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The Cure is You: Dealing with Chronic Illness Part 4

Friday, February 6, 2015 12:26

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I hesitate to even classify this under Chronic Illness, but because of the previous posts regarding diabetes and because of complications related, I will. Because of the seriousness of the condition, epilepsy has been reclassified as a disease.

And yet, in most epilepsy support communities, it is shouted from the rooftops that: Epilepsy is not a disease, it is not an illness, it cannot be cured in such terms, and that it is a disorder that can be controlled– and controlled to the point where the symptoms are drastically reduced. However, epilepsy is not taken as seriously as diseases like diabetes and cancer. Also, in my mind, disease implies there is something wrong with you. There’s that natural blemish in the word itself: dis-ease. I believe it stems from that old traditional mode of thinking wherein the person suffering is to blame, that somehow you pissed off god enough to make your illness for you. See my last posts for my feelings about shaming the ill.

Apples and oranges. It’s all semantics, but whether you call it a disorder or a disease, epilepsy is serious and it can have life-threatening consequences. It is a disorder that is understood, but yet the cause of which, in most cases is unknown. It is unpredictable. Epilepsy is also a condition that can develop; you don’t have to be born to be epileptic. Head trauma is a major cause of epilepsy.

I think of all the “things” I could have been diagnosed with, epilepsy was the most mystifying and one of the more frightening diagnoses. There are, without question, more devastating ones, but I honestly never thought epilepsy would be mine. The first time I heard it, in conjunction with myself, the very word sounds frightening: epilepsy. It is one of the more stigmatized conditions and yet more people live with epilepsy than multiple sclerosis, cerebal palsy, and Parkinsons.

It is so varied that every time I go back to read up on the condition, I learn something new and alarming each time. I thought I knew a fair amount about epilepsy, having taken my previous advice to educate myself– I read and read and read more on it– but I admit, I’m still freaked out. Especially after just “discovering” something called SUDEP: Sudden Unexplained Death in Epilepsy. I’m thinking it should be called SUDE, but whatever. Apparently, it’s not a common thing, but in about 2% of epileptics of young to middle age, sudden death is possible. I guess it sort of undermines what my doctor told me when I asked her, upon my initial diagnosis, if epilepsy could kill me. Well, I live in Staten Island where the pollutants in the air or the morons on the road can kill me, so what else is new?

Epilepsy is a complex disorder. The best way I can describe it comes from experiencing it firsthand and from what my last neurologist called it: a short circuit in the brain. As I already said, calling it a disease is a tricky thing and I don’t mean to offend anyone, disorder or disease, repeated seizures that have no other cause and continue over a length of time is classified as epilepsy. Before thinking you have epilepsy, be sure to read about the definition and diagnoses. I hate bombarding you with links, but I wanted to give you a wide variety of different resources as the basis for your own research.

I don’t suffer from grand mal or tonic clonic seizures. These are the seizures that most people think of when you think epilepsy. My diagnosis (and before sitting to write, I checked the notes my neurologist actually gave me to help make it more “real” for my family) is partial onset seizures in the frontotemporal region of the brain. It’s also called partial-complex (or complex-partial) seizures, temporal lobe seizures, or psychomotor seizures. Having the piece of paper and a name doesn’t make it any more real for my family. With the exception of my husband, who has witnessed my “episodes” and possibly my older brother who may have also experienced seizures when he was a child– but he seemed to grow out of them– my parents and my younger brother still, I am certain, doubt the diagnosis. Somehow it’s easier to believe that I’m a hypochondriac than an actual epileptic, more’s the pity.

I have lived 38 of my 40 years as an undiagnosed epileptic. I don’t know the exact percentages of how many epileptics go undiagnosed. But the last neurologist told me something like only 2/3 of those with a proper seizure disorder are ever actually diagnosed. She was the 4^th or 5^ththat I’ve seen in my lifetime and the only one that actually ever used the term seizure disorder, which actually confused me because she didn’t intially say epilepsy until I asked. Apparently, the term seizure disorder sounds less offensive to some people than epilepsy.

