FEAR, Anxiety and Epilepsy

Persons with E. are hampered by Fear. But for many epileptics, Fear isn't just Fear, it is a paralyzing state of Anxiety that is difficult to analyze and articulate for most of us. The co joined states of Fear and High Anxiety can create just the right conditions to bring about seizures, and at just the times none of us want them to occur! 

This is because the bio mechanics of Fear act on the brain, experts say.  The same is true for Fear's twin, Anxiety. And, for some of us, this action is just destabilizing enough to trigger a generalized or partial event. The very thing most of us work so diligently to avoid...

Getting control of one's Fear can be daunting. Most of us try to establish for ourselves some kind of rationale that will tell us what we are afraid of at that moment. Attempting to identify the source of one's Anxiety can be equally unfruitful. This never worked for me, because it seemed only to heighten my Fear and make me more vulnerable---sometimes to the point of feeling the urge to flee.

Okay, so what does one do about one's Anxiety & Fear???

Some people offer motivational advice. 

Motivational advice can be useful, sometimes. For me, the inspiration it brings seems to vanish in the throes of both Anxiety & Fear, so it feels useless, something I am unable to hold onto in a crisis.

But, someone once gave me something I can use even in the crisis moments: Zen breathing techniques! For me, this has worked pretty well.

I am no master of this at all, but I learned enough to know that when I become afraid, I want to hold my breath, and this natural urge compounds my troubles. Now, I have learned to breathe from my diaphragm. This is sometimes called "belly breathing". The effect is a good one, because when you can control your breath, you can act against both your Fear and Anxiety as well as  the physical responses they tend to create.

Belly breathing is a method you learn that requires you to breathe much more deeply---instead of drawing breath from your chest alone. For me, the technique begins with an exhale: I place a hand on my belly above my waist to feel the muscles contract. When I can exhale no further, I draw in a breath, slowly and deliberately, feeling the muscles in my belly act to draw in my breath. This makes me want to relax, and so I allow myself to feel the relaxation. Then, I do it again. For me, it can take five or six breaths to calm me down, or several more than that. I keep my posture straight when I do this, as it assists the action. I can do this sitting, lying down or standing (although I don't usually like to do it standing because I don't always trust that I won't fall over...).

Some offer the advice that belly breathing is like filling a glass---you pour the liquid into the glass, filling the bottom of the glass first, to the top and not the other way around. In belly breathing, you fill your belly first and then your chest... 

If you click on the title of this post, the link should take you to a video file that will instruct you how to get started with the belly breathing technique. 

Of all the advice I have ever received about learning to control my seizures, the breathing has been the most successful, the most consistent. This is not to say that a seizure will not happen on its own anyway, but I have found I have the best luck when I remember to use the breathing technique. 

See what you think!!!

Will "Ugly Laws" Make a Comeback???

(CBS) A Port St. Lucie, Fla., mother is outraged and considering legal action after her son's kindergarten teacher led his classmates to vote him out of class. 

Melissa Barton says Morningside Elementary teacher Wendy Portillo had her son's classmates say what they didn't like about 5-year-old Alex. She says the teacher then had the students vote, and voted Alex, who is being evaluated for Asperger's syndrome -- an autism spectrum disorder -- out of the class by a 14-2 margin.                                 

From the time of the Civil War until 1974, the United States had in place city ordinances, "ugly laws," that allowed the arrest and punishment of individuals considered physically unattractive. 

In fact, what was meant by "ugly" was disfigurement, disability, and disease. The main, stated purpose for such laws was to relieve the public from the sight of repugnant members of society. The real offenses for which these disfigured, disabled, and diseased individuals were arrested were (a) poverty and (b) begging. In a circular way, repellent features (missing limbs, sores, etc.) were often the reason for poverty and begging: such members of society could not gain employment and thus resorted to begging. 

Public protest and unenforceability were the reasons that the ordinances finally passed into oblivion. Today, however, similar patterns of employment denial and prejudgments about criminal status exist for the poor and disabled.

The desire to sanitize society, thus making socialization a pleasant, unchallenged act, is particularly hard on military veterans. After WWI, disfigured vets found returning to ordinary life difficult because once disfigured, they were never allowed to blend in again. After WWII, the same thing happened. Men and women whose features were newly augmented with prosthetics became resident sideshows in their communities. 

One wonders what the cost will be for the troops returning from Afghanistan and Iraq---the prosthetics are much improved since WWI & II, but society has gotten used to never having to look at someone else's hurts.

And what about the thousands of new epileptics returning home???  Will their presence signal an improvement in care for all of us? Or, will they simply be urged to go home and hide from society... because if they do not, will they,  like the Florida  kindergartner with Asperger's syndrome, find that they are voted out of their community for being "annoying"? 

Fight Back---Complain!!!

When we visit the doctor, we expect to be treated well and to be given professional attention. When this does not happen, most of us feel alienated. Since we need the help of doctors to maintain our condition, it is important for each of us to take responsibility when something goes wrong.

The best way to do this is to file a complaint with the medical board in the state the doctor practices. Here is a website that can give further information about this, what to expect and how to do it: http://www.iatrogenic.org/complaint.html

The next time I am asked to prove I need my meds, the next time I am abused for my condition, I will take action and file a complaint. If for no other reason that it may help to establish a pattern of abuse, so that the next person who sees the same fool might have a better chance of avoiding it.

Just thought you might like to know a way to get proactive...

The Persisting Stigma of E.

I want to take a running stab at an explanation for the persistant stigma associated with E...

There is a grand new book by Sadi Ranson-Polizzotti titled The Bedside, Bathtub & Armchair Companion to Lewis Carroll --- however, while writing and researching the book, Sadi encountered stiff resistance from other Carroll scholars against the notion of Carroll's epilepsy. The resistance is wholly their own, because Carroll freely admitted to it in his diaries. He was diagnosed with it formally and learned to cope with it.

So why the resistance to it today???

According to David Rothman's review,

Epilepsy: The real origins of the creative bizarreness

Carroll, it turns out, suffered from epilepsy, and Sadi says that shaped his imagination and led to surrealistic passages in his works—and maybe even in part to the birth of surrealism itself, for Carroll was surrealistic before the word existed. Think of that next time you read, say, of Alice falling down a rabbit hole or shrinking to three inches or growing to nine feet.

