How I Learned to Live with Epilepsy
NOW I AND MY DIAGNOSIS IS "EPILEPSY", ONE MIGHT SAY, BECAME FRIENDS. It’s like we were just Dating before, and now we realize we’re serious, and we’re moving in together. I wasn’t going to live with epilepsy before, but I’m studying now. It imposes on my daily routine are not so irreconcilable restrictions, but they are still depressing. Sometimes there is a feeling as if you have planned a busy weekend with friends, and you, as a child, are driven home ahead of time — only you are already an adult. We are very different: I am a moderate, love to do everything as if tomorrow is the end of the world, to have fun spontaneously, to shed hundreds of cubic meters of water in conversation till the morning and not have the regime of the day, and she lives on the clock, very consistent, prudent and don’t miss the last train in the subway just because “have long argued about the category abstract.” It is boring, in General.
For a long time I was not ready to let her into my life, to reckon with her rules and conditions, to listen to whether she has small muscle twitches — because if they are, it is better to turn off the bench and go to sleep. She is my complete opposite, but I have to reckon with her, because it just so happened that it depends on the quality of my life and she herself as a whole.
If we discard all the existential implications of what is happening to me, then two and a half years ago I had the first epileptic seizure. Me on the very moment was 22 year — life only on-Chi-naet-Xia! Up to this point, there were no “convulsive messengers” in my life. But one day in may (really may) I left my apartment in the house of Narkomfin in Moscow, took ten steps and fell right next to the American Embassy. As it turned out later, I lay there for about two hours. The first thing I remember-I woke up in the ambulance, next to some people holding my hand and speak English. They were the American Baptists, and at parting presented me with a “Holly Bible”. I then strongly did not understand what happened to me, why my tongue and cheek are bitten, and the body is ready to fall under its own muscle weight. This has never happened to me. I got off with a few bruises and a little fright. To the nurse’s question: “do you have epilepsy?“- confidently replied: “No” – and signed a waiver of emergency hospitalization. Then I have a few hours unconsciously wandered around the city — little did I know that after the seizure is immediately restored normal memory and adequate perception of reality. When I came to myself, alas, did not attach much importance to what had happened. Well, sometimes. Probably…
I really do not understand why I have a bit tongue and cheek…
That attack was the opening number in the concert, which, as I now know, promises to be delayed for the rest of my life. Now our agreement with epilepsy is that I drink 4 tablets a day — so much is needed that I was not knocked down by the discharge of another seizure. No longer stand in the subway at the edge of the platform, stay away from the water, and if you want, it is unlikely to be able to become a surgeon or a hairdresser due to accidental twitching limbs. It is necessary to treat teeth only in clinics at which there is an ambulance crew as anesthesia can provoke a seizure. I carry with me a special card with a warning that I have epilepsy, what to do if I have an “episode”, my address, phone number of the doctor and relatives. Besides, I can’t afford a glass of wine and a party until the morning: alcohol and sleepless nights are the main triggers of seizures. The biggest disappointment is that I can no longer work at night — writing at this time of day was the most productive for me. I can be said to be a kind of unwitting Zookeeper. I even learned to have Breakfast stably-I feel like in a sanatorium. As soon as I Wake up, you need to drink the first two pills, and if you do it on an empty stomach, then vomit. Plus, next I throw a folic acid pill – to keep in order my female reproductive system, which is sad from the shock dose of antiepileptic drugs.
When the news about my disease left the circle of close friends, many of my environment, with whom I had a tense relationship, happily concluded: “Crazy epileptic.” And blamed all of our problems in understanding my character, allegedly burdened by the disease. Subsequently, even my relatives exploited my diagnosis in family debates-there is nothing worse than condescending: “Well, you’re not healthy.” It is very important to be in itself a difficult time with their illness not to believe that you will impose on others, even those closest to you. Either to give a hard rebuff, or do not care, as I did: if someone is convenient to write me off to “crazy epileptics”, they are all very welcome.
However, indeed, often with epilepsy there are profound changes in personality-in psychiatry, even there is the concept of epileptoid type. Among his qualities: anxiety, tension, authoritarian, meticulous, petty accuracy, pedantry. But, no matter how desirable that some of my friends, my type of epilepsy another accentuation of character — indeed, it sounds almost diametrically opposed. As a rule, on the part of the psyche, these are characterological features by the type of inconstancy, superficiality, insufficient criticality, underestimation of the disease. I will not hide, part of the above is really about me, and when I read about it, it plunged me into amazement, there was a feeling that everything was prepared in advance. It is good that these thoughts quickly passed: I do not want to think that I am my disease. And that it decides who I was, and who is not, a person of quality, and warehouse. The whole picture of me, as I tell myself, is much bigger than this little spasmodic piece. I do have to visit a psychiatrist from time to time, but more in order to record whether the side effects of the drugs I take are known about themselves.
