How I learned to live with epilepsy
Now I and my diagnosis of "epilepsy" can be said to be friends. It was as if we had just met before, but now we realized that everything was serious with us, and decided to move in. I did not intend to live with epilepsy, but now I am learning. It imposes on my daily routine not such irreconcilable restrictions, but they still induce melancholy. Sometimes it feels as if you plan a busy weekend with friends, and you, like in childhood, are driven home ahead of time - only you are already an adult. We are very different with her: I am a completely not moderate person, I like to do everything, as if tomorrow is the end of the world, to have fun spontaneously, to spill hundreds of cubic meters of water to talk until morning and not to have a daily regimen, but she lives by the clock, very consistent, prudent and he doesn’t miss the last train in the subway just because “they have been arguing about the abstract category for a long time”. Boring she, in general.
for a long time she was not ready to let her into her life, to reckon with her rules and conditions, to listen, if she had small muscle twitches - because if they are, then it is better to turn off the shop and go to sleep. She is my complete opposite, but I must reckon with her,
because it so happened that the quality of my life depends on her and she herself as a whole.
If we discard all existential implications of what is happening to me, then two and a half years ago I had a first epileptic seizure. At that time I was 22 years old - life is only na-chi-na-sa! Up to this point there have been no "convulsive messengers" in my life. But one fine May (indeed May) day I left my apartment in the Narkomfin House in Moscow, took ten steps and fell right next to the American Embassy. As it turned out, I lay there for about two hours. The first thing I remember is that I woke up in an ambulance, some people hold my hand and speak English. They turned out to be American Baptists and, in parting, handed me a Holi Bible. At that time, I absolutely did not understand what had happened to me, why my tongue and cheek were bitten through, and my body was ready to collapse under its own muscular load. This has never happened to me. I got off with a pair of bruises and a slight fright. To the nurse's question: "Do you have epilepsy?" - confidently answered: "No," and signed a waiver of emergency hospitalization. Then for several hours I unconsciously wandered around the city - then I didn’t know that after a seizure, memory and adequate perception of reality did not immediately recover. When I came to my senses, then, alas, I did not attach much importance to what happened. Happenes. Probably…
That attack became the opening number in the concert, which, as I now know, promises to drag on for the rest of my life. Now our persuasion with epilepsy is such that I drink 4 pills a day - so much so that I do not get knocked down the next seizure. I no longer stand on the metro at the edge of the apron; I stay away from the water, and if I want to, I can hardly become a surgeon or a hairdresser due to occasional twitching of limbs. It is necessary to treat teeth only in clinics where there is an ambulance team, 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, the phone of a doctor and relatives. In addition, I can not afford more glasses of wine and parties until the morning: alcohol and sleepless nights are the main triggers of attacks. The biggest disappointment is that I can no longer work at night - writing at this time of day was most productive for me. I can say, a kind of involuntary Zozhovets. I even learned to eat breakfast stably - I feel as if 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, it will make you sick. Plus, I drop off with a folic acid pill - to keep in order my female reproductive system, which is sad from the loading dose of antiepileptic drugs.
When the news about my illness left a circle of close friends, many of my entourage, with whom I had tensions, happily concluded: "Nutty epileptic." And they wrote off all our problems in understanding to my character, supposedly burdened by the disease. Subsequently, even relatives exploited my diagnosis in family debates - there is nothing worse than condescending: "Well, you are not healthy." It is very important in itself a difficult moment of acquaintance with your disease not to believe that others, even the closest ones, will impose on you. Either give a hard rebuff, or give a damn, as I did: if it is convenient for someone to write me off as "crazy epileptic", then they are all very welcome.
However, indeed, often with epilepsy, there are profound personality changes - in psychiatry, even the concept of epileptoid type exists. Among his qualities: excitability, tension, authoritarianism, thoroughness, petty accuracy, pedantry. But, no matter how much my acquaintances want it, my type of epilepsy has a different accentuation of character — moreover, it sounds almost diametrically opposed. As a rule, on the part of the psyche, these are character traits of the type of impermanence, superficiality, insufficient criticality, underestimation of the disease. I will not hide, some of the above are really about me, and when I read about it, it amazed me, there was a feeling that everything was prepared in advance. Well, that these thoughts quickly passed: I do not want to think that I - this is my disease. And that it decides who I should be and who I am not, what kind of quality and warehouse of people. The holistic picture of me, as I say to myself, is much larger than this little jerky piece. I, however, will have to visit a psychiatrist from time to time, but more to record whether the side effects of drugs that I take do not make themselves known.