In other words, rather than slapping all kinds of Freudian explanations and tags on Carroll, a biographer might do better to search The Reverent’s diaries for his unwitting descriptions of the disease. Sadi says her work is the first book not to gloss over the epilepsy. In Carroll’s days, epilepsy bore enough of a stigma to discourage doctors from making such a diagnosis despite the obvious signs in his diaries such as the headaches and particular kinds of hallucinations.

I have not read the book yet, but based on Sadi’s lively and literate writings published here, I’d recommend you consider buying it if you’re an Alice fan.

Sadi has mentioned the resistance by others when it comes to identification of Carroll as a person with E. A relative of his makes a similar remark about him, related to his photographic endeavors:

I have lived my life with this association and I have never known exactly how to react to people’s views on Dodgson. On the one hand is the whimsy and delight of the Alice stories. But to others, there is a darkness about Dodgson’s subject matter for his photography. As an aside, there is precious little discussion of his significant contribution to mathematics.

From my own research, Dodgson’s photographic techniques were groundbreaking and the appropriateness or otherwise of his subject matter is simply a matter of opinion.

For what it is worth, Alice Liddell’s family seemed to have an opinion that it was not appropriate and thus succeeded in planting an element of innuendo into the interpretation of Dodgson’s behaviour. This seems more a reflection on Victorian morality rather than anything else.

It is important to note that in Victorian times, E. was considered a blight on a person which cast into doubt the quality of the individual--- it made questionable the moral standards of the individual, to be certain. Lewis Carroll's moral reputation was perhaps darkened by the fact of his epilepsy, and it seems as if that stigmatic darkness has pursued him to the present day.

It is important to keep in mind that it was during Victorian times that the medical community believed epilepsy (or at least some forms of epilepsy) were caused by too much sexual stimulation and it was Dr. Issac Baker Brown, surgeon, who advocated and practiced both male and female circumcision as a mode of treatment for epileptics, to lessen seizures.

The connection between sexual practice and epilepsy was a strong one in Carroll's day.

However, it is important to note, just as Sadi Ranson-Politzzotti has done, that the epilepsy was a huge contributing element to Carroll's genius.

I heartily and sincerely second David Rothman's suggestion that you purchase this book!!! It will provide new insight to your own condition as well as to the author so many of us cherish.

For ordering information, go to the following link: http://www.tower.com/details/details.cfm?wapi=111710568
To read more about this from Sadi's own blog:
http://tantmieux.squarespace.com/lewis-carroll/

From Sadi's site, you can learn more about how to purchase a personalized copy for your home library, or as a gift!!!
And, just so you know, Sadi is a fellow TLE---let's support her good work and insight by purchasing her book!!!

To Bell the Cat...

Once upon a time, as the story goes, a group of mice became so frightened of a cat that all they could do was huddle together. They did not seek food, they did not go into the house for warmth. They huddled and began to complain: "The cat creeps up on us and attacks us and we never hear him coming!"  

One day, while they were all huddled together, one of the mice had an idea: "What we need to do is hang a bell around the cat's neck so that we can hear him coming!"  According to Aesop, the mice worked out how they would accomplish this feat and did so, solving their problems with the cat...

I submit that many of us are huddled together, still trying to figure out how to get the bell around the cat's neck! I know crip-eleptic mice are still huddled and still working out how to hear the cat coming before it attacks them.  

Fear of the cat makes each of us vulnerable to him. We have to stand up, and we have to make it clear that we refuse to be eaten just for living in the same world as the cat.

Crip-eleptics are very afraid of the cat. They have been for centuries and they know the cat can ruin lives. They have seen it happen. 

Each year, there are those who are arrested by police because their behavior after a seizure may be antagonistic or belligerent. Because police are poorly trained about persons with E., they assume the behavior is willful, and directed toward them, so they make the arrest. Once in the system, these folks become its victims and their lives are never the same afterward.

My own idea for belling the cat is to become vocal and well-informed about the social aspects of our histories. Then, having gained this power, we must stand before the cat and speak up for each other when things go awry. If we can get no immediate satisfaction, then we must resort to becoming even more public, using our talents as writers to criticize the cat in print... 

We must volunteer ourselves in an effort to bridge the chasm of understanding between the cat's world and our own. And, when injustices occur, we must be available to help any way we can.

So far, I have discovered that belling the cat is a gradual process. But once accomplished, it lifts a terrible burden and makes living better. 

Persons with epilepsy are not the only ones who worry about the cat. 

Many of us find that the cat creeps up on us unexpectedly at times. Together, we can as a complete community succeed, if we are joined in a single effort against the cat. And, we can leave no one out, because each of us may have something essential to contribute to the strategy for getting the bell around the cat's neck.

Frustration...

When is my best, good enough? I comply, I take the tests, the pills and the insults from the medical establishment, the public, even family...

It is difficult to express how long and deep frustration is when you live with E... Want information on E., go to the web and search for a non medical site about it. When you find one, see if they talk about daily living with E., or the emotional, psychological, sociological aspects of life with it. Most of them don't.

What you will find, in huge numbers, are sites that advertise drugs, talk more about tests and findings, doctors etc.---in other words, an entire medical cocoon to wrap up in! 

When you go to the doctor, how hard do you have to struggle to get information relevant to you? Besides generic advice on getting enough sleep, watching your diet and taking your medications regularly, what do they really tell you?

Epilepsy is frequently misrepresented. On television, when they want to show a person 

with E. seizing, often, the actor presents E. as something like a two-year-old throwing a tantrum on the floor---lots of flailing of arms and legs. 

Never accurate.

Lately, I have been hearing more and more comments related to E.---"he got so mad he looked like an epileptic lizard" and the like. Or, "you don't have to get all epileptic about it". This isn't sensitive and does not help any of us!

Ann Jacoby and Joan Austin have written:

For many people with epilepsy, the continuing social reality of their condition is as a stigma. Epilepsy stigma has three different levels; internalized, interpersonal, and institutional. While there have been documented improvements in public attitudes towards epilepsy, the remnants of "old" ideas about epilepsy continue to inform popular concepts resulting in a difficult social environment for those affected. The social and quality of life problems arising from a diagnosis of epilepsy can represent greater challenges than are warranted by its clinical severity. The relationship between stigma and

 impaired quality of life is well documented. Tackling the problem of stigma effectively requires that all three of different levels at which it operates are systematically addressed. (Ann Jacoby, Joan K. Austin (2007) Social stigma for adults and children with epilepsy, Epilepsia  48 (s9) , 6–9 doi:10.1111/j.1528 1167.2007.01391.x Epilepsia 48 (s9) , 6–9 doi:10.1111/j.1528-1167.2007.01391.x .)

