Seizure's, EEG's, the ICU and Lupus (UD 11/21/14)

So, here is the first bit. I will be backdating to sunday, but here is some quick info first:

First, for those who didn’t know, I started have the siezure (for what I knew), about 6 months ago. It has been a down hill roller coaster ride since then, but hopefully I am gettin around the curve now. Two years ago, I fell in december on my bike hitting my head on the curb, just under the edge of helmet. I happened very quick on the ice, and I was unconscious for mabye 15 seconds. I was in a transitional home at that point, and long story short, the owner was not so nice. I never recieved any medical treatemnt, and was never seen for my head injury. I was instead given anti inflammarotry’s, and the most of memory of the next three day’s was the worst pain and pressure in my head that I had ever felt.

About a month or so later, the blackout’s started. and then a bit later, the nerve pain. The black outs were short to begin with,a nd while I don’t remember a single one, I only know about them beauce I would call and message freinds very dissoriented with slurred speech, and horrible messed up text messsages. These messages usally stated how I did not feel right, was confused, and oftern had out of context tidbits tacked on to the ends. One of these black-out text is how I lost a freind, whom I’d secretly liked for a long time, and I have not heard from him since, but that is asside the point.

In luie over my declined cognitive health, I had very little money, and had to move 5 times over the two year time period, even once resorting to moving nine miles out of town, and having to ride my too my minimum wage part time job. I became really weel known around town as “that amazing girl who rides the bike through all weather, all year , nine miles that works at the dollar store.” One year ago, I was at the top of my job, The next-in-line assistant manager, the top freight crew member, the top chashier, and the one who would always show up to cover a shift, no matter the weather. I was doing great, had lost 100 lbs, and as hard as it was with the little money I made, I always made it work.

In the august of 2012, I was cut off by a car on the bike path, and t-boned them on my bike going 25 mph. At the time I still lived nine miles away, and had been working two jobs, hoping to save enough to get anactual apartment instead of renting a room. That day I had to be off one job at 4:00, change my clothes, ride three miles to the other, get dressed again and be ready to clock in at 4:30, so in my hurry I got halfway to town, ad realized I forgot to clock out at the first job. I had to go back, clock out, and re-ride the 1 1/2 miles I hade gone, so I was in a bit of a hurry you know? I had never once been late to work, ever and today wasn’t gonna be the first. I was trying so hard, so I could get my kitten back, that was growing up on my freind’s, cousin’s farm out of town, as my landlord was not fond of cats. anyways, the driver of the car yelled at me, after i slid onto the hood of thier car, after the cut me off. They were turning right, and the driver was compltly stopped and looking right right at me, or through I guess, cause she pulled right in front and slammed the breaks in front of my when she saw me, it was too late to hit the braks, so I hit her full speed, and I’ll tell ya, it was like hitting abrike wall. I was a bit dazed and in a bit of shock. she yelled at me and drove off. My bike tire was bent up, my chain fell off, anf I couln’t even ride it. She took, so I never got any info, but I was only a block away from work. So I ran dragging my bike, and still managed to clock in and get dressed in time for work, even after all that. One hour later, they sent my to the hospital, I was in so much pain in my gut I could barley stand, let alone make the sandwich’s ( i work at arby’s). Furtunallt the hospital was only two blocks away, so I dragged my self and my broken bike down there. Internal bleeding, and bruised pelvis, a freind drove me home that night.

After that the nerve pain got worse. I had to quit the second job aat arby’s, as the manger refuse to give me anytime off, and the docotr had instructed me not to ride my bike for two weeks lest it come open again. It was small and unlocatable, but enough to mke me pass out after a couple hours of riding, and more from the pain than anything else. So thats my back history of the year before. I finally moved back to town, but the trouble did’t stop there. I had gotten my first apartment, and againtst my bett judgemtn I suppose. Turned out to be a crummy landlord, and an apartmant with a major mold problem multiple electical problems, etc. The mold gave me bronchitis twice and flared my asthma, so got pretty ill, and was sleeping all the time.

