heylena
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Hi, my name is Elena, 23-years-old, college educated and work as a Veterinary Assistant.
This is my story on my epilepsy; the inner struggle is that when a person is identified of having epilepsy, the majority public assumes that they have the extreme version of it (convulsive shaking / twitching and at the end, that they don't know who they are - in a state of confusion). The public doesn't know how to react to people with epilepsy or have any knowledge that there are levels of it. I had the minor case of it, in which I can still function normally, but it still has disturbed the flow of how I function day-to-day.
I had only, last summer, been diagnosed with epilepsy, but the symptoms are not something that is new or obscure to me. I have always had the minor form of epilepsy, but I wasn't educated neither was my family was about epilepsy.
These spells had occurred long before I was adopted, I have memories of two happening in an orphanage and everyone being extremely cautious around me. As I grew up, they happened a lot more frequently, but as a 10-year-old, I assumed it happened to everyone and never questioned it. After they started occurring a lot more and I couldn't gauge when or where they could or would occur, is when I talked to my parents about them. Because I was skinny, my mom assumed that they were fainting spells and that I wasn't eating properly or enough (this wasn't the case). When I would go to the doctor's office, they would tell me that the symptoms I was having were under "fainting" and that I was not eating properly - "was I eating properly? Vegetables, meats, drinking milk?" I was 14, when a nurse asked me if I was pregnant.
Although I didn't agree that the symptoms I was having fell under fainting, I gave up on the search of finding a satisfying conclusion and accepted that these minor spells would occur and that I would have to accept them.
In college, when I had to do all-nighters, I would avoid showers and be sure to eat something first thing in the morning as well as take a nap as soon as possible. I had to constantly be aware of my surroundings and make sure my body and mind were too (as a way to trick the symptoms to not occur).
The symptoms would occur in public, in the classroom, when I was walking, showering, in the morning. Some of them were minor while others were a little more startling - in the shower, falling, on impact breaking the bathtub faucet as well as doing some damage to my tailbone. In other cases, I would be walking to the library and then all of the sudden, I would fall and come home with scraped knees (I told my parents that I had tripped and fell because at this point my parents were hyper alert when these occurrences would happen). Minor occurences was when I would twitch in my chair and others would look at me strangely (I would say that I was okay, but would give no explanation beyond that), spilling coffee over my laptop or kitchen counter. At a restaurant, my second day at work as a server, I broke a vodka shot glass.
When I was 10, the symptoms was that I would be doing something and then, in an eye blink, I would be on my bed. I would be really confused, wondering if I fell asleep and how much time had passed when I was in this state. I didn't pursue if this was a medical concern because they would only happen once in a while, but as I got older, the symptoms became more complicated and developed. In high school and throughout college, when these spells would happen, for a few seconds, (I felt) my brain and my body were disconnected and what would occur is I would be conscious and aware of what was happening (I was falling or twitching uncontrollably) but I could not stop it until the very end.
What is important to know is that the symptoms would happen in seconds, not in minutes. Unlike what the public knows of seizures, mine were minor and I would be able to immediately pick myself up and anything else that I had spilt or broken.
It frustrated me that professional doctors and nurses would listen to my story and declare that I was only fainting and that I only needed to eat more. Even when I explained that I, in a sense, watched myself as all of this happened, but just had no control (when the seizure(s) would occur). Frustrating because I wouldn't get a warning from my mind (I wouldn't black out, get stars, etc). What would happen is that it would start in seconds and finish in seconds. With fainting, you have time to lay down until you can repose yourself (I have fainted before so I can decipher which is which). Extremely frustrating because I felt there was something wrong with my body, that I could not control the spells and did not know when they would happen.
I thought doctors were being lazy, but finally a doctor (with resistance) recommended a neurologist for me to go to. This was last summer, when I had already graduated from college. I was finally given an answer: epilepsy.
I do not take any medications because I do not believe in depending on prescriptions and want to control my seizures naturally. I have discovered my own triggers to the seizures: sleep, protein and stress. I went to see a neurologist and was recommended to eat 15g of protein 3x a day (morning, afternoon and evening). The difficulty is that sometimes I stay up and then the lack of sleep is a trigger for a seizure to occur (this happened this morning). I plan to take yoga as a way to de-stress, but with stress, there is no way of controlling it except by being aware that a situation stressing you out and to approach it as calmly as possible.
This is my story on my epilepsy; the inner struggle is that when a person is identified of having epilepsy, the majority public assumes that they have the extreme version of it (convulsive shaking / twitching and at the end, that they don't know who they are - in a state of confusion). The public doesn't know how to react to people with epilepsy or have any knowledge that there are levels of it. I had the minor case of it, in which I can still function normally, but it still has disturbed the flow of how I function day-to-day.