About what you in fact, despite taking medications, you can die if a seizure happens in the wrong circumstances, it is better not to think — though to cheat yourself. But, at worst, and the notorious brick can be afraid. The surest thing a person with epilepsy can do is play by its rules and follow, however sickly it may sound, the regime. Epilepsy does not like “but” or “now available”. Not today, not in a month. For a while I felt on a leash: I want to sit up after midnight with friends, just! the leash tightens. “Want, and cannot be” happens often. The first time this irks, and then animal fear for their lives forces humbly to submit to the established disease order. I remember how I did not want to start taking drugs — not only because life-long pills create a feeling of inferiority. Largely due to severe side effects – from suicidal intentions to diarrhea. I thought the pills would interfere with my brain and I’d turn into someone else. Someone I might not even like. Then I realized that the choice is small: either my brain works under such conditions and tries to cope with them, or runs the risk of just turning off the next unsuccessful fall. Everything else is the little things of life.
After I started taking medications and adjusted my lifestyle, I realized that, as always, I was too dramatic: I tolerate pills well, and the regularity that appeared in my everyday life because of epilepsy, even on my hand. I didn’t know that when you go to bed and Wake up around the same time, you feel so much better. My biological clock is gleeful. In addition, with the pills, I lost a mini-seizures, which I will discuss later, it is they, and not my character was brought into my life the destructive power of confusion. I still don’t want to think I’m my disease.
My forced friend in life was breathing me in the back two-and-a-half years, persistently kept sending me warning bells, but I was flying in the clouds, thinking that it’s not all about me. It is amazing how the desire to ignore the problem can stifle all the arguments of reason and relative savvy in medical matters. I was ashamed to say now that I was hoping that the seizures would go away as suddenly as they started, that it wasn’t about me, that I was just too tired — stress and all that. Alas, I am characterized by an amazing frivolity and carelessness when it comes to the subjunctive mood — about what has not happened yet, but only can.
After the first attack I googled epilepsy on the Internet, strongly doubted that it everything about me and safely forgot about everything. Two months later it happened again. Home already. I had three levels with stairs in my apartment — not the best daily scenery for a potential epileptic fit, especially when living alone. I fell down the stairs. But here I was lucky! As usual, I bit my cheek and tongue, but no more — so, a couple of abrasions on the elbows. Maybe that’s why I still didn’t take what was happening to me seriously. Although they should. After all that time, after an attack, I on the machine, without realizing myself, at first wrote the text which had to hand over to the editor, then went to a supermarket. In reality I was back then, when “barricade” the guard grimaced in disgust at the sight of me with the words: “Che, on the side walk and *** got?” When I returned home, I realized that I had dried blood on my mouth, chin and neck. Then called the editor in disbelief — the text I sent doesn’t make sense.
I didn’t believe that I had epilepsy with all the usual stubbornness. And Russian medicine helped me a lot in this…
My big mistake was his own infantilism in relation to the seizures. Then, when it was necessary to throw all the forces, opportunities and time to thoroughly investigate what happened to me, I lazily lamented: “only epilepsy I still lacked!”When this disease begins in childhood or at least adolescence, it is easier to get along with it, to get used to its costs, it can be said, becomes part of your personality, and when you are 22, it is difficult to suddenly take and begin to refract your life from the angle of taboos imposed by epilepsy. Yeah, well, it’s hard to accept the fact that you’re now a lifetime will depend on drugs that can not be missed under the threat of a seizure on the background of withdrawal syndrome.
I was counting on at least a couple of years of carefree youth: received a diploma of journalism, 0.3 diploma translator, got a job with a “very competitive” salary and to anything not binding schedule, no longer dependent on parents or there is someone else, finished the repair in the apartment, which does not even live, and dream, unhooked the tug from the outdated relationship, dyed her hair in ash color, got a tattoo on half of the back, traveled, did nonsense-in General, tried, as bequeathed to “Sprite” (in my case with gene), take everything from life. It seemed to me, well, finally, it was my time to take a little steam in outer space — everything is arranged and adjusted for life, which I wanted since school years. When, they say, sorry,but like nothing anyone should not. And then you’re like, “ Hey, I’m epileptic, and I’ll live with you.” Know the feeling, when he released a new episode of your favorite series, you came home, I made myself a simple eatables, sat comfortably and softly, put the phone on silent mode, watched five minutes, and then with the Internet problems, it is necessary first to load the short clips. Like the look, but the mood is not that high, so to speak, is broken.