The fact that you actually, despite taking medications, you can die if the seizure happens in unfortunate circumstances, it is better not to think - although you can wind yourself up. But, at the worst, so the notorious brick can be feared. The surest thing a person with epilepsy can do is play by her rules and follow, no matter how hospital it sounds, the regime. Epilepsy does not like "but" or "today you can." It is impossible - neither today, nor in a month. For a while I felt on a leash: I want to sit up after midnight with friends, like - once! - the leash is stretched. "I want, but not" happens often. At first, this is annoying, and then animal fear for their lives makes meekly submit to the order established by the disease. I remember how I did not want to start taking medications - not only because life-long pills create a feeling of inferiority. Largely due to severe side effects - from suicidal intent to diarrhea. It seemed to me that the pills would interfere with the work of my brain and I would turn into someone else. One who 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 it risks to simply turn off during the next unsuccessful fall. Everything else is the little things in life.
After I started a stable intake of medicines and adjusted my lifestyle, I realized that, as always, I was too dramatized: I take the pills well, and the systematicity that appeared in my everyday life because of epilepsy was good for me. I didn’t know that when you go to bed and wake up at about the same time, you feel so much better. My biological clock is jubilant. In addition, thanks to the pills, I lost mini-seizures, which I will discuss later, it turns out that it was they, and not my character, who brought the destructive power of confusion into my life. But I still would not like to think that I am my disease.
My forced friend for life breathed in my back for two and a half years, persistently sent me warning bells, but I flew in the clouds, thinking that it was all about me. It is surprising how a desire not to notice a problem can stifle all arguments of reason and relative knowledge in medical matters. I am ashamed to admit now that I hoped that the seizures would disappear just as suddenly as they started, that this is not all about me, that I was just too tired - stress and all that. Alas, surprising lightheadedness and carelessness are peculiar to me when it comes to the subjunctive mood — that which has not yet happened, but can only.
After the first seizure, I googled epilepsy on the Internet, strongly doubted that it was all about me and safely forgot about everything. Two months later he happened again. Already home. My apartment had three levels with stairs - not the best daily scenery for a potential epileptic seizure, especially when you live alone. Just down the stairs I fell. But here I was lucky! As usual, I bit my cheek and tongue, but no more - so a couple of elbows abrasions. Perhaps that is why I still did not take what was happening to me seriously. Although worth it. After all, at that time, after the attack, I was on the machine, unaware of myself, first wrote the text, which was supposed to pass the editor, then went to the supermarket. I was brought back to reality when the security guard frowned disgustingly at the "Barrikadnaya" at the sight of me with the words: "Che, I walked on the side and got ***?" When I returned home, I realized that I had dried blood on my mouth, on my chin and then on my neck. Then the editor phoned in bewilderment - the text I sent is completely nonsense.
The fact that I have epilepsy, I did not believe with all the inherent stubbornness. And Russian medicine helped me a lot with this.
My biggest mistake was my own infantilism in relation to seizures. Then, when I had to give up all the strengths, opportunities and time to thoroughly investigate what happened to me, I lazily lamented: "Only epilepsy was not enough for me yet!" When this disease begins in childhood or at least adolescence, it is easier to get along with it, get used to its costs, it can be said to become part of your personality, and when you are 22, it is difficult to suddenly start and refract your life at an angle taboo superimposed by epilepsy. But what’s really there, it’s hard to accept the fact that now you’ll depend all your life on drugs that you shouldn’t miss under the threat of a seizure against the background of the syndrome.
I was counting on at least a couple of years of carefree youth: I received a journalism diploma, 0.3 translator diplomas, got a job with a “very competitive” salary and did not depend on my parents for anything, someone, finished repairs in an apartment in which not even to live, but to dream, unhooked the tug from the outdated relationship, dyed her hair in ashen color, made a tattoo on her back, traveled, did foolish things - in general, she tried as she bequeathed " Sprite "(in my case with gin), b amb everything from life. It seemed to me, well, finally, it was my time to hover a bit in outer space - everything is arranged and adjusted for life, which I wanted from my school years. When, they say, I'm sorry, but nothing seems to owe anyone. And then on you: "Hi, I'm epilepsy, and I will live with you." You know that feeling, when a new episode of your favorite series came out, you came home, built yourself a simple food, sat down more comfortably and softly, put the phone on silent mode, looked for five minutes - and then there was a problem with the Internet, you first have to load it with short excerpts. It seems that you look, but the mood is not the same - the buzz was broken off, so to speak.