After reading the list of symptoms that parents should look out for, I felt overwhelmed because I know I had a good chunk of them growing up. I probably, had I been diagnosed at that time, would have been categorized as having absence seizures. I admit that even though I’ve accepted this as my bag and I don’t blame anyone (except maybe my doctors) for not diagnosing it sooner, it is an overwhelming thing at times. I wonder how different things may have been for me had I been given this diagnosis earlier. I may not have struggled in school as a child or grown up thinking something was wrong with me. I might have had an answer for why I became so overwhelmed with fear that I would burst into tears– never when anyone was around– or hide in my room. I always figured I was a person suffering from depression, but since the age of 5. However, had I been diagnosed at that time during that time, I may have been medicated to the point where I would not have developed into the person I am today.

By having a kind of epilepsy that is not easily controlled by medication (if I’m to believe what my doctor told me, but she also didn’t tell me about SUDEP either, so go figure), by being diagnosed as an adult, and by being diagnosed with a kind of epilepsy that I have been able to control without medication has truly made all the difference. As with my articles on my husband’s diabetes, I cannot suggest my course of action for children. Nor will I tell you my reaction to my condition is appropriate for you or for the epileptic in your life. As I’ve said before: My recommendations are for educational purposes and are not to take place of personalized medical counseling, diagnosis, and treatment from a trained health practitioner.

So that’s what you call it?

Epilepsy, I am learning, is still very much a stigmatized condition. I just didn’t realize how badly. It’s something I don’t tell most people because when you do say epilepsy, you are treated differently. When I told my mother that I had finally, after years of searching for a name to what ailed me, been given a name, a diagnosis that was not psychological and was backed by actual test results, she was skeptical but hopeful and very frightened. I think she thought I was going to tell her I had a brain tumor. When I said epilepsy, she thought I was making a joke. Then she thought I was making it up. Her immediate response was: but no one in our family ever had it, so how can you? My question to her was: if I wasn’t diagnosed until now, how would you have ever known anyone else had it? And then I reminded her of my older brother’s seizures which stopped before he was 10 years old.

Even now, two years later, whenever my seizures come up in the course of conversation, I hear that note in her voice that she still doubts that I actually have this thing. Especially because I never opted for the medications the doctor was so quick to ply me with. When I was studying psych and when I worked in a hospital– and from my husband who still works in a hospital– I knew all about Keppra and all it’s wonderful side-effects. When I saw that name on the script the doctor handed me, I wanted no part in it. Especially when she said she would be increasing my dosage to an extremely high level, much higher than what she would recommend for someone with tonic-clonic seizures, simply because my seizure didn’t respond well to the medication. She volunteered that it was her own theory that the response rate was low because the dosage just wasn’t high enough. She poo-pooed away my concern over side effects because, while she had taken my extensive history she felt my condition was worth the risk of side effects. I saw her maybe 3 times and each time I was in her office for more than 40 minutes. The first time, when she took my history, I was actually in her office for almost 2 hours– speaking with her for 2 hours. She asked me dozens of questions, took extensive notes, and discussed the possibility of epilepsy despite my previously “clean” EEG and MRIs. But, when I told her of my habit of falling, especially the last two (which prompted me seeing her) when I fell getting on the bus and crossing the street, she explained the seriousness of even absence-type seizures. What if you have a seizure and fall onto the tracks when you’re waiting for the train? What if you didn’t fall curbside, but into traffic? She was absolutely correct, but still heavy duty medication was not for me.

As a pagan and a person very connected to the world around me, the idea of taking something that would disconnect me, that would make me feel dampened somehow, if you can understand me, was not an option. My ability to sense the world around me is very important, not just to me spiritually, but as a writer, an artist, and a teacher. If I couldn’t use all my senses to do the work I was put on this earth to do, then what is the point? I knew about keppra and the effects of anti-epileptics. Keppra’s wonderful conglomerate of side effects included everything from eczema to headache to “somnolance” to violent tendencies to suicide and self-harm. While I am not a violent person, I do have a temper and I do write fiction of a decidedly darker, weirder, more vicious nature. I have no desire to take fiction into reality. I also had no desire to make a horrible case of eczema worse. I’m also a person who has struggled with depression and even, thanks to a wonderful acne medication I was on as a twentysomething, had more than mere thoughts of suicide. All together, I needed another option. I needed to find another treatment or another way to heal.

Next time, diagnosis, things to consider (especially for adult women with epilepsy), & my own treatments.

Source: http://www.green-and-growing.com/2015/02/the-cure-is-you-dealing-with-chronic.html

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