them and they're all physically verifiable and testable, so they are there – he can see them. Who could make this shit up, right? And who would want to? That would truly be sick. Unfortunately, I am stuck with this, but again, I'm okay with that by now.

But again, I don't really have a problem with it anymore. I have made my peace with this. It is my everyday life. Like any environment or any floor that you’ve paced, you just know it.

For my husband, this is harder to accept. He, like my mother, does not want to accept that I have epilepsy. Or he has, but he is so afraid that I'll die from it – perhaps fear of abandonment – that he would do the vagus nerve thing if he had his way, though he understands as a writer why I am reluctant for he, too, is a writer. He also knows that if I go into status and I have no "meaningful recovery" that I do not wish to be kept alive if I cannot write anymore because that would not be "meaningful" to me. I don't want to live in a world where I cannot write as I do now. Writing, editing is my life. We all define meaningful differently. I cannot say what is meaningful for you. Please don't tell me what is meaningful for me.

I have a good therapist as an adjunct to my neurologist to discuss epilepsy issues with and I have gone over this with her and she understands where I'm coming from. Look: you make your peace with this.

Epilepsy, particularly temporal lobe epilepsy, is both good and bad. People with TLE tend to have pretty high IQs so are hardly mouthing idiots who cannot make an educated decision, so it is important to let the TLE patient make his or her own decision. Some doctors say they have read my work online and in print about epilepsy and other matters and found the work to be very astute and insightful. It really gives them a real clue to the epileptic mind and one that was lacking before. Good. That’s good. It bodes well for my book Grand Mal. Perhaps others, too, then will see. It’s not a technical book or a book about epilepsy per se. It’s a book about life – any life. Just a memoir seen through a different lens, that’s all. It is like the book by Kay Redfield Jamison, a memoir of what it means to see the world the way I see the world every day, which is different from how you perhaps see the world.

I also told my neurologist about my dreams in which I am trying to 'outrun my epilepsy' and about my cousin Evander who usually saves me usually but lately, nobody saves me, including Evander, and I just die, which for me isn't too bad, but what happens in the dream is that everyone around me (because I have some consciousness after my death) is absolutely devastated and I care more about them than I do about myself in the dream. Oddly, the person the most upset in the dream is Evander… not my own husband.

Clearly, this is a misperception. Mark would be the most devastated. I am almost sure of this. I must be. Yes?

I tell my neurologist about the dream in which Evander saves me time and time again. That my cousin extends his hand and voila! I am saved from my epilepsy and pulled to safety. My doctor tells me that my dream is more vivid than most. (“I am being chased down Madison by 10,000 volts of blue epileptic electricity,” I tell him, “then I see my cousin who reaches for me from a black helicopter and pulls me to sudden safety and I am both saved and absolved.”)

This dream fascinates him. He says many patients with temporal lobe epilepsy have dreams of being chased by epilepsy or trying to escape it, but my dreams are particularly vivid and interesting. But then, I am a poet. I ask him, what does it mean that my cousin is no longer rescuing me? I tell him, most recently I have this recurring dream that Evander is not there, that he is not rescuing me in any variation of the dream. He says, “It means you are having issues with your cousin. I suggest you work them out.”

He did ask if I was worried about dying, and I told him yes, of course, who wouldn't be? Walk a mile in my shoes, right? It's one thing to say, I could get hit by a car, but another thing entirely to know that the car has hit you before and may be rounding the corner again and will certainly hit you again in your lifetime. That is scary. So yes, I do live in some fear. I know that car is coming; that is the key difference here. My car is a certainty, not a maybe.

We do what we can. We upped the medicine. We added an 'emergency' medicine to help stop grand mals if we can, which my husband will hold and some of which I will have on hand and if I have any kind of aura, I must immediately pop one. The aura I know pretty well now (it changed from before — now I feel dread, and real fear, an echo, and then I smell roses – specifically Moroccan rose attar – don’t ask me why, but it’s that specific – and I have aphasia).

As soon as I smell roses, I take the pill. That is what he said to do. So I am getting that script filled tomorrow. That is important to have on hand. I doubt I'll need it often, but when I do, it is my "hired thug."