What about people in general? How about elementary school? Ever been faced with the suggestion that your son or daughter cannot be accepted because the epilepsy might frighten others or be an insurance liability?

How about employment? Housing? Two terrific areas of concern, and both frequently make use of the "insurance liability" phrase as a means of denial... Some years back, I can recall being denied employment on the basis that I didn't drive---even though it was not a requirement of the job, it was the basis of my denial.  That same year, I applied for an apartment, and was told I didn't qualify because I had E., and because I "might turn violent" and wreck the place. 

What am I expecting to find, since I have come out as epileptic? 

Equality, acceptance, and opportunity.  

Paranoia as a feature of E.?

According to Orrin Devinsky and B. Vasquez in Behavioral Changes Associated with Epilepsy, 

Epilepsy can be accompanied by changes in cognition, personality, affect, and other elements of behavior. There is no single epileptic constitution or personality complex. A unifying theme to the behavior in epilepsy is diversity. As one looks at the behavioral traits reported in epilepsy, a specific and consistent pattern is lacking. Rather, extremes of behavior are accentuated: sometimes in one direction, often in both directions. Changes in emotional state are prominent among behavioral features in epilepsy. Some authors describe a prominent deepening or increase in emotionality, whereas others identify a global decrease in emotional life and content. Emotional lability is also reported. Sexuality and libido are typically decreased, but fetishism, transvestism, exhibitionism, and hypersexual episodes also occur. Concerns over morality may be lacking or exaggerated. Patients may be irritable and aggressive or timid and apathetic. The impressive list of people with epilepsy in politics, religion, arts, and sciences suggests a positive expression of this behavioral spectrum. Psychosis, depression, paranoia, and personality disorders may represent a negative pole of epilepsy-related behavioral changes. The most important aspect of behavioral changes in epilepsy for physicians is to recognize and treat dysfunctional behavior. Depression is a common problem that is often unrecognized and untreated. Other treatable problems include impotence, anxiety, panic attacks, and psychosis. Identifying risk factors will, it is hoped, assist in developing methods to prevent these disorders,

 Neurol Clin, 1993.

The feelings one may develop toward others can be devastating to personal and social relationships. When one mistrusts and suspects others constantly, one loosens his or her grip on what is real, what is actually going on around him/her. It can be difficult to live this way, for everyone, and there is an urge to isolate one's self away from others, something that is harmful to the sufferer.

Paranoia itself, is often described as a

disturbed thought process characterized by excessive anxiety or fear, often to the point of irrationality and delusion. Paranoid thinking typically includes persecutory         beliefs concerning perceived threat. In the original Greek, παράνοια (paranoia) simply means madness (para = outside; nous = mind) and, historically, this characterization was use to describe any delusional state.

Living in the grip of paranoia is difficult. It makes trust impossible. It can also make communication with others difficult because the individual may feel he/she needs to edit everything he/she has to say. 

In my own case, I have found relief from the paranoia to which I am prone through my medications. They act as a stabilizing element, and for me, this has meant a great and positive change in my life's experience.

Now, the biggest anxiety I suffer is directed toward my doctors, whenever they want to discuss changing my medications! 

Finding stability is difficult. Being free from seizures is only half the battle for me. I need also to be freed from the paranoia that seems to accompany my condition. I am TLE, left-side, and being rid of the instability makes me able to be consistent in my personality, thinking, and interactions. This is a miracle!!!

To be able to remain in my mind instead of outside of my mind is wonderful to me...

Driving...

            Driving is something most of us take for granted.  It’s something we can’t wait  to do.  Later, it’s just part of what  we do.

            Driving makes your life different. 

            When my daughter asked me how I felt about having a driver’s license, I really didn’t have to give it much thought---then I realized something:   When you walk from place to place, you gauge everything in terms of strength and endurance---your own. You get only as much stuff as you can carry.  You make every ounce count.  You never even think  of getting stuff that’s heavier than you can jerk and carry.  You never get things bigger than you are.

            The first time I went to the K-Mart, I got so excited about all the great things and the great prices, I bought a truckload. 

            After I checked out, and pushed my cart outside to the parking lot, I realized I didn’t have a car.  I had walked there.  I also realized I couldn’t carry home the things I just bought.

            I was mortified to have to call a neighbor to come get me---and my stuff.                                   

            Stamina and endurance are re-evaluated once you have a vehicle.  The bigger the car, the more powerful the engine, the more you feel enhanced.  The more you can do.  The more you can buy.

            So, when my daughter asked me about driving, I was quick to say that now I could go back to the K-Mart---and buy things that were too heavy for me to carry home.  And some things that were bigger than me, as well.

However, driving is a serious source of contention among epileptics. There are some who feel it is a privilege, others who feel it is a right. I have read in sociological studies, that driving is a normalizing act that makes us feel socially equal, if only by having the driving license---whether or not we use it behind the wheel.

Life without a license can be full of added obstacles, of the kind you might never consider. For example, ever been turned down as a job applicant because you had no driving license? I have. I have been told that taking public transportation or depending on a ride from someone else would make me unreliable in the work place. 

Ever try boarding an airplane without a driving license? Forget state-issued identification, because there are still many people who question the validity of the state I.D.---but no one questions a driving license!

If you have E. and want to drive, there are circumstances under which it is perfectly legal for you to do so. These conditions are not the same, state to state, but many of us can drive, legally.

Driving is a key to many things in life, but most especially, it can be key to the way we see ourselves as individuated parts of our society's whole. 

Patient and Guinea Pig: The Same Thing?

 I borrowed the title for this post from Mike C. at Epilepsy and Life. Double-click the title to read his post there. He chronicles an experience in which he is asked to participate in a study. 

Mike relates his anxiety with docs and hospitals in this post and he raises questions that seem only relevant to crips like us---all of us!

When was the last time any of you felt secure with your doc??? I know I haven't felt secure with a doc for a very long time. This is probably because once they discover my E., they seem to want to prove I don't have it, prove it is somehow psychogenic and not 'true E.' or disregard my condition altogether, because they feel E. is a common disorder but not a dangerous one!