Finally I got out of there, was forced to sue the landlord to get out of court. I did my research learned the laws, and my rights, which are very few, and won my first ever (and hopefully last)lawsuit with now legal aid at all. I was out of there, in feburary of 2013, in a good healthy apartmentand luckily for me a low income place with, imagine that, no mold and warm water. With in two months, I was healthy again, started to recieve my monthly SSI payments I had been fighting for for two years, got a new bike, and even a pair of studded winter bike tires from a lady I still have never met, who had heard me talking to a coworker about my year-round endurance. We do get quite a bit of snow here, and I had seen my share of the pavemant that is for sure. Guess she was impressed.

Anyways, Suddenly life was easy. That battle with the universe, and my own self will and perseverance to make it on my own, without my mother’s help, had finally been won. I even had good ques with the DM at my work. or so I thought anyways. Starting around mid august of 2013, my nerve pain suddenly trippled, and got really bad, even sometimes ccrippling and incapasitating so that I was crumpled up up, and gasping in tears on the ground. This caused my first seizure the last week of august, and put me in an ambulence on a one way trip to bonner general. They misdiagnosed me as the have every single time since. I was told I had had a panic attack over a pulled muscle, even though I had not a single tight muscle in my side. A soon as they heard about my history of bipolar, it was as iff that crippling pain had never existed to them. And it was all too easy for them to slap that “label” of anxiety attacks on to chart history.

-I’ll be back with more later, i got a nasty headache right now..sorry..

OK so that was bit of the backtracked history. As of late some have been following my other thread called Simple and Complex Partial Seizures. In that thread, I had listed some recent developments, as well as some of my own research looking for more input and some other possible leads.

I also posted about some of my recent hospital visits. The only hospital near me is Bonner General, and they have pretty small and limited facilities aside of a not-so-nice/helpful hospital staff in general. The next nearest hospital is 50 some miles away in CDA, so not being able to drive and not knowing many people, I was kind of stuck with Bonner General as my only choice, aside of the fact that almost every time I was picked up by ambulance, I was unconscious, delirious or a bit of both, so I wasn’t making very many of my own decisions.

In November of 2013, two weeks before Thanksgiving I had my next big batch of seizures one night at work. Shelly, the on shift manager at the moment, said I had asked to sit down complaining of really bad pain, to which she had me go in the office. Ten minutes later, near to tears by this point, she had me just clock out for my break and I moved to the chair by the table in the office. About 10 minutes after my break should of ended, Shelly came into the office worried about my nerve pain, only to find me crumpled up in the chair, tears running down my face, unable to move with all my muscles in my body tensed up very tight. I could barely speak and only whimpered about the “burning pain” that racing all over my body, outside n of what was going on of my confusion.

sorry next bit a bit later

EDIT W/ NEXT PORTION:

Ok anyways, I am so grateful for Mary, also known as Laundry2011. She has been so helpful, taking me to the store, post office etc, when she can and has been coming here to watch me in the evenings, before she goes home.

So Shelly ended up calling Mike, my freind and employer, as well as Mary. I was in that position for about an hour before the muscles finally let go. Slowly I became able to talk again, but couldn’t really remember what had happened so much, was slightly confused and acting somewhat drunken like, with slightly slurred speech. On top of that I couldn’t stand without leaning on something, and walking at that point would of been unheard of. They managed to help me/kind of drag me to Mary’s car so she could take me home, while Mike stayed to cover the rest of my shift.

I was reported to have a very dorky smile on my face, and on the way home I began laughing like a crazy person, crying at same time because I had no idea why I was laughing. I guess it was pretty funny and for those of you who are wondering, this is called a Gelastic Dacrystic Seizure.They occurred twice more before the night was over. So now I was confused, seizure-drunk and laughing/crying like I was crazy, still couldn’t support my own weight and could barely hold my head up. Mary got some help from the neighbors next door to drag me upstairs, and as we had not yet known that I was having seizures, she unfortunately didn’t have much of an explanation to the neighbor.

