Hilda Reilly
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The Strange case of christina the astonishing

27/7/2015

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Few of the many saints who are now believed to have suffered from mental or neurological disorders can have displayed behaviour as florid as that claimed for Christina the Astonishing.

Christina’s story was saved for posterity by the 13th century monk, Thomas de Cantimpre. Writing almost a century after events, he can hardly be considered a reliable source and indeed, some of the events in question would beggar belief.

Christina was born in Belgium in 1150. Orphaned at fifteen she was sent up into the hills as a shepherd where she spent long periods alone and communing with God who, Cantimpre tells us, ‘very often visited her with heavenly secrets’.

Six years later she apparently passed away. According to Cantimpre, ‘she grew sick in body by virtue of the exercise of inward contemplation and she died’. During her requiem mass the next day her coffin lid sprang open and Christina herself flew out, ascending to the rafters of the church, remaining there until coaxed down by the priest at the end of the mass. Questioned as to what had been going on, she claimed that she had visited Purgatory, where she recognised many familiar faces, and then Heaven, where God gave her the choice of remaining there with Him or returning to earth to suffer and ‘by these sufferings to deliver all those souls on whom you had compassion in that place of purgatory’.

Taking the altruistic option she came back to earth, spending the next fifty-odd years battered and buffeted by a variety of bizarre experiences. She was particularly afflicted by what she believed to be the stench of human sin, an odour she found so disagreeable that, to escape it, she would leap into treetops or inside hot ovens from which she later emerged unscathed. In feats of endurance surpassing by far even those of David Blaine she would ‘roll around and around in fire’ or ‘linger in icy water’.

Cantimpre also describes what would appear to be grand mal attacks: ‘.... suddenly and unexpectedly she would be ravished in spirit and her body would roll and whirl around like a hoop.  ..... When she had whirled around for a long time in this manner, it seemed as if she became weakened by the violence of her rolling and her limbs grew quiet .... then after a time restored to her former self she rose up like one who was drunk.’ During these fits she believed herself to descend into purgatory where she took upon herself the torture being inflicted on the souls there to give them some respite.  

The ‘stench’ which Christina experienced could be another indication of pathology, unpleasant olfactory auras often being a result of simple partial seizure. Baxendale* suggests that the ‘death’ Christina experienced in her early twenties could have been a prolonged period of status epilepticus. This, along with concomitant respiratory compromise, cardiac arrhythmias and profound post-ictal coma could have precipitated the seizures which affected her for the rest of her life.

Historically individuals with similar symptomatologies were either revered as saints or hounded as being possessed by demons. Christina seems to have straddled those two categories, experiencing both divine visions and demonic torment. Contemporary opinion about her was divided and the Church, despite its penchant for masochist activities on the part of its holy men and women, has never promoted her life as an example of piety to be emulated.

Although never canonised, Christina is included in Butler’s Lives of the Saints and is regarded by some as the patron saint of mental illness.

Her story is told in this powerful and haunting song by Nick Cave. 


*Baxendale, S; (2008) The intriguing case of Christina the Astonishing. NEUROLOGY , 70 (21) 2004 - 2007. 

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grated skull, cow urine and gladiator liver

18/2/2015

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Folk remedies often turn out to have been scientifically sound; the histories of aspirin and quinine are just two examples. But it’s difficult to see how some of the supposed cures for epilepsy could ever have been trusted, or indeed willingly endured, by the unfortunate patient.

A number of them are associated with blood, guts and death – the more gruesome the better. Hans Christian Andersen reports seeing parents forcing their epileptic children to drink the blood spouting from the necks of beheaded criminals in the belief that they would thereby be healed. In Roman times epileptics were offered pieces of liver cut from the bodies of stabbed gladiators. In Celtic regions, the treatment of choice was grated skull from a person of the opposite sex. In Scotland the water from a well in Wester Ross was recommended, provided it was drunk from the skull of a suicide.

A particularly elaborate remedy, which sounds like a recipe from the witches of Macbeth, advised epileptics to drink blood obtained from an incision in their left foot, then to make up a number of parcels containing their toe and finger nail clippings, along with some hairs from their eyebrows and moustaches. These parcels were to be buried along with the knots from a rope which had been laid out in the form of a cross, while at the spot where the first fit took place a black cock was interred. The final step was for the patient to drink water from a human skull.

Equally unsavoury were eating food mixed with menstrual blood, pouring cow urine into the ear, and drinking water used to wash a corpse. An emergency measure to be adopted while a fit was in progress was to pass a worm macerated in alcohol down the patient’s throat and pull it out again.

Some remedies depended on circumstances whose appearance seems so unlikely as to be almost impossible – for example, two pieces of coal from under the roots of a red wormwood plant, one of which was to be eaten, the other worn round the neck? How many wormwood plants would one have to unearth before finding two pieces of coal nestling underneath?