Then, there are those who feel we are great subjects for research studies. So, they begin to see us, not as human beings any longer, but as study animals. I don't know what is worse, the notion that I am being disregarded, discredited or dehumanized!

 

"Do No Harm" seems only relevant to docs when they are dealing with otherwise able-bodied patients. When it comes to their crip patients, they seem anxious to shuffle us off, into studies or into some other care protocol.

How often are persons with epilepsy shuffled off into psychiatric care or into psychological counseling? How often are our seizures attributed to these kinds of conditions, even though there is plenty of information in journals concluding that E. often presents in ways that are imitative of psychiatric pathologies??? 

Does this mean docs are bigoted, or does it simply mean that many, many docs are undereducated when it comes to coping with epilepsy?  My own take on this is that docs are frequently undereducated and that they reach an end to their abilities early in the doctor-patient relationship. When this happens, they search for a good excuse to let go of us as patients, but without feeling they have abandoned us. 

I would love to see a study of doctors done, asking their feelings on E. and whether or not they feel confident treating patients with it. I would also love it if these docs could be asked if they are aware of current treatment, proper first aid techniques for convulsions, etc. 

I think the outcome of such a survey might be fascinating.

Shall We Play A Game?

I used to hear it alot: a kind of playground mind game that travelled with folks my age into adulthood. It goes something like this: which would you rather lose, your eyesight or your hearing?

Then, there is the list game: how many illnesses or conditions can you name for each letter of the alphabet... 

The thing about these kinds of games that strikes me beyond their insensitivity is the constant reference to ill or disabled people as the social 'other'--- reinforcement of the them versus us status.

These games never work to make the players more sensitive or aware. These kinds of games never seem to offer any kind of inclusion. Instead, these games keep reminding all of us, collectively, that there are others whose lives are miserable because they are not like us.

Okay--- I have a new game: which would you rather lose control of, your consciousness or your bowels?

Thanks for playing!

See you next time!

The Hardest Part of E.

There are obvious reasons persons with E. have trust issues---the longer they have E., the more complex these issues seem to become. This may be the hardest part of living with E., overall. I find I am unwilling to trust others---this springs to mind as  the hardest part of E. Let me explain: I trust my husband, because he has been by my side, seen my most terrible convulsions, cleaned me up afterward, and still loves me.

But, contrast this single extension of trust and  confidence I willingly extend to my husband with my responses to others in my world, those who wear titles suggesting, by social convention, they should have my trust, and the world seems a little bleak for me because these titled folks frequently seem to fail my trust.

Doctors---I have seen many of them in my lifetime and I fail to see any advantage in giving any one of them my trust. Often, this is because they seem a little hazy, or downright ignorant, about my condition. Since I understand my condition well, they become resentful, even antagonistic during the treatment process. They question whether or not I really have E. in the first place, they develop reasons for running the same tests over and over again, then they cannot decipher the results of those tests, once they have them in their hands.

The general public: these are the ones who question whether or not I am retarded, whether or not I am criminal, whether or not I am contagious. Some suggest to me that my E. stems from past-life sins of a horrific nature, or that I might benefit from an excorcism to rid me of my condition.

Drugs, surgery, alternative methods all eventually reveal something dangerous to me about the ones who want me to use their methods. For example, I have been periodically informed that chiropractic can cure my epilepsy. Yes, a few good, bone-cracking sessions with these certified quacks and I will be right as rain. No thanks.

Have I just settled into my own, comfortable cynicism or is it experience that informs my attitudes?

I say it is experience. For example, when one prevails upon the medical establishment for help, then finds the individual doctor in his office, looking up Epilepsy in his reference books, one might feel let down, perhaps just a little.

Or---let's say one seizes in the presence of a nurse, and she tries to shove her wallet between my teeth? It is apalling to me how many folks still believe this to be proper first-aid for a seizing individual! 

This would indicate to me that public education has not reached enough folks, and so a better job needs to be done. What baffles me is the notion that folks have learned the Heimlich maneuver for a choking person, but they still don't know enough just to roll us to one side until we finish our seizure??? Or that it is not necessary to call paramedics for Every seizure, but only if they last longer than 10-15 minutes...

Trust is the hardest part of living with E.---or the lack of it! 

(The Symbol to the right is a Chinese character for "Trust".)  It represents

a goal, something to strive for. 

Hiding on the 'Net: Hate Crimes Against Epileptics...

I was startled when I looked up 'epilepsy' on You Tube, to discover much content designed to provoke seizures among those of us with E.

Then, when I checked my email from the Epilepsy Foundation of America (EFA) a few days back, one of those haters had sneaked in and posted (unsuccessfully) something else designed to cause seizures, complete with an embedded message: You Deserve a Seizure for your Postings.... when the EFA is successful tracking these anonymous fools down---they may be prosecuted for hate crimes, particularly if anyone reports they have been hurt by this content.

What kind of little twerps would do this kind of thing? I can imagine, sheltered in the shadows of the internet, these little pigs howling with laughter at the prospect of hundreds of epileptics suddenly seizing in unison, because of what they have created. They must really dig the power fantasy...

This just in: the EFA has discovered who you are, what you did, how you did it and have turned over the information. Now, you just have to wait for the knock on your door. (You left footprints!)

The notion that folks will take off after any disabled folk is sickening. It brings to mind the Nazi doctrine of "the useless eater", those disabled who do not deserve to live among the healthy---that somehow, we are only a drain on society, that we contribute nothing to our fellow man.

How is it okay for disabled Americans to be left out of the civil rights language used to protect all others??? Protected classes of human beings, of citizens, should be equal under the law---not excepted from it. Below is a comment on an opinion piece called "Too Big A Tent":

Re: "Too big a tent," editorial, Oct. 29

I was surprised and dismayed to read an editorial urging Congress to narrow the hate-crimes act to not include people with disabilities.

Greater inclusion of people with disabilities in American society has not been a painless process. To say there is no problem is to relegate people with disabilities to a second-class status in which bias-motivated crimes on the basis of disability are somehow more tolerable than those committed because of a person's race, ethnicity, national origin or religion.

Thirty-one states and the District of Columbia include people with disabilities under their hate-crimes statutes, but this is not enough. The federal government must send the message that hate crimes committed because of disability are unacceptable and give meaning and substance to this message through the act's provision of crucial resources to local law enforcement.