The rest of the night was pretty hectic, with Mike stopping by after the store closed, to check up on me. I had multiple more sets of conscious and unconscious bouts of muscle spasms, before I finally passed out and fell asleep just before midnight. The next morning at aquatic therapy (which I had begun a month before, in attempt to at least somewhat alleviate my nerve pain), the therapist decided to just send me back home after talking to Mary, and Mike who had met us at the office. (I don’t have a whole lot of friends, so my boss being there actually isn’t as awkward as it may sound) She mentioned it sounded like the seizures her niece sometimes had, aside of lasting much longer, and that would explain fever that I had coming and going that day and the night previous. So that night, I researched the seizures for the first time, and boy was I shocked, of everything I had looked, seizures was the only thing I could think of to explain what had started two years previous.

Sunday night I

sorry I cut off, Sorry this is so long, but I am almost done. to continue:

…Mary was peering over the bed with a funny look on her face like she couldn’t decide if she should laughing or not.
I just looked at them both and was like “what?”

The guys peers over at me with a half smile on his face and says, “Well, that was a total frontal lobe simple complex partial seizure”

Still a bit confused and slurred, I asked, “What did I do? Was it funny?”

“Oh you were howling like a dying cat for, oh…about 5 minutes?”
I looked at Mary, like “Really?”

She says “Ya, and it was kinda funny. At first I was wondering what the heck you were doing it for until I noticed you weren’t quite ‘there’, it was kinda funny, but I felt bad to laugh, so I didn’t..” The nurse guy or what ever kind of laughed and started hooking wires back up. Another nurse and the neurologist(?) or so I was told comes in, and says they’re putting 1000 mg of Keppra in my IV to slow down the Epileptic seizures that I was still have despite the Keppra I had been on for a few days already, and the Ativan earlier.

She was saying how it was wierd that I was able to have non-epileptic siezures at the same time as the epileptic, and how, even wierder, as good as she is (I’ve heard nothing but good things about her), she can’t tell the difference between the non-epileptic seizures and the true epileptic siezures, and startes talking about the “Weird results” from my first EEG on the 11th.

So here is the scoop on that. She called for an extensive 6 hour EEG, over a regular 1 hour, because even though she was pretty sure I didn’t have epilepsy, she just wanted to be sure. Well, the results came back abnormal. In fact I was actually having epileptic seizures every 3-5 minutes on the EEG. She said they were super short, but super strong spikes, strong enough to still come through even the Keppra. Meanwhile, the non-epileptic seizures that are overlaying the other seizures, are basically my brain shutting down, and seizing from stress. So what stress is this? Quite funny actually..The epileptic seizures make the non-epileptic siezures worse and vise versa. They both put stress on my brain and form a new stress reaction. That coupled with five hospital visits, multiple trauma’s in the past couple months, compounding nerve pain (like fibromyalgia but worse), complete physical exhaustion from having so many seizures in the first, not working (and the fact that I will probably be terminated next week for the time being), having bills and life in general, she said she wasn’t surprised.

It was about then I passed out and started having hallucinations from the high dose of Keppra. My body has high intolerances of perscription drugs. Mary said I was talking about “the beautiful, vivid trees, oceans and islands” I was going to. I think I was just visiting “lala land” as we jokingly call it now. I had many more siezures that even though they did slkow down.

So for a bit of info, when you are in the ICU, they come in every few hours at night to check your vitals and wake you up every four. Another thing they do, is to check your nerve response they will take their metal pens, and push them into various pressure points in your hands and feet. When you responding properly, it is very painful, and makes you rip your hands and feet away from them..What a test right??

Well, I was told just before midnight, I had had another epileptic seizure in my sleep, that had lasted about a minute. When they woke me I was very groggy could not move, and very confused. I barely remember it. The said the seizure had paralyzed my nerves temporarily, cause when the did the pen thing, and didn’t move no matter how hard they pressed it to moy joint. They just said I made a face sigling only a slight discomfurt. I had no more epileptic siezures after that.