Therefore, in the fact that I have epilepsy and it’s forever, I didn’t believe all my stubbornness and clinging to any chance “not epilepsy“. By the way, Russian medicine helped me a lot in this. After the second seizure, friends, family and a loved one forced me to run a hospital marathon. First, I went to the state clinic, where I was sent to the neurologist KS, who knocked my joints and said that strange, they say, in adulthood, epilepsy does not begin. “Yes, Yes, it does not begin,” I rejoiced inside with hope. Then we had a dialogue like this: “was there Urination?— What kind of urination?- Did you have a seizure?- “Uh, no.” — “Hmm, well then I don’t know what to do with you, and what have epilepsy, too, don’t know.”
Then they started passing me around like a red banner, all kinds of neuroscientists. I was very uncomfortable with the patient: the doctors did not know what diagnosis to make, but nobody wanted to take responsibility — suddenly something would happen to me. Good I have was private.
insurance from the publishing house where I worked, and it’s time. Really great weather it did not. As a rule, I was sent to the same doctors in public hospitals, but in private. I passed the examination by particular specialists, epileptology (them in Moscow on the fingers), and neurologists with a broad specialization. It is worth saying that epilepsy, like all diseases associated with the work of the brain, studied little and bad, and all diagnoses begin with uncertain “and let’s try.” So, for example, in Sechenovka I was offered to try to be treated for two years with a drug with such a degree of toxicity that every three months I would have to take liver samples. And promised that in two years at me there will come a remission and I “still I give birth to children“. Although now I know that in my case it is impossible to cure. Other doctors hypothesized that I was having seizures on the background of the “squirrel” — well, think of it, delirium tremens in the presence of alcoholism at the age of 22.
The ambulance treated me like a drug addict with an overdose.
In Pirogovka, the head of the neurological Department decided that I was too much nervous and my body “as if turns itself off” — and prescribed me a horse dose of tranquilizers. He also added that he takes them to better put up with working days. Then I decided to hear an alternative opinion from his colleagues, who said that, say, sweetie-sweetie, you have a lot of “house” looked, how do you know what is epilepsy? “You didn’t see the seizure yourself.” Sorry, no, I didn’t — I was unconscious.
Then I checked the young doctor-a neurologist with a rich imagination for mitochondrial encephalopathy — all clear. Like all other examinations-MRI, EEG. There was also a brain tumor in question-they say, it happens that malignant tumors press on certain areas in the brain, which provokes convulsions. But, it turned out, with head I have in this sense all in order. As I said, doctors with a shrug, in accordance with the tests conducted I’m a healthy person. I was beginning to think I had lupus. By the way, no drugs, these two and a half years I accept not all diagnoses was like a joke when a pensioner dying chickens, she goes every day to the magician-healer, he from time to time gives her a guide to action, like draw a black circle and hang it in the henhouse and so on. Eventually all living creatures die, and the magician-healer concludes with a sigh: “Sorry, but I have so many ideas.”
Special attention should be paid to the actions, or rather, their complete absence, random witnesses of the seizure. People suffering from epilepsy know many stories about how indifferent others can be. So, that one girl M. has fallen the face of in a deep a puddle and choked on it. I was lucky-almost always with me there were very close people who did everything that they depend on them that attack didn’t end for me fatally. In those times when I was lucky less, the ambulance made out me as a drug addict with an overdose — alas, not only passers-by, but also medical workers take foam from the mouth and convulsions not for epilepsy. By the way, when I was brought to the hospital, despite all the assurances about epilepsy, put a dropper for detoxification.
Worse of doctor’s visits was only surfing the forums and medical sites. About what I only had read: about permanent personality changes on the background of epilepsy, and about mental disorders, about the gradual development of dementia (one friend even tried to cheer up, they say, fall will be long), about the outbreak of aggression. I was almost ready to put on a straitjacket myself, until one kind person, thank him very much, twirled his finger at his temple and said that in the Russian — language Internet it is better not to look for anything on such topics-and switched me to British and American sources. Although it also did not help the situation — self diagnosis made me even more wilds.