Curt Decker
Executive Director
National Disability Rights Network
Washington, DC

I have to agree with Mr. Decker. This needs to be a nation-wide law with teeth in it. It should also include language against "mercy killing", euthanasia and assisted suicide. Too many of us could be easily pressured into agreeing to relieve our families and loved ones' of the burden of us... And, not to put too fine a point on it, it should also include crimes of hate perpetrated on the internet, specifically against disabled groups, like our friends, with the clever scheme to invade the EFA chat groups. Hateful, yes. Successful, certainly not.

According to the Southern Poverty Law Center, hate groups in the United States have risen 48% since the year 2000. Lots of these folks like to take off after the disabled. It is important for all of us to support the Southern Poverty Law Center and become familiar with the work they do on all of our behalves.

Stay well, be careful and safe... even online!

A Question of Balance.

It seems, the more medications I take to quiet my seizures, the less balanced I become.

I can’t count the numbers of bruises all over my body in any given month, from tipping into the edge of a cabinet or thwacking against some other hard surface.

And, it has always been so.

To the right is an artwork by Sean Brown,
titled Yoga Firefly, and it suggests the kind of physical balance I would like to achieve, but which seems to elude me. Unlike the subject of Brown's piece, I am far less in control of my balance, and it is not nor has it ever been a question of desire.

For me, as is true for so many of us who take drugs for E., the balance we hope for is one between function and seizure control: can we take the right amount of AEDs to quiet our seizures and yet have enough bodily control to be able to cross a room without catastrophe? I have to say, there are times when I feel I am at the very edge of that delicate edge, praying my fingernails will hold out long enough for me to retain the bit of balance I have achieved.

But, balance hasn't only to do with gait. There are also things like grip---ask my husband. Whenever I do the dishes, he worries. Any crash-like sound coming from the kitchen could be me, starring in yet another disaster. To date I can say that I have broken enough glassware for about half-a-million weddings. Yet, no one has wished me well or shouted congratulations to me.

Eduard Munch's "Anxiety" (1894)

Epilepsy and the Problem of Anxiety...

Anxiety is common to lots of folks. It isn't unusual for any of us to suffer from it, and in various ways. Still, for epileptics, like myself, anxiety can be a complication or symptom of our epilepsy, and it is something frequently misperceived by others.

Jerry Federspiel created this expressive graphic titled "Anxiety". I thought it it represented something common to the experience of many epilepsy experiences. Federspiel has a double degree in computer science and psychology from Wisconsin, and I am certain both areas of study have informed his imagery here.

According to Orrin Devinsky, M.D.:
Anxiety, panic, and phobic symptoms can occur in people with epilepsy, especially those with limbic epilepsy. Limbic epilepsy is seizure foci arising in limbic brain areas; limbic areas are regions in the temporal and frontal lobes, which are involved with memory and emotion (1–4). Anxiety disorders may be more frequent in patients with left than in those with right TLE (2).

Researchers surmise "up to 50-60% of patients with epilepsy may develop psychiatric complications, in particular depression, anxiety, and psychotic disorders."
They aslo readily admit difficulties and a lack of understanding of how best to treat these incidences when they do occur.

Anxiety is related to epilepsy in specific ways. Elana R. Pulver has written: "It can occur not only as a reaction to the diagnosis, but also as a symptom of the epilepsy, and, in some cases, as a side effect of seizure medicines. When considering a diagnosis of epilepsy, it is very important to distinguish it correctly from other disorders. Some people with high levels of anxiety can experience panic attacks, which are characterized by intense feelings of nervousness, fear, and the sudden appearance of bodily symptoms such as sweating, hyperventilation, accelerated heartbeat, and flushing of the skin. In some cases, panic attacks have been misdiagnosed as epilepsy, and epilepsy has even been misdiagnosed as panic attacks! Because these symptoms of anxiety can be present during a seizure, in many cases the two are hard to differentiate. In extreme cases, hyperventilation caused by anxiety can trigger a convulsion, which can further complicate the diagnosis. Also, because the panic attacks occur suddenly and without warning, they are extremely frightening; the person usually believes that they represent a serious medical condition. Because panic attacks and seizures can be so similar, it is important to use techniques such as MRI and EEG to differentiate between them".

And then there are the other instances, like Ms. Pulver points out, when E. is misdiagnosed as "panic attack" or "anxiety". Sometimes this happens because the differential diagnoses is difficult to make. Sometimes it happens because there are mitigating factors, e.g. cultural sentiments against a diagnoses of E., that color a diagnoses of E...

While I was in college, I knew a young man. Very intelligent, good guy. He went on a trip with the honors society and when he came home. he told us that he had some kind of event. He was alone, in a hallway of the hotel in which he was staying. He found himself waking up, on the floor and discovering that he had chipped his teeth. He couldn't say what had happened to him, but after submitting to his doctor, he came back to say he had been diagnosed with "anxiety". Hmmmmmm.

I suppose I could have been happy with that if he had not chipped his teeth. The chipped teeth suggested to me something more like a tonic-clonic or convulsive event. But, I am not the doctor...

In line with earlier reports, a recent paper, to be published in Journal of Anxiety Disorders (available online 13 June 2005) posits the existence of a subgroup of panic attacks with the clinical features of the epileptic aura, and so must be considered and diagnosed as simple partial seizures (SPSs) with a psychic content. In the paper, research is presented to support a hypothesis that panic attacks, when they have the same clinical signs as the epileptic consciousness, should be diagnosed as partial seizures with a psychic content.

After setting out the four clinical signs defining it (suddenness, automatic nature, great intensity and strangeness), the authors made an extensive review of the literature in search of scientific information to support the hypothesis, which reveals a wealth of concurring scientific evidence, at both the clinical and preclinical levels, to support the hypothesis presented in this paper. The authors conclude by saying that panic attacks observed clinically with the features of suddenness, strangeness, great intensity and automatic nature should be interpreted as SPSs. (http://www.medindia.net/news/view_news_main.asp?str=2&x=5388)

The last bit was especially helpful to me when I came across it. Now, when someone insinuates that my anxiety has nothing to do with my E., I can reply back that it well may be a part of the kinds of seizures I suffer. It isn't something external to my condition, but rather something integral to it.



