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.