Some measures were prophylactic: an amulet made from the backbone of a rattlesnake, a medal made from coffin handles, a piece of rope which had been used by someone to hang himself. For babies, lifelong protection was guaranteed by rubbing it with a newly-born pig. At last we can see a glimmer of reasoning perhaps. Could this have been based on the incident with Christ and the Gadarene swine?

Natural and herbal remedies abound. A popular one was mistletoe, the rationale for this being that, as it clings to the tops of trees, never falling to the ground, it would surely provide protection against the ‘falling sickness’.

Yet, as with aspirin and quinine, it seems that one of those remedies may be scientifically sound after all. The root of the delphinium denudatum, which grows in the Himalayas and has been used for centuries by people in the area to control seizures, is currently being researched by Canadian neuroscientist Michael Poulter. It is, says Poulter, the most promising agent he has studied so far. Given that around 30% of epileptics are resistant to the drugs currently available this space will be eagerly watched. 


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surviving wonderland

11/2/2015

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For my first post on this blog about temporal lobe epilepsy I’m going straight to the horse’s mouth to talk with someone who has personal experience of the condition. Sharon Powell, an American living in Texas, has written a book about her own case – Surviving Wonderland. For many years she successfully combined her role as wife and mother with a high-flying career in medical information management until TLE forced her into early retirement. Here she describes her symptoms, the impact they had on her work and her relationships, and the struggle she had in getting properly diagnosed and treated.  Now over to Sharon. 


Thank you so much for talking to us, Sharon. Could you tell us when you first became aware that all was not well with you?

I first became aware of a problem in first grade. I started hearing voices, particularly around tests or group activities when I would normally have been nervous. This one time they became so distracting that I snapped my pencil in half. The principal called my parents in and they decided it was test anxiety.
I knew from that point on that it was up to me to cover up "my stuff" so to speak. I didn't know what was wrong with me. I was afraid I was defective in some way. I did a good job of developing coping mechanisms until my late teen and college years when I was exposed to more triggers. Again I had to make adjustments.

What kind of symptoms were you having then?

At this stage I was having simple seizures with no loss of consciousness. I would hear or see things, get very sick at my stomach, smell strange odors, have horrible headaches and mental changes such as confusion, circular thinking and irritability.
I was in my mid 40's when the more serious symptoms began to emerge. This, according to my first neurologist, was due to the high stress lifestyle I was leading – up to 15 hours a day on the computer, flying all over the country, deadline stress and exposure to fluorescent lighting for hours at a time. The impact on my life at this point was huge and I realized that I would no longer be able to conceal what was happening to me. Worse yet, I didn't care.

Could you describe how this affected your life? How did your family react?

 It isn’t easy to describe the effect that my TLE had/has on others. If you are uninformed about the neurological aspect of my condition, it would be easy to attribute it to some form of mental illness. This is exactly what has happened from time to time in my life. My family though, is thankfully made of stronger stuff.
When I began to change from the dedicated mother/worker/wife into someone who was distant, closed up and prone to emotional outbursts it was hard for them. I could spend hours talking about how I felt enclosed in glass, unable to communicate at times while they felt unloved and angry at my lack of responsiveness. I was living a hell inside as the simple seizures were becoming frightening. On the outside I was passive or angry, many times not making any sense when I did try to reach out.
What saved me and my relationship with my family was my separation from them for two years. I left because I wanted to be alone. I couldn't deal with my issues and the family at the same time. It sounds cruel. You would have to have been there in my skin to understand. Once my husband found out the true diagnosis, which was made shortly after I left, he began to work to make me feel safe and loved so I would decide to come home. He had struggled for many years to figure out just what was going on with me. Now that he knew he dove into research and worked hard not only to understand it but to help me live with it. He is an extraordinary person as are my two daughters who have worked through their own feelings of abandonment to arrive at a loving relationship with me now.
Our family now operates on a level of honesty that would be considered brutal by others. This honesty is necessary in order to catch the beginnings of seizure cycles and the distorted thinking and the confusion that accompanies them.

 And how about friends?

I have a couple of really close friends who have stood by me and have been supportive through all the issues that I have dealt with in the last 10 years. I had others that simply fell by the wayside. This is fine with me. It is like any other disease in that when you are friends with someone who has it you either enter in or you fade out. It has to become part of that relationship because it is overwhelming at times for the person who has TLE. To expect them to act as if there is nothing wrong is unrealistic.

You’ve mentioned the pressures of your career, which were likely to exacerbate your symptoms. Did this have any fall-out on your working relationships?