1. Perini G, Mendius R. Depression and anxiety in complex partial seizures. J Nerv Ment Dis 1984;172:287–90.
2. Altshuler LL, Devinsky O, Post RM, Theodore W. Depression, anxiety and temporal lobe epilepsy: laterality of focus and symptomatology. Arch Neurol 1990;47:284–8.
3. Vazquez B, Devinsky O, Luciano D, Alper K, Perrine K. Juvenile myoclonic epilepsy: clinical features and factors related to misdiagnosis. J Epilepsy 1993;6:233–8.
4. Cutting S, Lauchheimer A, Barr W, Devinsky O. Adult-onset idiopathic generalized epilepsy: clinical and behavioral features. Epilepsia 2001;42:1395–8.

My Tonic-Clonic Experience

This is the way I feel coming out from the blackness of a convulsion. I don't know who the artist is or I would offer credit and my sincerest thanks for graphically expressing something so esoteric and difficult to explain to those who ask or wonder about without asking.

The involuntary scream, the rolled back eyes, the sensation that I am under water, that I may not be able to break back into consciousness again...

SUDEP

I have been epileptic 52 years now. All along the way, I have suffered from disability bigotry from a wide variety of folks.

Bigot is often used as a pejorative term against a person who is obstinately devoted to prejudices even when these views are challenged or proven to be false or not universally applicable or acceptable.

I suppose the most difficult bigotry to accept is physician bigotry. To my way of thinking, epilepsy seems to make doctors with prejudice appear from nowhere!

My own GP believes E. to be a fairly innocucous malady. She has said to me, more than once, that at "least it isn't something that can kill you", so why worry about it?

Sudden Unexpected Death in Epilepsy, or SUDEP is a term used when a person with epilepsy suddenly dies and the reason for the death is not known. The cause of SUDEP is unknown. Post mortem examination usually reveals no abnormalities in victims.

Of those who die from SUDEP, it is most common in people who have generalised tonic-clonic seizures, especially in young adults. The most important 'risk factors' seems to be poor seizure control, and seizures occurring during sleep.

SUDEP is relatively uncommon. Roughly 1 in 200 sufferers of severe epilepsy die of SUDEP each year. For sufferers of mild idiopathic epilepsy (epilepsy of unknown cause), the figure drops to 1 in 1,000 per year. The incidence of SUDEP among people who are in remission from epilepsy is negligible.

Cary Groner is a freelance writer in northern California, writing for Applied Neurology on SUDEP, says that research suggests it may be the cause of death in 7% to 17% of all epileptic patients and in up to half of patients with refractory epilepsy. Almost all victims of SUDEP die at home, usually in bed.

Research is helping clinicians profile which patients are likely to be at highest risk. Important contributing factors include a history of uncontrolled seizures as well as seizure type (tonic-clonic seizures present the gravest danger and are associated with at least 90% of SUDEP cases; complex partial seizures also increase risk, but absence seizures do not). Evidence suggests that epilepsy duration heightens risk (most persons who die of SUDEP have had epilepsy for 15 to 20 years).

Elson So, MD, professor in the Department of Neurology at the Mayo Clinic College of Medicine in Rochester, Minnesota, adapts his decision to the individual patient but favors providing the information about SUDEP. "Patients with a history of uncontrolled, generalized tonic-clonic seizures are at highest risk," So said. "Those are the ones I pay the closest attention to and counsel about SUDEP. I think they need to know."

Okay, great. But what about discussing SUDEP risks with clinicians? Apparently, physicians treating patients with E. are subject to 'myths' about E. How these "myths: came into being is a direct function of sociological dynamics.

Despite early work on SUDEP, during the remainder of the Twentieth Century, the subject of epilepsy deaths was neglected and any research on the subject was ignored. In medical texts, and thus in the minds of medical practitioners, a ‘myth’ was established that epilepsy itself was not fatal. ’As far as longevity is concerned, the patient should definitely understand that epilepsy per se rarely causes death and that there is no reason why an epileptic should not live as long as he would if he did not have epilepsy’. (Dr. S. Livingston, Living with epileptic seizures, 1963) However, Rodin’s textbook, the Prognosis of Patients with Epilepsy, 1968, was a notable exception to the current thinking: ‘It appears to be quite obvious that the life expectancy of the epileptic individual does not reach that of the average person. It is also quite impressive that the figures have not shown a dramatic improvement during the past 5 decades. Although death from a seizure is relatively rare, it does occur on occasion and is not preventable under all the circumstances at the present time.’

An explanation as to why SUDEP was forgotten comes from Dr. Lina Nashef in 1995. Following two World Wars, the subject was addressed again but the setting had altered and new writers did not pick up where others had left off. Effective modern anti-epileptic drugs meant that Physicians felt both optimistic and omnipotent. Patients with epilepsy had moved from asylums into the community and there was much less opportunity for observation. Risks from epilepsy were minimized, then denied; that epilepsy could not be fatal became ‘common knowledge’ despite evidence to the contrary.

From the 1970’s to the 1990’s, scientific interest in epilepsy deaths and SUDEP was increasing steadily but most medical textbooks still chose to either ignore the subject altogether or to go in the face of research and make assumptions about the lack of risk in epilepsy. One exception is the following by G.Jay and J.E.Leestma in 1981: ‘There should be an increased awareness that SUDEP in epileptic patients is probably not an extremely uncommon complication and that as more is known about its substrates and mechanisms, that education of the patients and their physicians regarding preventive measures, including careful attention to medication, may decrease or eliminate this catastrophic complication of epilepsy’. (Acta Neurologica Scandinavica Suppl.82, Vol 63).

During the 1990’s there was collaboration on the subject of SUDEP between researchers in the United States, the U.K. and elsewhere, and in the U.K. a self-help group for relatives, called Epilepsy Bereaved, began raising awareness of SUDEP through other epilepsy organisations, the media and by conferences. The risk of death from epilepsy became a subject for open debate and serious concerns about SUDEP were tackled in an increasing number of medical books.

In 1998 there was front page coverage of the story of Prince John which resurfaced when photographs belonging to the Duke and Duchess of Windsor were published for the first time. ‘HRH Prince John who has since infancy suffered from epileptic fits which have lately become more frequent and severe, passed away in his sleep following an attack this afternoon at Sandringham.’

Prince John, the sixth child of George V and Queen Mary died in 1919 aged 13. (In 2003 the BBC made a drama series about the short life of Prince John).

