I had dropped out of college, still living in Minneapolis. My student loans were drying up. I was spending a lot of time at doctors and specialist, that alone felt like a full time job. Neurologist, Occupational therapist, Psychiatrist, Therapist and General Practitioners. I was also not just seeing neurlogist anymore, but “eptologist” which means a neologist that specializes in epilepsy.
It had been roughly eight months since my major Tonic-Clonic seizure in the hospital and my diagnoses of epilepsy. I was on a lot of medication.
A very high dose of Keppra, which is suppose to be the new age “miracle” drug both for full brain seizures and partials, but exceptionally special for full brain.
They kept me on the Benzos I had already been on for ten plus years for anxiety, because now was a bad time to stop. 1) stopping benzos CAUSE a seizure even in a non epileptic or not 2) benzo can actually help lower a seizure threshold.
A new medication which is mostly only effective for generalized seizures called Zonegran.
My meds had changed a few times over at this point. There aren’t as many meds on the market for generalized epilepsy. Sadly, I had an allergic reaction to a good one, I got a horrible rash every time we upped the dose which could actually be deadly, we had to stop immediately. The other drugs had scary side effects like massive weight gain, liver failure, kidney disease, inability to reproduce children, memory loss, and STILL a good chance of having seizures.
The meds the specialist and I choose was through a second round of epilepsy monitoring at Abbot Northwest Hospital, In Minnespoilis, MN. I was there for 12 days. Strapped to cords, wires, taken off my meds to see what my brain waves looked like naturally. We discovered something unpleasant.
It feels a little like that *jump* but more intense, along with slurred speech and I am one of the few that looses consciousness at the end of it for a few seconds. The most painful part of this is I will have clusters of these that last for hours.
These are also full brain seizures.
After this epilepsy monitoring with my specialist, we had concluded that I only had full brain seizures, which I was sad about. Partial seizures (meaning it starts in a part of your brain and often doesn’t attack your whole brain) means medications usually have less worsen side effects and if all the seizures start in one place of your brain you can surgically cut that part out and some people never have a seizure again! i wanted that. I wanted the shit show to be over. I wanted it to be as simple as slicing a piece of my brain out.
Klonapon, a benzo was added to my list of meds and so was upping Zonegran.
Fast forwarding to the eighth month period I previously spoke of. Out of money. My home was becoming very mouse invested. It was a very cold winter that winter and I lived in a 100 year old home.
The Keppra made me very angry, paranoid and full of rage.
The Zonegran had made me very spacey. Considering I was an engineering student at one of the top Engineering/medical/research schools, I suddenly couldn’t do basic percentages in my head anymore… that didn’t seem right. I lost weight and I mean, a lot of weight. I was a normal BMI, or starting to push the upper edge, but a very healthy BMI non the less, but at this point my BMI was in the 17-18 range (anything bellow 18 is considered anorexic and a possible medical emergency).
Benzos are just plain addictive. Luckily I found through my drug years through talking to drug counselors and realizing I was the type that could and did quit I was put in the category of “abuser” but not “addict.” However, your body becomes immune and if you take more to feed the habit that’s when it becomes dangerous, so instead I took what was prescribed. My body would go through withdrawal from time to time and keep me up many long nights.
I had to move from my mouse invested home. Between my low body weight and constant seizures I was getting sick.
It started with a virus that would not go away. Then I had a kidney stone, which is a common side effect from Zonegran. It had felt like en entire heart attack went through my whole body with a pain level of ten. We were only able to prove it a few days later with blood in my urine and no infection, but no more signs of stones in my kidneys.
Then I got mononucleosis for the second time in my life. This technically isn’t suppose to happen, but that’s for all the healthy people out there. I wasn’t around anyone that had it, so there was no reasonable explanation other than, my immune system was shot. The meds, low weight, getting no natural vitamin D from the harsh winter, living in a horrible mouse invested house..
My Doctors told me I had to move, because I could not have such a low immune system and be in an unhealthy environment. I was urged to call the city on my landlord and even though he was being a lazy bastard that I will probably not speak many words to him again, as he refused to admit it was his responsibility as a landlord, I just left and broke our lease agreement and moved in with my boyfriend.
It wasn’t easy. I wasn’t ready. I was sick. I had a dog. I’m an independent woman, I didn’t want a man to take care of me. And moreover, I didn’t want to live with his guy friends, I was so over that stage of my life!
And a struggle it was.
The move in date alone put me in the hospital. As most people do not understand epilepsy as I didn’t much at the time, physical activity is without a doubt a trigger. Then of course stress. Moving from the home I had been in for five years was hard and I was had been living in North East Minneapolis for almost eight years. I had two major triggers going for me. Then there’s drinking, it can be a hit or miss with epileptics. There can be a tipping point where too much will put us into a seizure, or on the flip side it actually makes us feel better, even too much! I drank a lot that night to ignore the pain of moving and change.
Then a so called friend that was aware that I had epilepsy slipped MDMA in my mouth without asking. I am not even for doing street drugs, but if I’m going to do them it’s going to be where I’m in control and I feel good about it.
By the time I got back home I suddenly dropped to the ground and had an A-Tonic seizure and quickly went into a convulsive seizure. 911 was called. My seizure lasted fifteen minutes and the paramedics had a hard time reviving me. This is very unusual.
Not that I remember this, but in the ambulance, I apparently had another convulsive seizure. They snap us out of by intravenously injecting us with Adivan, in which i didn’t respond to and they had to use something stronger. Once I got to the hospital I had another convulsive seizure, oddly I remember the black out..
The ER Doc told me to breathe in and out, and I began to breathe all of the sudden I was projected into a black hole, outer space perhaps, I was gender free, hairless, spinning and giddy… was this the after life?
I woke up to the doctor trying to stretch out my foot, and then he said, “Next time you get that funny feeling you need to warren me in advance.” I felt so mad. I don’t get these “funny feelings” before seizures everyone talks so much about.