resaebiunne
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WARNING: Extremely long post. 
onder: Edit: In order to submit this post, I have to divide it into two posts to comply with the forum software.
This post serves as a kind of history and story of my life with respect to my medical issues. I was thinking I would type it up to bring to my epileptologist but now I'm wondering. Anyway, it will be useful for my therapist appointment and possibly my psychiatrist appointment. I dunno, maybe not. I want to keep this brief (edit: that obviously hasn't happened!) because time is limited during the appointment, but I also want to convey the details of my history as best I can. Feel free to read through this post and and leave any comments or questions you might have.
Since I've had epilepsy from a young age, there is a lot I don't remember in regards to my treatment; obviously being younger, it was my mom who was responsible for my care during that phase of my life. My mental illness treatment and diagnoses has always been overseen by myself since that didn't onset until I was living on my own at age 26. With regards to my epilepsy, it has only been in the past 2.5 years that I have been responsible for my treatment and you'll understand why in a bit.
Please note: I am going to track down my medical records (mom has most of them from when I was younger), and I would like to update this post. This serves mostly for personal reasons of course, but I would like to fill in some of the missing details of my medical history so I can better track them. Things like dates, medication dosages, etc. are details I would like to track on a personal level.
The story begins one random Saturday morning in Springfield, VA. It was about 8AM in the morning and I woke up having those "shakey things". I actually remember having them at a younger age but I never thought about them and nobody ever witnessed me have one. The seizures as I remember them at the time were the same as they are now except with less severity: I would hear a brief rumbling sound and my head would shake a bit. This particular morning it was happening constantly. I was fully aware of what was going on through the seizures. My parents took me to the emergency room at Fort Belvoir, Virginia and I was put on an IV of which medication I don't remember (I do have medical records and could pull them up if needed). I was referred to see a neurologist at Walter Reed Army Medical Hospital (which at the time was not a veterans hospital).
At Walter Reed, I saw several neurologists. I had EEGs done, typical one hour EEGs with hyperventilation and photic stimulation. The EEGs did come back abnormal. I believe I may have had an MRI at the time: I've had several MRIs, including one recently (we'll get to that). I've never had an abnormal MRI or anything unusual show up on one. I was started on Depakote ER at a dosage I do not recall, but I took the medication 3 times a day. I was not regular at taking my medication.
At some point in the future, I had a surgery. I believe it was a cosmetic surgery that was to attempt to correct a lazy eye. If I remember correctly, this would've been my second surgery (if not, third). The surgery was done at Walter Reed AMH and during recovery I went status epilepticus for the second time. Again I was conscious during the seizures, typical head shaking with rumbling noises. I was given an IV of an anti-epileptic drug; it was the same drug I was given the first time I went status while I was in the Fort Belvoir ER. There were no complications and the seizures stopped within a few minutes.
I remained on the Depakote. Fast forward a few years. We moved to Oviedo, FL. Now in Florida, I needed to be seen by new doctors to continue on medication. I remember being seen by a few different doctors, for whatever reason I do not know. I do know that the last doctor I saw did not think my epilepsy warranted medication and so I was taken off of Depakote. At this point, I would've been around 15 years old. The thought was that given the state of my condition at the time that I should be able to drive and not have to deal with the medications. Despite my diagnosis of epilepsy, it was for this reason that I never considered my health to be impacted, or even that I had epilepsy at all.
Here's the thing, and this is a bit of a personal addon. I did continue to have seizures, however they were infrequent. Maybe once per week? Also, there are at least two occasions on which I know I blacked out. I can tell you this now, however at the time I would not have been able to describe what had happened as a seizure. I will not go into detail on this here.