Therefore, in the fact that I have epilepsy and this is forever, I did not believe with all the inherent stubbornness in me - and clung to any possibility of "not epilepsy." By the way, Russian medicine helped me a lot with this. After the second seizure, friends, relatives and a loved one made me perform a marathon in hospitals. At first, I turned to a state polyclinic, where I was sent to a neurologist, KS, who tapped my joints and said that epilepsy did not begin as an adult. “Yes, yes, it does not begin,” I rejoiced inside with hope. Then a dialogue like this took place between us: "Was urination?" - "What other urination?" - "Have you written during a seizure?" - "E, no." “Hmm, well, then I don’t know what to do with you, and what’s the cause of epilepsy, I don’t know either.”
From that time on, they began to pass on to each other, like a passing red flag, a variety of neurologists. I was very uncomfortable as a patient: I didn’t know what to make a diagnosis, the doctors didn’t know, but no one wanted to take responsibility - suddenly something happened to me. I had the benefit of private
insurance from the publishing house where I worked - and her time has come. True, this did not make the big weather. As a rule, I was sent to the same doctors in public hospitals, but in private. I was examined by narrow specialists, epileptologists (they were counted on fingers in Moscow), and also by neurologists with a broad specialization. It is worth saying that epilepsy, like all diseases associated with the work of the brain, has been little studied and poorly, and all diagnoses begin with an insecure "but let's try." So, for example, in Sechenovka I was offered to try to undergo treatment for two years with a drug with such a degree of toxicity that I had to take samples of the liver every three months. Moreover, they promised that in two years I will be in remission and I "still give birth to children." Although now I know that in my case healing is impossible. Other doctors have suggested that I have seizures against the background of "squirrels" - well, you think, delirium tremens against the backdrop of alcoholism at 22 years old.
In Pyrogovka, the head of the neurological department decided that I was too nervous and my body “turned off itself, as it were,” and prescribed a horse dose of tranquilizers to me. He also added that he himself accepts them in order to better put up with everyday work. After that, I decided to hear an alternative opinion from his colleague, who stated that, they say, dear darling, you watched a lot of “Dr. House”, how do you even know that this is epilepsy? "You yourself did not see the seizure." Sorry, no, did not see - was unconscious.
Then I was tested by a young neurologist with a rich imagination for mitochondrial encephalopathy - everything is clear. Like all other examinations - MRI, EEG. There was also a brain tumor in question - they say it happens that malignant tumors put pressure on certain areas in the brain, which provoke seizures. But it turned out that everything was in order with my head. As doctors told me, shrugging my shoulders, according to the tests I was done, I am a healthy person. I already started to think that I have lupus. By the way, I didn’t take any drugs for two and a half years and all the diagnoses were like an anecdote, when a pensioner has chickens dying, she goes every day to the healing magician, he gives her a guide to action every once in a while, like draw black circle and hang in the hen house and so on. In the end, all animals die, and the magician-healer with a sigh concludes: "It is a pity, but I still have so many ideas."
Separate attention is deserved by the actions, or rather, their complete absence, by accidental witnesses of a seizure. People suffering from epilepsy know many stories about how indifferent people can be. So much so that one girl M. fell face down in a deep puddle and choked. I was lucky - almost always with me were very close people who did everything that they depended on, so that the attack did not end for me fatally. At those times when I was less lucky, the ambulance arranged me as a drug addict with an overdose - alas, not only passersby, but also medical workers take the foam from their mouths and convulsions not for epilepsy. By the way, when I was brought to the hospital, then, despite all the assurances about epilepsy, they put in droppers for detoxification.
Worse trips to the doctors turned out to be only surfing on the forums and medical sites. I’m talking about what I’ve been reading a lot about: irreversible personality changes on the background of epilepsy, mental abnormalities, the gradual development of dementia (one friend even tried to encourage them, they say, you will fall a long time) about aggression. I was almost ready to put on a straitjacket myself until one kind person, thank him very much, twisted his finger at his temple and said that on the Russian-language Internet it is better not to look for anything on such topics at all - and switched me to British and American sources . Although this did not save the situation either - self-diagnostics brought me still in a great jungle.