Quite by chance, through working contacts, I once met Olga-a girl in her early thirties with epilepsy, diagnosed in childhood. Of course, I told her about my epic with seizures. Olga did not undertake to diagnose me, but with a sigh advised: “you should Dress, of course, in a different way. Well, presentable or something, solid… To such on the street always suited and all. Really, my appearance very much alienated me from the public — those times when I fell on the street, lay there unconscious for several hours. But the fact of the presence in visible areas of my body tattoos called disdainfully remarks, even by medical personnel.
I remember how the nurse in the Department, where I was taken, looked at me and bitterly threw: “Collect all the trash, and you with them to hang around here. Another girl called on my forehead a nothing to impale you do not want?” Even some doctors, whose profession, as it seemed to me, implies immune to all anti-scientific bullshit, it was proposed that when my seizures with a tattoo: “Well, there you have on the back of this, well, drawing, passes through the spine… It’s all connected, you don’t know where what goes around comes around“. Needless to say about the Philistine attitude to epilepsy. I’ve had to answer the most ridiculous questions since, “Isn’t that contagious?”to “is this not treated in a mental hospital?“. I was also advised to go to Church, because I “played out”and” a man does not fall out so easy test.”
Perhaps, I would have hoped that everything would be solved by itself, listened to ridiculous diagnoses and assumptions of doctors, but epilepsy, apparently, realized how hard it is for me to get everything, and decided to act categorically — literally poke my face into what is happening to me. I don’t remember very well that morning because every seizure I have is related to amnesia. I got out of bed, went to the bathroom. That’s it. Subsequent, very vague memories — as I’m lying in a hospital room, feels bandaged head, next to her husband, blood is taken from the vein. It’s like I’m stuck between dream and reality. Husband know, notice that he’s got some red eyes, asked are you awake? He covers his face with his hands. Answer on slot machine a doctor speak English and understand, that I in Britain. The next half hour hard restore memory data and the events of recent months: so, I’m Dasha, I’m a journalist, I used to live in Moscow, then moved to London, so why else was thinking Bali, Oh Yes, I was in Bali… Then again sinking into a heavy sleep, as if sucking the last remnants of consciousness.
Wake up again. My memory’s still shattered, but at least I realize something’s happened to me. I ask my husband, K., to tell, I start to get nervous, I get scared, I try to feel my body for damage. Terrible headache. The rest seems intact. My husband tells me I had a seizure. I’m even more nervous-thoughts stop, memories are fragmented, and the monitors because of the seizure I have not connected. I’m trying my best to make a simple self-identification, but my head is a mess. I can’t realize my own identity, and it’s terrifying.
I black out again. See the doctor, himself laughing at his funny hair he kept very professional. Explains to me that I need to close the wound as soon as possible. What kind of wound? Where? It turns out that in addition to severe contusions to the head, I fell onto a corner of the plinth face. I have a dissected eyebrow and eyelid and a damaged facial nerve.
Every seizure I have is related to amnesia.
It was only three days later that I finally came to my senses, and the fact that I could constructively recall almost everything that I wanted brought me wild delight. And then came the wild horror, which was supposed to come after the very first attack, but, apparently, the instinct of self — preservation I have developed poorly-I, as if by the way, realized that each of my previous attacks could end in the best case as well. Half-closed eyes with blue-and-red bruise, swelling on face, the stitches — seven stitches that draw the edges of the wound. So a picture. But this reminder of myself, which epilepsy left on my face for life, very sobered me up. Animal fear chanted: “Treat, can not be postponed!»
I spent the next few days in prescribed bed rest and thinking about how it came to this and how I could behave so stupidly and not do everything to get the medical care I needed. Belated realization that it was necessary to give up everything and to be engaged in own health. That need to was to visit not ten doctors, and a hundred, two hundred. Here, of course, a lot of things we can say that, when day after day we rush headlong over something conditionally conditionally important and interesting remains around only blurry picture, which will quickly destroy even the obvious problems at the expense of low resolution. Still it was hard for me to accept the fact that I can’t deal with the problem itself, I don’t have these inner reserves, I used to take life’s troubles with the gaming excitement of the test of strength.
Another reason is that society is constantly poking at you, that there are people who are heavier than you. That you, they say, sit and be glad that you do not have cancer. I have heard it many times from a variety of people, including doctors. The idea itself is quite wild — how can you feel relief from the realization that someone is even worse? If you are trying to make to be ashamed right to feel sorry for yourself: you have to bite the bullet and “sit and enjoy”. And worst of all, I like this position was only on hand is another option with a clear conscience not to admit the obvious. A fly in the ointment that I thought was my own life.