Fast forward to around 2012. I had moved to Austin, TX and was now living alone in a 2 bedroom apartment in Downtown Austin. I was working full time and had graduated with my Master's degree the year before. At this point, I believe I was starting to experience symptoms of bipolar. I was functioning at work and generally had no problems. I had poor sleep hygiene and would typically spend all weekend sleeping. I would say it wasn't so much depression at that point as just pure boredom: I didn't have any close friends and I wasn't adventurous enough to get out of my apartment having just moved to an unfamiliar place. I have no family in Austin. Things gradually got better, however the bipolar symptoms were becoming more prominent. I remember being paranoid at work, believing that cameras were watching me. One day while driving to work, I thought there was a camera in the back window of a car pointed at me. I thought I was on the news or something. Despite this, I was never to the point of being unable to function at work, or at least not that I was aware of.
During June of 2014 is when I began to go into psychosis. At the time, I didn't know what was going on, but having had so much time to introspect I can clearly see that I was in psychosis. I was having both visual and auditory hallucinations. One particular week was extremely bad and it was because of that week that I ultimately started towards treatment for schizoaffective disorder. I wasn't diagnosed with SZA until later. One particular night during this week, I had gotten home from working and was chased around downtown Austin by a group of voices that were following me. It sounded like a bunch of girls trying to chase me and laugh at me. What was weird is that, when I would walk, the voices would get quieter. When I stopped, the voices got louder as if they were getting closer. I would see people on the sidewalk cuss at me. I showed up late to a department meeting at work, and so I stood up in the back. As I stood there, I had an itch and so I scratched my nose. Someone appeared to turn around and look at me while I did so and then I could clearly hear "Did that guy just flick me off?". This angered me and so after the meeting I complained to my manager. After that, I met him at his desk to discuss it and nobody had heard anything. However despite this, one of the people in the cubes not too far away appeared to be peering overing his cube wall and looking at me and saying mean things like "Is that guy complaining about me?". This was Wednesday of that week. The following day some other similar experiences had continued and so I went to the on-site health clinic. I was sent to the emergency room at the Austin Diagnostic Clinic.
At the ER, they did blood work, an EKG, a CT scan, and some other tests. Ultimately I had a teleconference with an emergency psychiatrist and he stated that I was on the bipolar schizophrenia spectrum leaning towards bipolar. I was sent home with a referral to a psychiatrist. I started seeing a psychiatrist at Northwest Psychiatry in Austin, TX who put me on Saphris after diagnosing me with psychotic disorder NOS. This would be my first diagnosis. No significant testing was done to reach this diagnosis, however the medication did help with regards to the hallucinations.
Fast forward about a year. Things were going okay at work but I was having some trouble. I had moved from downtown Austin to an apartment complex right next to where I worked so I could walk to work everyday (up to this point I had always been able to drive, I was just tired of the commute). I started having sleep issues. Suddenly I started needing way more sleep than usual... on the order of 10+ hours a night. What would happen is I would catch up on sleep during the weekend, but by midweek I would be sleep deprived and crash. So come Wednesday or Thursday I would get in to work late, sometimes I took a sick day off. At one point, I had gotten a warning that I would violate my work's absenteeism policy because I was taking too much sick leave in too short a period of time. (What a waste that was, it would've been better to take off MORE time than less but I'd have to explain the policy for you to understand why that was the case). At the time, I was looking for jobs to try and move back to Florida. This was not because of my health issues necessarily. Mostly I was just ready to move on.
Around mid-June of 2015 I quit my job in Austin. I had packed up all my stuff and arranged to move to St. Petersburg, Florida. I set the start date of my new job for July 6, 2015, which gave me a week and a half to move and get settled in. I wanted to get into my new job as soon as possible so I could minimize financial "downtime".
The night after I got the keys to my new apartment and had moved in, I woke up at 3AM completely wide awake. Not awake as in fall back asleep, "awoke from a dreak" awake, I mean *WIDE AWAKE*, could not back back to sleep awake. My left shoulder was absolutely killing me out of nowhere. I believe this was my first tonic-clonic seizure, or at least a seizure severe enough to cause me severe pain. At the time, I did not know what had happened. The pain in my arm was so bad that it lasted several weeks. Fast forward a few more days. After moving in, my family went back to Orlando (St. Pete is a 2 hour drive from Orlando) and I remained. A few days later, on Wednesday evening I drove from St. Pete to my mom's house. I had forgotten to take my Saphris with me so that night at my mom's house I did not sleep. The next morning I woke up status epilepticus. I called a friend and told him to pick me up and take me to the ER. As he was getting ready and driving over, I had a tonic-clonic seizure as verified by my mother, who had happened to video it and show it to my neurologist later. I don't remember what the ER did about the seizures, I suppose they stopped on their own after the tonic-clonic. I was sent home from the Oviedo Medical Center ER.