Quite by chance through working contacts, I once met Olya, a girl of the early thirty, with epilepsy diagnosed in childhood. Of course, she told her about her epic with convulsions. Olga didn’t try to diagnose me, but with a sigh she advised: “You don’t need to dress in a different way. Well, it’s presentable, it’s solid ... That’s what always happens on the street.” Действительно, мой внешний вид очень отчуждал меня от общественности - в те разы, когда я падала на улице, то лежала там без сознания по несколько часов. А факт наличия на видимых участках моего тела татуировок вызывал брезгливые замечания даже у медицинского персонала.
Помню, как медсестра в отделении, куда меня доставили, посмотрела на меня и едко бросила: "Пособирают всякую шваль, а ты с ними таскайся тут. Another girl is called - you don't want to chop anything on your forehead? "Even some doctors, whose profession, as it seemed to me, implies immunity to any anti-scientific garbage, suggested the connection of my seizures with tattoos:" Well, you have this back, well, drawing, runs along the spine ... It’s all connected, you don’t know where it goes around. "Needless to say about the philistine attitude to epilepsy. I had to answer the most ridiculous questions, starting with" And this is not contagious ? "and ending with" Isn't it in psycho Are they treated with flax? ”They also advised me to go to church, because I“ finished the game ”and“ people do not get tested so easily. ”
Perhaps I would have hoped further that everything would be decided by itself, listened to the ridiculous diagnoses and assumptions of doctors, but epilepsy apparently understood how difficult it all comes to me, and decided to act peremptorily - literally poking me face in that going on with me. I do not remember the events of that morning, because
my every seizure is associated with amnesia. I got out of bed, went to the bathroom. And that's all. Subsequent, very vague memories - as I lie in the hospital ward, my head is bandaged according to sensations, my husband is near, blood is taken from a vein. The state of being stuck between sleep and reality. I recognize my husband, I notice that he has some kind of red eyes, I ask, they say, haven't you slept? He covers his face with his hands. I answer the doctor on the machine in English and understand that I am in the UK. For the next half hour I’m stubbornly recovering the data about myself and the events of recent months: so, I’m Dasha, I’m a journalist, I used to live in Moscow, yes, yes, then I moved to London, so, for some reason, Bali climbs into my head, oh yes I was in Bali ... Then again I fall into a heavy sleep, which seems to drain the last remnants of consciousness.
Wake up again. The memory is still shattered, but at least I already realize that something happened to me. I ask my husband, K., to tell, I get nervous, I get scared, I try to feel my body for injuries. A terrible headache. The rest seems to be intact. Husband tells me that I had a seizure. I'm starting to get even more nervous - my thoughts break off, the memories are fragmentary, and I haven’t been connected to the monitors because of the seizure. With all my strength, I am trying to make a simple self-identification, but in my head there is complete confusion. I cannot realize my own personality, and it is terrifying.
I'm disconnected again. I see a doctor, to myself I laugh at his funny bang, he keeps very professional. Explains to me that it is necessary to sew up the wound as soon as possible. What wound? Where? It turns out that in addition to severe head bruises, I, falling, ran into the corner of the plinth with my face. My eyebrow and eyelid are cut, and my facial nerve is damaged.
Only three days later I finally came to my senses, and the fact that I could constructively recall almost everything I wanted brought me wild delight. And then came the wild horror, which was supposed to come even after the very first seizure, but, apparently, my self-preservation instinct is poorly developed - I, as it were, by the way, realized that each of my previous attacks could have ended at best as well. Semi-closed eye with blue-scarlet hematoma, swelling in half of the face, sutures - seven stitches tightening the edges of the wound. So-so picture. But this reminder about myself, which epilepsy left on my face for the rest of my life, sobered me very much. Animal fear chanted: "Treat, you can not postpone!"
The next few days I spent in the prescribed bed rest and thinking about how it came to this and how I could behave so foolishly and not do everything to get the medical care I needed. Belated realization that it was necessary to give up everything and deal with their own health. That it was necessary to visit not ten doctors, but one hundred, two hundred. Here, of course, a lot of things can be said - that, when day after day you rush headlong over something conditionally important and conditionally interesting, only a blurry picture remains around, which quickly eats up even obvious problems due to low resolution. It was also hard for me to come to terms with the fact that I could not cope with the problem myself, that I did not have these internal reserves - I was used to perceiving life's troubles with the gambling power of the endurance test.