 I worked in a very competitive environment where colleagues were not friends. Your worth was your knowledge and what you could do for the other person. When I ceased to work, I lost touch with all those people for the simple reason that I no longer had anything to offer. That does not bother me. I understood this while I was in the job. Unlike my friends, I doubt any colleagues were aware of what was going on within me until the very last.
I did have one boss that knew what I had, and understood it. His wife had a neurological condition that was never disclosed to me. He worked very hard to make me feel normal and to help me relax. Sometimes when I would get in a seizure state while working on pages of statistics, he would have me sit in his office and gently go over my work until I returned to normal and could provide him with the answers. He said he did it because my work was really good when I was OK.  I think he did it because he was a good human being and he somehow understood.

How long did it take for you to be diagnosed with temporal lobe epilepsy?

The time frame of searching for an answer would probably stretch from 1967 to 2005, which is 38 years. When I was in my late teens, a family member, who was a psychiatrist, diagnosed me with hysteria. Actually it was never a true diagnosis as he never sat down and actually talked with me about my symptoms, nor did he check a medical record or talk with anyone else in the family who could give him accurate observations. At the time I did not realize that because the diagnosis was not treated carefully and respectfully it was worth nothing. That diagnosis sent me to therapists for thirty years looking for what was wrong. Meanwhile I was going to medical doctors trying to treat the physical symptoms. I was creating two separate medical records, two pictures that needed to be merged to actually explain what was going on.
In 2005 a new therapist immediately realized that there was something wrong with me but didn't know what. She sent me to a special doctor who diagnosed difficult cases. At that point I was required to give him all my medical as well as psychological information. When the records were finally merged, an accurate diagnosis appeared.
I think this is a hugely important point. The information for a correct diagnosis with any one individual is probably all there. However things can be overlooked by a doctor who is simply looking for information to support his ideas. It can also be withheld by the patient due to the sensitive nature of the information and fear of how they will appear to the doctor and others.

 And when you’d finally been diagnosed, what changes did this bring about for you?

Once I had the diagnosis I was sent to a neurologist. I was put on a cocktail of anticonvulsants, tranquilizers and narcotics. This sounds excessive but in the beginning I was in intense pain from migraines as well as the aftermath of seizures.
I continued on medication through three more neurologists as I moved home and tried to readjust my life.  During this stage of my treatment, again the entire medical record was not taken into consideration and many of the things I said in visits were dismissed. Then it turned out that I had an autoimmune disease that had gone undiagnosed for years. My internist found the problem. Unfortunately, because of this disease I started to react to my drugs as if they were poison. This is not unusual for autoimmune conditions. It meant that the anticonvulsants made me very sick, enraged and suicidal, all things that shouldn't ever happen.
With the help of my internist, I was able to withdraw from all the drugs over a year or so. This was a really hard period of my life. The neurologist was telling me I could die without the drugs but clearly the drugs were killing me as I was almost in a wheelchair and having thoughts of suicide. Once off the drugs I found that every moment of my life had to be watched so I could figure out how to control the seizures on my own. It took more than three years for my muscles to regain normal strength. Luckily I stopped being suicidal within a month or so of withdrawing from the anticonvulsants. I would not suggest to anyone that they get off their anticonvulsants. What I would say is watch the situation very carefully and record feelings and physical symptoms that appear. I understand that it is easy to overlook a serious warning symptom when the patient wants to please the doctor or simply does not understand what is happening.
I have found that for me, managing the seizures requires a lot of attention and sacrifice. I was scolded on a Facebook entry not long ago when I broke my usual silence on that site to mention that discos had all the triggers. "I live my life without regard to the epilepsy," one man wrote. Well, glad he can do it but I definitely have to know, understand and avoid at all costs the matches that ignite my seizures.
As alternatives I practice yoga daily. It helps calm me, it strengthens me and I believe that it has reduced the number of seizures I experience. I avoid any of my known triggers and to do this I live a very secluded life. I listen to music because it is calming and I listen to audio-books or my husband reading aloud to me because the spoken word seems to calm that area of my brain. I have also found that doing crossword or suduko helps me manage pain, so too does drawing with ink and colored pencils.
I am still looking for the right neurologist who will approach the situation from an all encompassing position rather than seizure eradication through drugs. Sadly the ones I have been to since the drug problem became apparent aren't willing to work with me if I can't take the medication.
 I think therapy with the right person, one who will research the disease to understand it, is beneficial in navigating the complex responses that accompany the seizure cycle. And, regardless of what you do about it, understanding this disease from your own perspective is the most important thing you can do for yourself and those you love.

The full story of Sharon’s experience of temporal lobe epilepsy can be found in Surviving Wonderland: Living with Temporal Lobe Epilepsy, available from Amazon in Kindle.

 

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    hilda reilly

    An exploration of temporal lobe epilepsy

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