Hello,
My name is Tamara, I'm a 27 year old 3rd shift Walmart worker.
I have been a problematic person my whole life: unexplained continuous weight gain, early start of my menstrual cycle (10 years old), irregular menstrual cycles, bouts of insomnia, and extreme emotional imbalance. After dozens of tests my doctor finally said "You are an anomaly that cannot be explained." I'm not diabetic and every organ in my body functions properly.
When I was about 11 years old I started having what I called "brain spasms." I would get a sudden feel of deja vu and a kind of withdrawn feeling. I have a tendency to experiment in EVERYTHING so I used to indulge in these spasms trying to figure out just what it was that was causing them, how long they lasted, etc. The only problem was that afterwords, even though I could remember that I had an episode, I couldn't remember anything that had happened while it was occurring. I also never told my parents about it and they could never tell that I was having one.
One day while driving to work I began to have an episode and freaked, I concentrated hard on the car in front on me, mentally telling myself "NO!" and it went away. Happened again a few days later while I was at work and I did the same thing; picked something to focus on and forced it to stop. After that I never had another one.
Last year (5 years after the last brain spasm) I woke up with a wet bed, stiff muscles, and a chewed up tongue. Did some research and decided that it was a seizure. 6 months later I had another one, same thing; while I was sleeping my bladder released, I thrashed around enough to make my muscles sore and also chew up my tongue. Tonic Clonic seizures. Since this time I have had half a dozen more seizures, regularly increasing in frequency, but (according to my Mother) lessening in intensity. These last ones were only 2 weeks apart and I barely chewed up my tongue at all.
In my third seizure my Mother heard me trashing about, apparently I also make a loud yelling/moaning noise when I start, and freaked. Rushed me to the ER, they sent me to a neurologist and she said it was most likely nocturnal epilepsy, but wanted to run a series of scans to be sure.
Now, these ER and Neuros visit cost me about $2K, having been reduced 70% because I didn't have insurance at the time. Thankfully I had enough in my savings account to cover it.
I make just enough to cover gas, car and medical insurance, food and a few other minor bills. My new medical insurance has a 2K deductible. The bottom line is, I can't afford the first $3K scan much less the $10K follow up scan. I should also note that I don't qualify for any of the many state funding programs, believe me I've tried. And in any event this is just one more of a dozen health issues I have, and if I follow my pattern the Nero lady wouldn't find anything wrong with me anyway. The Doctors never do.
All this to say, I joined this forum just to see how other people deal with, adjust to, and afford their seizures. I don't know that I actually have epilepsy, but if I do I thought this would be a good site to keep in my bookmarks.
So, Hi Out there! and look forward to reading all your people's posts.
My name is Tamara, I'm a 27 year old 3rd shift Walmart worker.
I have been a problematic person my whole life: unexplained continuous weight gain, early start of my menstrual cycle (10 years old), irregular menstrual cycles, bouts of insomnia, and extreme emotional imbalance. After dozens of tests my doctor finally said "You are an anomaly that cannot be explained." I'm not diabetic and every organ in my body functions properly.
When I was about 11 years old I started having what I called "brain spasms." I would get a sudden feel of deja vu and a kind of withdrawn feeling. I have a tendency to experiment in EVERYTHING so I used to indulge in these spasms trying to figure out just what it was that was causing them, how long they lasted, etc. The only problem was that afterwords, even though I could remember that I had an episode, I couldn't remember anything that had happened while it was occurring. I also never told my parents about it and they could never tell that I was having one.
One day while driving to work I began to have an episode and freaked, I concentrated hard on the car in front on me, mentally telling myself "NO!" and it went away. Happened again a few days later while I was at work and I did the same thing; picked something to focus on and forced it to stop. After that I never had another one.
Last year (5 years after the last brain spasm) I woke up with a wet bed, stiff muscles, and a chewed up tongue. Did some research and decided that it was a seizure. 6 months later I had another one, same thing; while I was sleeping my bladder released, I thrashed around enough to make my muscles sore and also chew up my tongue. Tonic Clonic seizures. Since this time I have had half a dozen more seizures, regularly increasing in frequency, but (according to my Mother) lessening in intensity. These last ones were only 2 weeks apart and I barely chewed up my tongue at all.
In my third seizure my Mother heard me trashing about, apparently I also make a loud yelling/moaning noise when I start, and freaked. Rushed me to the ER, they sent me to a neurologist and she said it was most likely nocturnal epilepsy, but wanted to run a series of scans to be sure.
Now, these ER and Neuros visit cost me about $2K, having been reduced 70% because I didn't have insurance at the time. Thankfully I had enough in my savings account to cover it.
I make just enough to cover gas, car and medical insurance, food and a few other minor bills. My new medical insurance has a 2K deductible. The bottom line is, I can't afford the first $3K scan much less the $10K follow up scan. I should also note that I don't qualify for any of the many state funding programs, believe me I've tried. And in any event this is just one more of a dozen health issues I have, and if I follow my pattern the Nero lady wouldn't find anything wrong with me anyway. The Doctors never do.
All this to say, I joined this forum just to see how other people deal with, adjust to, and afford their seizures. I don't know that I actually have epilepsy, but if I do I thought this would be a good site to keep in my bookmarks.
So, Hi Out there! and look forward to reading all your people's posts.