At the time of my last seizure, I had already moved to London. I managed to get acquainted with the local medicine and continue the examination. Although it is not very hard to believe that I will put the final diagnosis. But everything was decided quickly: I was diagnosed with juvenile myoclonic epilepsy, and also denied everything that I had heard in Russia. It was indecently fast compared to how long I had been struggling with it. The epileptologist O’dwyer interviewed not only me in detail, but also my husband, who witnessed the seizure. Answered all my questions and resolutely dispelled every doubt.
As I learned, there are more than 40 types of epilepsy with completely different dynamics of development, and yet there are global standards for the diagnosis of epilepsy, which Russia does not support. Also, perhaps, difficulties with the diagnosis in Russia arose also because my type of epilepsy occurs in 10% of all world cases. In my case, firstly, there is no concept of childhood, in which epilepsy allegedly begins — the disease can manifest itself up to 25 years. Secondly, the lack of urination-also not an argument for refuting epilepsy.
That in two years it is possible to achieve remission as promised to me in Sechenovka, too in my case a lie. Drugs will have to take a lifetime, but this is not a guarantee that seizures will not happen from time to time. The fact that all the tests and examinations that I had in Moscow, were “clean” — a consequence of the fact that epilepsy is difficult to catch on the monitors. Pregnancy in the next couple of years, I also better not plan. I can not say that I planned, but the remark was important, because even in this case I will not be able to cancel the drug — and here the question arises about the danger to the fetus. But this is another decision that I have yet to make.
Turns out I’ve been sick my whole life.
To 22 years body could no longer resist and seizures from micropiston into a fully-fledged
Most of all in conversation with Dr. O’dwyer me, of course, struck his confidence in the diagnosis — categorical confidence. I don’t know how many times I asked him if he was sure, but every time the answer was, “Yes, I’m absolutely sure you have juvenile myoclonic epilepsy.” Then he quoted me a dozen studies, gave statistics. We talked for about an hour — and I understood. I finally realized I had juvenile myoclonic epilepsy. When he told me how the disease proceeds, I had goosebumps — I recognized myself. It turns out that with my type of epilepsy, serious seizures appear only with the course of the disease, before that there are mini-attacks that most people do not notice. When a sudden twitch of the hand or body shudders dramatically. After that, there is usually confusion, confusion. It haunted me all my life: it happened as if I fell out of reality, and then for a long time could not concentrate. She froze, clapped her eyes and looked somewhere in the distance. I used to write it off as information overload.
As for the sharp twitching of the limbs, my friends and I have always considered me the most clumsy person. How many Puranic suddenly fell from my hands and crashed — so generally it is terrible to remember. Even at school, no matter how calligraphic handwriting I wrote, I was often downgraded for blots-sudden strokes in the middle of dictations and homework. And after all, it turns out, I was sick, consider, all life. By age 22, my body just couldn’t resist and seizures from micropiston into a fully-fledged. It was a revelation to me. Other details of my, not afraid of this word, fateful meeting with Dr. O’dwyer I am ready to share with all who will find this information useful. For example, he said that I can afford one or two cocktails, but for me it will be worse than any drug-alcohol has the highest toxicity. In parting with the doctor, I joked: “I Hope I will not have a tendency to detail…” Dr. O’dwyer responded instantly: “Do not worry, you and Mr. Dostoevsky different types of epilepsy.” After I left Dr. O’dwyer, I cried.
On the eve of the start of the drug, which I prescribed Dr. O’dwyer (“Levetiracetam”, in Russia in the registration stage) I had an attack, which I described above. In the bathroom. Its consequences you can see in the photo, five days later. Now imagine how much harder they would have been if a seizure had occurred in a more traumatic environment than a private bathroom. For example, near the water. Or the edge of the platform. They do not die from an epileptic seizure, but from assistance not provided in time. I do not know what would have happened if I had not been near my loved one who stopped the blood, turned me on my side, so I did not choke in the foam from my mouth mixed with blood, called the doctors, who tried hard, so that I eventually opened my eye and was able to move my eyebrow. By the way, this “person nearby” for hundreds of others suffering from epilepsy may well be you. With an epileptic seizure, a person falls sharply, after which his body begins to shake convulsions, he can make strange sounds, and breathing usually stops — this can scare. But it is very important to find strength and help: the most important thing is to hold your head during a seizure. On whether you will make these simple manipulations, life will depend-let not yours, but from it not less unique and not less unique