Epilepsy is often assumed to be a benign condition with a low mortality. There is, however, increased mortality in patients with epilepsy, which is relatively high among younger patients and those with severe epilepsy. (Hauser et al, 1980, Hauser & Hersdorf fer, Nashef et al 1995a).

The risk of SUDEP in the general population of people with epilepsy is of the order of 1:1000 per year, typically a young person, 20-40 years old, with poorly controlled tonic clonic seizures.

Most SUDEP deaths are un-witnessed, but there is evidence that SUDEP may often be preceded by a seizure. For people with severe epilepsy the risk increases to 1:200-300 per year.

In one American study a SUDEP rate of 1 in every 370 people with epilepsy has been suggested. (Leetsma et al 1989). It is however a fact that, through ignorance and misunderstanding - few doctors and even fewer coroners are aware of SUDEP - epilepsy related deaths have often not been accurately recorded and the exact number of deaths falling within the category of SUDEP is not known. By declaring a death resulting from a bath-time seizure as ‘drowning’, or a fatal nocturnal seizure as ‘suffocation’, and by not mentioning the epilepsy connection, valuable research data is being lost. SUDEP is death in an otherwise healthy individual with epilepsy where there is no clear explanation of what caused the death.

Evidence suggests that most sudden deaths are related temporally to un-witnessed seizures and may occur during sleep.

The exact mechanism of SUDEP is unclear although essentially it may be respiratory or cardiac. Indeed there may not be a single explanation for such cases and research is ongoing. One theory that may explain the respiratory factor is that epilepsy itself and/or the medications taken (AEDS) may weaken some major organs, causing patients to have difficulty in breathing, especially during a tonic clonic seizure.

Respiratory problems may be due to an airway obstruction or fluid in the lungs (pulmonary odoema) or the seizure discharges may spread to the respiratory centre and cause a terminal apnoea (cessation of breath). It is known that many people who experience seizures stop breathing for a significant time. While it may be common to recover from a seizure and return to a steady normal breathing pattern, a problem arises when the natural recovery does not happen. In essence the patient could suffocate.

The other possible cause of death is cardiac related problems when seizure discharges spread to areas that control heartbeat and cause a fatal cardiac event. During and / or in between seizures, the part of the brain that controls heartbeat can be affected to the extent that an abnormal heart rhythm develops. It can become so unstable that the heart may suddenly stop beating entirely.

Doctors and neurologists also play a vital role in preventing SUDEP deaths as they are the people who can provide truthful, up-to-date information on epilepsy, and establish a management plan ensuring regular reviews, accuracy of diagnosis, medication, side-effects and impact on lifestyle in order to enhance seizure control. Unfortunately, the syndrome of Sudden Unexpected Death is largely unknown in the medical world, which is potentially very dangerous as it affects the way a patient with epilepsy is treated by his/her doctor, how aggressively the condition might be investigated, and, ultimately, how the patient might approach his/her own epilepsy.

In the U.K. a Government funded report into epilepsy deaths shows that 39% of adult deaths and 59% of deaths in children were potentially avoidable and that short-comings in care may have been a contributory factor. Professor David Fish, Consultant Neurologist at the National Hospital, London, one of the lead authors of the report states: “The report found failures in the provision of care all through the system. This included problems of timely access to expert specialists and a lack of structured and effective review at primary and secondary care. It concluded that poor epilepsy management resulted in a substantial number of potentially avoidable deaths”. The report also found little evidence that the risks of epilepsy had been discussed with patients who subsequently died, or that specialist or doctors made contact with bereaved families to discuss the deaths.

Much of the information here points to doctors and researchers in Britain. It so happens that the UK has a very forward and more complete point of view on E. than does the US. It is a pity that a majority of docs in the US still labor with misunderstandings of E. Telling a patient or that patient's family that there is a significant risk involved with E. might be important for them to know, up front.

Still, perching on one's arrogance, feelings of omnipotence, as a physician, might be the worst thing one can do for an epileptic patient, such as myself. Certainly, telling me I cannot die from E., or that my concerns of E. are all in my head, could be a consequence of either bigotry or ignorance.

The consequence of such ignorance about E., should not be borne by the most vulnerable of us! Nor should it be left for our bereft families to struggle with after we pass on...

How E. Effects Sexuality...

Nothing is more complex than human desire. Nothing is more intimidating than attempting to successfully negotiate the expectations we have of one another that will lead to a happy courtship, either. According to Epilepsy Ontario, "Studies have suggested that men and women with epilepsy experience a disorder of arousal rather than a disorder of desire" This sounds like good news: it says that while we want sex, we may not be charged up for it when the time comes to have it. (www.epilepsyontario.org/client/EO/EOWeb.nsf/web). 

Some of the things that limit persons with E. when it comes to this most intimate of all physical contacts can include:

The stigmatization of the condition of epilepsy can make a person feel self-conscious which can affect self perspective of one's own body and sexual needs.

Restriction of social opportunities or restriction of access to usual educational and occupational experiences is often inflicted unnecessarily upon a person with epilepsy.

Recurrent seizures may lead to a sense of vulnerability and helplessness (poor self-esteem), impairing the capacity to form healthy, nurturing relationships.

Fear that sexual activity will induce a seizure, particularly for persons whose seizures are sometimes triggered by hyperventilation or physical exertion.

Fear of disclosure of your condition to your partner can affect the sexual dynamics of your relationship.

Social and familial stresses due to your sexual orientation, as well as living with epilepsy, may affect your sexual responses and relationships.

In other chronic illnesses, poor acceptance of the condition is associated with sexual dysfunction.

Sexual behaviour may be negatively reinforced if sexual feelings are a component of a seizure.

Disruption of brain regions mediating sexual behavior, either by fixed lesions or by epileptiform discharges

Changes in hormones supporting sexual behavior due to seizures and/or antiepileptic drugs

Antiepileptic drugs have direct effects on brain regions mediating sexuality and may also cause sexual dysfunction by secondary effects on reproductive hormones (http://www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Sexual+Relationships)

We should  understand that as persons with E.,  there are a variety of kinds of obstacles to be overcome, when it comes to intimacy. They are not uniform, nor are they the same for each of us. 

There was a time in the past when we persons with E. were counseled to resign ourselves to the idea that love, sex and intimacy were things we simply could not have for ourselves. From my own experience, I can recall overhearing conversations about whether it was a good idea to give me a Bride's Doll for Christmas... something about not wanting to get my hopes up, only to be let down later. Today, only about 50% of epileptics are married or in long-term, consistent relationships. 

