Discussions By Condition: Medical Stories

what's wrong with me?

Posted In: Medical Stories 0 Replies
  • Posted By: digigirl
  • July 25, 2011
  • 07:56 PM

in December 2009, i experienced a bizarre systemic infection. it started one morning when i woke up with the muscles in my low back hurting. i figured i'd just slept wrong. however, as the day wore on, the pain began to spread. by the end of the day, it hurt from my toes to my jaw and down to my fingers, and i could barely walk. within a week, the pain had moved from my muscles to my bones and had settled into all my joints.

since then, i've had reoccurring random joint pain. also, for several months following the incident, my joints were very prone to go out of place. i felt like a puppet that was falling apart.

i was also sick with one thing after another. i had the flu 3 times in as many months. it got to where i was sick more often than not. i also started feeling congested and began coughing a lot. i went to the doctor's several times, and each time they told me my lungs sounded fine.

well, then i started throwing up bloody mucus (around February 2010). i had little appetite, was often nauseous, and had a stomach ache most of the time. it wasn't until August 2010 that someone bothered to look in my nose, find the polyp there, and announce that i have allergies and that the culprit is post-nasal drip.

well, i was very fatigued and lethargic. i also started having heart palpitations. i was sleeping more often than i was awake, and was having a hard time keeping my temperature up. it was running sub-temp around 94-96 degrees quite often, and i was cold in the core of my chest, and was chilled, even while wearing sweats outside in 90 degree weather.

then i started getting frequent mouth and nose sores, and it was taking forever for stuff to heal, and even very small wounds kept ulcerating. i started taking vitamin B12 supplements, as well as a B complex multi-vitamin, because i heard it might help.

about this time, in June 2010, i started getting nauseous from drinking water. i later began throwing up whenever i ate breakfast, so had to stop.

in July 2010, i started getting strange feelings in my head. i described it in my health journal, which i started back in May 2010. "i got this sense of dizziness, but it wasn't a dizzy spell. it happened shortly after i had laid down. it happened twice, each time lasting about a minute, and about 30 seconds apart from each other. it came with this pressure, like the feeling you get when you press on your temple too hard, only it was on my forehead, above my right eyebrow."

around that time, i realized that i had been hallucinating. it usually happened when i was overly tired, so i had always written it off. it wasn't until this one event, when i really realized what was happening. i had just seen a movie, and my parents and i were walking to our car when, laying in the grass, i saw this perfect purple sphere, glowing, with little rays of purple light coming off of it, like a little purple sun laying in the grass. i watched it as i passed by it. then i looked away only for a second; looked to see if my parents were looking at it. then, when i looked back, it had vanished.

i got to the point where i was so fatigued that i could barely walk around my house. i was often light-headed and had frequent dizzy spells.

in early August, my dizzy spells began to change. i felt like i was being pulled backwards from the base of my skull. early August 7th, i was just laying down to go to sleep, and "i got a really strange feeling somewhere in my head... it wasn't quite a sharp pain, but it was sudden and brief, and left me feeling quite dizzy and when i opened my eyes, the details on the wall i was facing seemed to flicker or pulse. it’s hard to describe. i think it continued like that for a minute or two, and then i don't remember. i don't know if i passed out or fell asleep, but next thing i knew, i was waking up, and it was after noon."

the same month, i also started getting numbness in the palms of my hands. it's not like actual numbness or pins-n-needles...it's kind of like there's electricity vibrating just under the skin. it's nervy, but still has feeling, despite giving the vague sense of being numb. since then, the bottoms of my feet have followed suit. recently, while eating at a restaurant with my family, my face suddenly started feeling this way, first in my right cheek, then a second later, in my left. by the time i got home, my whole face, minus my forehead, was like this, as well as my hands and arms up to my elbows, and the bottoms of my feet. i thought maybe it was some kinda food allergy, but i don't know. it only affected my skin, and i took 2 benadryl before bed, and woke up with it gone.

back to August 25, 2010. “i went out and about with my family today... i started feeling really worn out... i was feeling a little car-sick... i was walking pretty slow, and didn't feel like i could move any faster. i didn't have any energy, and as soon as i got inside (the store), i sat down on a bench until we were ready to leave again.
while i was sitting on the bench, my eyes felt tired, but when i relaxed them, they would kind of "jiggle" back and forth a little in a quick motion. within a few minutes, the motion became more, and included some circular motion as well, but was still mostly side-to-side. my eyelids also started fluttering up and down a bit. if i concentrated, i could make it stop, but it got tiring and made my eyes hurt. i also had a sudden feeling of pressure along my cheekbones while my eyes were moving.
when my parents were about ready to go, i stood up and walked over to them. just a moment after that, i had a dizzy spell, in which i felt like i was being pulled backwards by the base of my skull, coupled with dizziness, and a sudden urge to cry that i can't explain. i had to hold onto something to keep me from teetering backwards, and i felt like i might pass out, but i didn't. just after that, the eye movement became much more violent, and i couldn't stop it at all. this time, it was different, however, in that it was a strong pull upward, and i felt like my eyes were trying to roll back into my skull. they kept moving up as far as they could, and then back down closer to the center quite quickly, and at the same time, my eyelids were fluttering and felt like they were being pulled down. this lasted maybe 5 minutes, before it died down."

after that, the involuntary eye movement and hallucinations continued to become more frequent. i would have as many as 30 episodes in a day with the eye movement. i also had sharp pains in my sinuses quite often.

it wasn't until December 2010 that i was told by a doctor that my involuntary eye movements looked like seizures, which was confirmed in April of this year, when my EEG results came back abnormal. i had an MRI done in May, but it came back normal.

by late October, the hallucinations faded away and didn't return again until December. most of November, i didn't have any seizures, either. however, on December 1st, my sister witnessed one of my seizures. this particular seizure was unusual, however, as most of the time i am fully aware during my seizures. this time, there's a small gap of time that i have no memory of. my sister recalls what she saw:

"she was kinda just sitting there staring blankly and looked like she was about to pass out or something. i asked if she was alright... she was all lethargic for several minutes. then she really looked sick and i asked if she was ok and she didn't answer me. then it happened. her eyelids started fluttering and her eyes kinda rolled back a bit and started moving all weird. her eyes were moving really fast, i think the left was doing more side to side while the right one was moving more up and down. it was weird cuz when i pointed it out to mom and dad she had covered up her eyes and grinned strangely, then started crying. it was scary."

from my perspective, i remember sitting on the couch next to her, and i was feeling really sick and lethargic and didn't want to talk. i started having a seizure, and i remember my sister saying "oh wow" and then i suddenly got really emotional and covered my eyes to try to make it stop. i don't remember her looking over and talking to me before the seizure.

near the end of December, i started hallucinating again. i was seeing a lot of fringe objects (that disappear when i look at them) and the occasional direct object (that disappear when i look away from them).

well, this sort of thing continued for awhile. i was finally scheduled to see a neurologist in January 2011. well, by June, this particular neurologist had me taking 8 Neurontin and 6 Dilantin every day.

well, then my feet, ankles, legs, and face started swelling. my aunt just so happened to have had the same thing happen to her, and quickly alerted me to the fact that it was an allergic reaction to Neurontin. so, i weened myself off of Neurontin. since then, i've also cut out my Avandia, as it seems to make my seizures more frequent. i've upped my Metformin to make up for it until i can get back in to see another doctor.

i still have seizures and hallucinations, though a bit less frequently.

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