I had only, last summer, been diagnosed with epilepsy, but the symptoms are not something that is new or obscure to me. I have always had the minor form of epilepsy, but I wasn't educated neither was my family was about epilepsy.
These spells had occurred long before I was adopted, I have memories of two happening in an orphanage and everyone being extremely cautious around me. As I grew up, they happened a lot more frequently, but as a 10-year-old, I assumed it happened to everyone and never questioned it. After they started occurring a lot more and I couldn't gauge when or where they could or would occur, is when I talked to my parents about them. Because I was skinny, my mom assumed that they were fainting spells and that I wasn't eating properly or enough (this wasn't the case). When I would go to the doctor's office, they would tell me that the symptoms I was having were under "fainting" and that I was not eating properly - "was I eating properly? Vegetables, meats, drinking milk?" I was 14, when a nurse asked me if I was pregnant.
Although I didn't agree that the symptoms I was having fell under fainting, I gave up on the search of finding a satisfying conclusion and accepted that these minor spells would occur and that I would have to accept them.
In college, when I had to do all-nighters, I would avoid showers and be sure to eat something first thing in the morning as well as take a nap as soon as possible. I had to constantly be aware of my surroundings and make sure my body and mind were too (as a way to trick the symptoms to not occur).
The symptoms would occur in public, in the classroom, when I was walking, showering, in the morning. Some of them were minor while others were a little more startling - in the shower, falling, on impact breaking the bathtub faucet as well as doing some damage to my tailbone. In other cases, I would be walking to the library and then all of the sudden, I would fall and come home with scraped knees (I told my parents that I had tripped and fell because at this point my parents were hyper alert when these occurrences would happen). Minor occurences was when I would twitch in my chair and others would look at me strangely (I would say that I was okay, but would give no explanation beyond that), spilling coffee over my laptop or kitchen counter. At a restaurant, my second day at work as a server, I broke a vodka shot glass.
When I was 10, the symptoms was that I would be doing something and then, in an eye blink, I would be on my bed. I would be really confused, wondering if I fell asleep and how much time had passed when I was in this state. I didn't pursue if this was a medical concern because they would only happen once in a while, but as I got older, the symptoms became more complicated and developed. In high school and throughout college, when these spells would happen, for a few seconds, (I felt) my brain and my body were disconnected and what would occur is I would be conscious and aware of what was happening (I was falling or twitching uncontrollably) but I could not stop it until the very end.
What is important to know is that the symptoms would happen in seconds, not in minutes. Unlike what the public knows of seizures, mine were minor and I would be able to immediately pick myself up and anything else that I had spilt or broken.
It frustrated me that professional doctors and nurses would listen to my story and declare that I was only fainting and that I only needed to eat more. Even when I explained that I, in a sense, watched myself as all of this happened, but just had no control (when the seizure(s) would occur). Frustrating because I wouldn't get a warning from my mind (I wouldn't black out, get stars, etc). What would happen is that it would start in seconds and finish in seconds. With fainting, you have time to lay down until you can repose yourself (I have fainted before so I can decipher which is which). Extremely frustrating because I felt there was something wrong with my body, that I could not control the spells and did not know when they would happen.
I thought doctors were being lazy, but finally a doctor (with resistance) recommended a neurologist for me to go to. This was last summer, when I had already graduated from college. I was finally given an answer: epilepsy.
I do not take any medications because I do not believe in depending on prescriptions and want to control my seizures naturally. I have discovered my own triggers to the seizures: sleep, protein and stress. I went to see a neurologist and was recommended to eat 15g of protein 3x a day (morning, afternoon and evening). The difficulty is that sometimes I stay up and then the lack of sleep is a trigger for a seizure to occur (this happened this morning). I plan to take yoga as a way to de-stress, but with stress, there is no way of controlling it except by being aware that a situation stressing you out and to approach it as calmly as possible.
I can understand you wanting to control your seizures naturally, but realistically there are some conditions which pretty much need some sort of medical intervention. Epilepsy is an extremely complicated and poorly understood condition, and even all the meds and non-pharmacological treatments are kind of a crap shoot, to an extent. Unfortunately. I don't know if anyone here is controlled completely without medication. Most of us don't even have good control with meds, much less without! In my case, in over 30 years of having epilepsy, I have never found any triggers whatsoever. My brain just seems to randomly decide that it's time for some seizures and away it goes! Anyway, I hope you can find some answers which work for you. If you find someone who has had success without meds, be aware that what causes their seizures might be completely different from your underlying pathology, and what works for them may or may not work for you. That's pretty much the case with most epilepsy treatments. In any case, keep in touch with us here, and with your neurologist, and let us know how things go.