Having E. does not mean foregoing love and desire. But, like everything else, each of us has to recognize how we can balance our condition with our needs.

Something Bubbling Beneath...Physician Frustration!

I know I promised not to get medical on this blog... We each have enough of that in our lives! Still, after writing for a time, I begin to notice that even as I try to write without medicalized references, I am still doing it! I am amazed at the pervasiveness of it and apologize if this has let anyone down.

Still, I mean to point out that there is a subject which bubbles just beneath the surface of our communication with each other: physician frustration, I'll call it. Frustration with the attitude some doctors have towards people with epilepsy. It can include outdated information on epilepsy, bias, or the attitude that unless an individual suffers convulsions, it isn't E.. If a medical professional can't keep up on current information with regards to epilepsy, how can we expect the general population to know the truth about the disorder?

A study of patient attitudes performed at UCLA, concluded:
Patients with intractable epilepsy communicated frustration with their continued disability despite trials of new medications. Their perceptions of the risks of the surgical treatment of epilepsy were exaggerated. Patients felt that their health care providers did not provide adequate information about epilepsy and portrayed epilepsy surgery negatively.

I'd say that's about right. I'd also comment that the education gap frequently leave persons with E. knowing more on the subject of their own illness than the doctors they see. When this is multiplied by ignorance on the part of insurers, the care we need is often denied to us.

My own internist, the one in charge of my general care and the one who reports to my insurers, told me on one of my latest office visits that I might be focused too much on my E.

Her goal at the time was to get me to start taking a statin for my cholesterol. She said that I might be focusing too much on the E. and not enough on a condition that could kill me (the cholesterol). I have to admit I am considering finding a new internist... one with better insight into E.. Apparently, she isn't listening to anything I have to tell her about E. and she hasn't kept abreast of research on E. either. And clearly, she is blissfully unaware of SUDEP...

Now, my insurers are a wholly different matter. In an effort to contain costs, they seem willfully disinterested in allowing the tests and doctor visits with specialists necessary for the maintenance of my condition. When I pushed to know why I was denied, I discovered that the individual making the decisions about my care was a former OB/GYN nurse. At least she was a nurse, right?

In some cases, the individual deciding whether or not to grant referrals for care is a kid, just out of college, whose only reference is a set of company policy manuals.

It can be fatiguing, this consistent struggle for care.

When I began experiencing "new" activity, recently, coupled with the beginnings of depression, I felt it was an urgent situation that required the attention of a specialist in E. My insurer disagreed. It was like moving a mountain to finally get an approval for a visit with an epileptoligist, and in the end, the insurer refused to pay their part. Fortunately, the urgent appearance of new symptoms was corrected by an alteration in my meds and I have been good since, but I was very unhappy with the insurance outcome.

I know I am not the only person struggling with this kind of situation, or if I am, someone please let me know how to rectify it!?

We Might Be Myshkin!!!

The Idiot

BY FYODOR DOSTOEVSKY, 1869

 Prince Myshkin is returning to Russia from Switzerland, where he has been living for more than four years, for medical reasons, at the beginning of The Idiot. “His eyes were large and pale blue, and their intent gaze held at once something gentle and saturnine, filled as they were with that odd expression by which some people can detect epilepsy at a glance.” Later, Dostoevsky describes Myshkin about to be attacked by a man with a knife:

Then all at once everything seemed to open up before him: an extraordinary inner light flooded his soul. That instant lasted, perhaps, half a second, yet he clearly and consciously remembered the beginning, the first sound of a dreadful scream which burst from his chest of its own accord and which no effort of his could have suppressed. Then conscious­ness was extinguished instantly and total darkness came upon him.

He had suffered an epileptic fit, the first for a very long time. As is well known, attacks of epilepsy, the notorious falling sickness, occur instantaneously. In that one instant the face suddenly becomes horribly contorted, especially the eyes. Spasms and convulsions rack the entire body and all the facial features. A fright ful, unimaginable scream, quite unlike anything else, bursts from the chest.

The fit saves Myshkin’s life. Unnerved by the sight of his convulsions, the attacker flees.

Myshkin’s epilepsy is both a medical problem and a metaphor for the innocence that sets him apart, an otherworldliness that contrasts with the competitiveness and materialism of the people around him. This is consistent with the sense of transcendence that often affects people (like Dostoevsky himself) who have temporal lobe epilepsy:

Amid the sadness, spiritual darkness and oppression, there were moments when his brain seemed to flare up momentarily and all his vital forces tense themselves at once in an extraordinary surge. The sensation of being alive and self-aware increased almost tenfold...His mind and heart were bathed in an extraordinary illumination...all his doubts and anxieties seemed to be instantly reconciled and resolved into a lofty serenity, filled with pure, harmonious gladness and hope... with the consciousness of the ultimate cause of all things.

Unfortunately, these moments “were merely the prelude to that final second (never more than a second) which marked the onset of the actual fit.”

Born in 1821, Dostoevsky became linked with the forces of political reform in Russia. He and a group of friends were arrested for political activity, tried, and sentenced to death. In a dreadful charade, as he was about to be executed, the sentence was commuted and he was sent to prison in Siberia. There he experienced his first epileptic seizure. Although he was a Russian nationalist, he left Russia for Europe in 1868 and there wrote The Idiot to help pay off his gambling debts. Dostoevsky’s own epilepsy was particularly acute as he was writing the novel ("Madness in Good Company: Great Literary Portrayals of Brain Disorders"  By Marcia Clendenen, and Dick Riley, 2007).

This book,  The Idiot,  was a revelation to me. I have been a reader of Dostoevsky since my teens, and this is the single book of his I have missed reading, until this year. It is perhaps the finest description of TLE I have ever come across. While the flaws related to the book have to do with other people's interpretations, i.e. "innocence", "Christ-like", etc., the whole of the tale rang very loud bells for me.  

To my own experience, the "innocence" described by critics of the book is symptomatic of a kind of  naivete that presents itself in the personality of the TLE sufferer. "Innocence" strikes me as a kind of willed state, while naivete is no more an act of will than is the E. itself, but it is present, nevertheless. 

I admit identifying with Prince Myshkin. 

I am happy to identify with him, and with Dostoevsky. 

Afterall, I might be Myshkin!!!