The next day I had three more Non-epileptic seizures, one at about 12:00 noon, 2:30 p.m. and 3:00 p.m. roughly. I was discharged around 6:00, with some restrictions, and three prescriptions to pick up. Thursday I had three non-epi seizures, and Friday after getting up to check on the kitchen and discover the cat had destroyed my butterfly paint which had pretty much been sold and was waiting for a shipping quote, (my only income at the moment) I passed out and fell on the floor having about 8 over the hour and a half, and two more that evening at Walmart, and one more in the car.

So for now I am staying in my bed as much as I can until my strength comes back. One seizure puts a person down for a day at least. I’ll be down for a month or so. I see the neurologist Tuesday, I will have to wear a medical alert band, and take anti-seizure drugs the rest of my life. The non-epileptic seizures will go away over time, there are no drugs to treat them (thank god, cause I hate prescriptions) and I will begin therapy soon to manage the stress. I will also begin my aquatic therapy again soon, to help with managing the neuropathic pain.

My body does not like the Keppra. I have an almost constant headache, anxiety, and constant feeling of being “drugged up” and extremely moody. It is hard to explain aside of just saying I feel like crap and the anxiety is probably expected after what I have been through. I’ve started having nightmares about seizures, and have this almost constant nagging fear of passing out when I get up, or of having another siezure. I’ll be on the Keppra for the next three months while they slowly raise the Lamictol. Lamictol is the most powerful seizure medication there is, and probably the only one that can almost fully prevent my epileptic spikes. But there is a problem. The dose has to be started very low, and slowly raised. If they start too high, it will give a person hives, and a nasty rash that will always come back if they ever take it again, and then I’ll have lost the most powerful medication they have, and probably the only one my body will tolerate. I’ve been on it in the past, and it just gives me a dry mouth.

So for now I’m beginning my long road of recovery. I will be looking into getting a service/seizure dog. I’ll be hoping to have him/her trained to recognize and lay down by me if I have a non-epileptic seizure, and maybe to move things away from my head. They would also be good emotional support. I’m very glad to have my cat, but you can’t really train a cat to do that kind of stuff. I’m hoping to getting back out this summer, having all my bills paid, and applying for rehire. Meanwhile, I can practice my painting, and maybe write a saga of my life as an inspirational story. Who knows, maybe I’ll become a famous artist like Melody, or some unheard-of prize winning author.

According to Dr. Lavy, I am at an extremely high risk of having a full Grand Mal Tonic Clonic seizure at some random moment, even with being on the Lamictol and Keppra. And also, there is no way to tell if my seizure is epileptic or not, without being hooked up to an EEG. Basically if anti-status meds don’t work, it isn’t epileptic. That’s where the medical alert band come’s in. It will prevent them from unnecessarily inducing a coma, knocking my teeth our and hooking me up tp an incubator, and will probably save my life at least once. Dr. Lavy hadn’t seen my EEG results till I was admitted to the ICU, when she just happened to be the on call neurologist physician, so she hadn’t known how severe it was until then. I’ve most likely had this my whole life, with it being misdiagnosed as ADHD, with it slowly worsening over time after my head injury in 2011.

She offered to schedule as many EEG’s as I wanted if I was worried about the epileptic seizures. She is very interested in my non-epileptic seizures and how they react to the other stressors, and the true epileptic ones. I’m like the new new science project, kinda. Supposedly, you can’t have a non-epileptic seizure in your sleep, or at the same time as the other kind, but I have proven otherwise. Go figure, I’m pretty rare. So thanks for reading my story, and the support every has been. Just being able know people are out there who care and are willing to pray for you is immensely comforting.

I’ve had a lot of highs and lows on this roller coaster that is my life. I’ve known what it is like to be with and without a home, to not be able to afford food, not have transportation and live in a dump. I’ve known what it takes to build self will, and that sometimes when that is all you have left, you just gotta fight the odds anyways. I’ve known what it was like to to be fat and to be skinny, to want to live and do everything, to just want to be able survive, and do something. I’ve been sick and healthy and learned a lot of things down the road, what I want in a home, and what I don’t want, who your true friends are, and the meaning of being family, even if not by blood. The world can be harsh, it can be easy, but as my favorite quote says,

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a Ride!””