Another reason is that society constantly pokes you, that there are people who are harder than you. What do you say, sit down and rejoice that you do not have cancer. I heard it many times from all kinds of people, including doctors. The thought itself is pretty wild - how can you be relieved by the realization that someone else is worse? It is as if you are trying to make your rights feel sorry for yourself: you must grit your teeth and "sit and rejoice." And what is most terrible, this position was only on hand to me - another opportunity with a clear conscience not to admit the obvious. A spoon of tar in my barrel of honey, which seemed to me to have a life of its own.
At the time of my last seizure, I had already moved to London. I managed to get acquainted with local medicine and continue the examination. Although I didn’t really believe that I would be given a final diagnosis. But everything was decided quickly: I was diagnosed with juvenile myoclonic epilepsy, and also denied everything I had heard in Russia. It happened indecently quickly, compared to how I had toiled for a long time. Epileptologist O'Dwyer interviewed in detail not only me, but also my spouse - the witness of the seizure. He 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 there are still international standards for the diagnosis of epilepsy, which Russia does not support. It is also possible that diagnostic difficulties in Russia also arose because my type of epilepsy occurs in 10% of all world cases of the disease. In my case, firstly, there is no concept of childhood, in which epilepsy supposedly begins, the disease can manifest itself up to 25 years. Secondly, the lack of urination is also not a reason to refute epilepsy.
As for the fact that in two years remission can be achieved, as I was promised in Sechenovka, this is also not true in my case. Drugs will have to be taken for life, 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 was conducted in Moscow turned out to be “clean” is due to the fact that epilepsy is difficult to catch on monitors. Pregnancy in the next couple of years, I also better not to plan. I can not say that I was planning, but the remark turned out to be important, because even in this case I can’t stop taking the drug - and here the question arises about the danger to the fetus. But this is another decision that I have yet to make.
It turns out that I was sick all my life. By the age of 22, the body could no longer resist and seizures from micro-episodes developed into full-fledged
Most of all in a conversation with Dr. O'Dwyer I was, of course, struck by his confidence in the diagnosis - categorical confidence. I do not know how many times I asked him if he was sure, but every time the answer was: "Yes, I am absolutely sure that you have juvenile myoclonic epilepsy." Further, he quoted to me about a dozen studies, cited statistics. We talked for about an hour - and I understood. I finally realized that I have juvenile myoclonic epilepsy. When he told me how the disease was going on, I had goose bumps - I recognized myself. It turns out that with my type of epilepsy, severe seizures appear only with the course of the disease, before this mini-seizures occur, which most people do not notice. When suddenly twitching hands or body, as it were, shudder sharply. After this, confusion usually occurs. It haunted me all my life: it happened as if I was falling out of reality, and then for a long time I could not concentrate. Fading, blinking eyes and looking somewhere in the distance. I used to write it off for information overload.
As for the sharp twitching of the limbs, my friends and I always considered me the most awkward person. How many powder boxes suddenly fell out of my hands and broke - so generally it’s scary to remember. Even in school, no matter how I wrote the calligraphic handwriting, I was often lowered marks for blots - sudden strokes in the midst of dictations and homework. But it turns out, I was sick, consider, all my life. By the age of 22, my body simply could not resist anymore and the seizures from micro episodes developed into full-fledged ones. For me, this was a revelation. I’m not afraid of this word, I’m ready to share the fateful meeting with Dr. O'Dwyer with all those 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 don’t have a tendency towards detailing ..." Dr. O'Dwyer responded instantly: "Do not worry, you and Mr. Dostoevsky have different types of epilepsy." After I left Dr. O'Dwyer, I burst into tears.
On the eve of the start of the drug that Dr. O'Dwyer prescribed for me (Levetiracetam, in Russia at the registration stage), I had a seizure, which I described above. In the bathroom. You can see its effects on the photo after five days. Now imagine how much harder they would be if they had a seizure in a more traumatic environment than their own bathroom. For example, near water. Or at the edge of the platform. They die not from an epileptic seizure, but from help not provided in time. I don’t know what would have happened if I hadn’t been near my beloved person, who stopped the blood, turned me on my side so that I didn’t choke in the foam from my mouth mixed with blood, called doctors, who tried hard so that I eventually opened my eyes wiggle the eyebrow. By the way, this "person nearby" for hundreds of others suffering from epilepsy may well be you. With an epileptic seizure, a person drops sharply, after which his body begins to shake up convulsions, he can make strange sounds, and his breathing usually stops - this can scare. But it is very important to find the strength and help: the most important thing is to hold your head during a seizure. From whether you commit these simple manipulations, life will depend - albeit not yours, but from this no less unique and no less unique.