This guy is good. He studied under Verne Caviness, as I said – my first epileptologist who is the best in the country, if not the world. He's built his reputation on his research and always took a keen interest in my case. I still have his notes and papers. I was always the 'classic case'.

In a way, oddly, it's an honor (of a strange sort) to be "so" epileptic – if you have to be, hey, you may as well be the one that interests the doctor most and who is successful, which is rare for someone with classic case of TLE and intractable seizures, they tell me. I should not be so successful, they say. I didn’t know this. Maybe if I knew, I wouldn’t have been.

The doctor says that all of the tests prove that I should NOT be so successful and YET… Evander is always sort of amazed too, and I’m not sure if I should be insulted or not. Is that praise or an insult? I can’t tell. I can never tell with him. So should I be proud?

Maybe that sounds funny to you, but just think of it for a minute. Objective EEGs and MRIs say I should by rights be a 'shut-in' and yet I produce and more, I succeed a great deal – not just a but, but a fair amount – I produce books, articles, I publish, I work when I can, and I am successful in my relationships. To have my neurologist say that I have given him a keen view into the mind of a temporal lobe epileptic, well, that is the best review I've ever gotten. Imagine that. Can you? It's really quite an honor.

I hope this makes some sense to you. It may not. I am not Van Gogh. I’m not that good. But then, he never got the recognition he deserved when he was alive — things take time. People, especially epileptics, are often misunderstood. They are seen but not seen. Maybe they see without seeing. I often think that. You see but do not see. People look right through me. They see me but do not see. Maybe I do not allow them to see, as if I live behind an impenetrable glass façade as a protection or veneer of sorts between me and the outside world. While I say that, I write and I try to let you in. This then is my attempt. Please accept this as an offering. I'm trying hard to explain. I hope that in some ways I have succeeded.

Words make me brave. It’s easier this way.

Thanks for listening.

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About Sadi Ranson-Polizzotti

  • http://alienboysworld.blogspot.com Christopher Rose

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

  • http://www.tantmieux.squaurespace.com/ sadi ranson-polizzotti

    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!

  • an admirer

    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.

  • http://www.tantmieux.squaurespace.com/ sadi ranson-polizzotti

    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.

  • http://www.MyDepressionSpace.com Charles Donovan

    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

  • http://www.tantmieux.squaurespace.com/ sadi ranson-polizzotti

    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.

  • Dale Johnson

    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.

  • An Admirer

    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

  • http://www.tantmieux.squarespace.com/ sadi ranson-polizzotti

    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

  • http://www.tantmieux.squarespace.com/ sadi ranson-polizzotti

    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

  • Nancy Bowling

    I’ve read what you have written, and when I got to the part where you mentioned the vns device, the hair om the back of my neck stood up. I, too, suffer from seizures. So do other members of my immediate family, but it is the member of my family who chose to treat hers with the vns device that has suffered the most. Because of that device she was hospitalized for almost a year, and is now permanetly disabled. That device can cause your seizures to become so out of control that you develop a psychosis. It can completely change who you are. When we finally realized that the device was causing her “issues” we ordered them to take it out, but the damage was done. When that device applied for its’ depression approval it was given conditions. In their approval order it even says: FAILURE TO COMPLY WITH ANY POST-APPROVAL REQUIREMENT CONSTITUTES FOR WITHDRAWAL OF APPROVAL OF PMA, and yet that has been ignored. In 2008 Cyberonics was permitted to submit a proposal to the FDA to have their original Conditions of Approval changed, and the FDA accepted. Being this is a Class III medical device and the conditions had already been in place for several years, that should never have been done. Go on the Maude Data Base and see all the warning letters this company has recieved. I have even been contacted by a parent who watched her child die from a seizure after getting this device and when she tried to contact the company to get some answers, they ignored her. She told me that before her child got the device they were all over her, trying to talk her into it, but afterwards, after her child died, they would not even return her calls. You want to do a story? Do a story on that. People need to know the truth about the side effects this device can cause.

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