The next few days were uneventful although without my Saphris I was very tired, but okay. Eventually on Sunday I drove back to St. Pete as I had to start work the next day. On July 7, 2015, it was a normal workday. After work I went to a bar and had some beer. When I got home, I remember walking into my apartment. Next thing I know I was waking up from a dream. I thought I was at a friends house and I was too tired to work. I had lied down on the floor and was taking a nap. My friend was stacking heavy boxes on me to keep me from moving. I was on my stomach and had to pee. I heard voices. I saw my sister and friends and they were laughing at me as I was trying to move around. I had to pee really bad; so bad that it was leaking out. My friend had put a ladder so I could pull myself up, but he had put it away from me so I had to squirm to get to it. I was trying so hard to move, but I just couldn't. Eventually out of sheer pain I had to wet myself. I started to realize I was alone in my apartment but I wasn't sure. The voices started to scare me. I wanted to call out for help. The voices told me not to but I did anyway. After calling out for help, someone heard me and called 911. I thought I was hallucinating the person knocking on my door so I called out for help again but I heard another knock so I stopped. At some point, they got the key to my apartment and entered and a police officer showed up. Now, I have a collection of beer bottles. And of course, one of the first questions they asked me was "What is the last thing you remember?" to which I had to say I had gotten home from the bar. They thought I was drunk. It was around 11AM, Thursday, July 9 when they took me to the ER. I had been unconscious on the floor of my apartment for a day and a half. The paramedics arived and did their thing. They cut off all my clothes, laid me out like a mummy, put me on a gourney, and even put me in a neck brace. I was transported to Bayfront St. Pete hospital ER which coincidentally was one street away from where I lived.
I remember bits and pieces of the ER. I was extremely thirsty and had bitten my tounge so there was dried blood all over my teeth. I couldn't talk right. I remember at one point a lady came to collect my insurance info. At my new job, my benefits didn't start until I had worked there for 3 months. I hadn't yet received my COBRA paperwork in the mail so they treated me as an uninsured patient (which is easily corrected later, but still a hassle). At another point, they were doing an X-RAY and I snapped back to reality when my shoulder made the most strange movement. At another point in the ER, I remember when one of the staff rudely shoved a bag of saline in my face as he hooked it up to the drip. I couldn't read the words on the bag because the paramedics left my glasses behind at my apartment.
Anyway, I was eventually admitted to the Bayfront hospital. I was suspected of having had a stroke. I don't remember much of my stay there. Late on Thursday night I was wheeled to a room (presumably from the ICU) where I slept for the night for a few hours. I wanted to call my mom, but the nurse told me it was like 3AM heh. When she came in, in the morning, around 6AM, she let me call my mom. The next thing I remember is my family being there telling me I was about to have surgery. I had fractured and dislocated my right shoulder and the surgery was to re-locate (open-reduction internal fixation or ORIF surgery). I feel forward onto my stomach and my shoulder popped out the back side so my surgery was unusual according to what the orthopedist to me later (which one of the accompanying doctors seemed very excited about).
onder: Edit: In order to submit this post, I have to divide it into two posts to comply with the forum software.This post serves as a kind of history and story of my life with respect to my medical issues. I was thinking I would type it up to bring to my epileptologist but now I'm wondering. Anyway, it will be useful for my therapist appointment and possibly my psychiatrist appointment. I dunno, maybe not. I want to keep this brief (edit: that obviously hasn't happened!) because time is limited during the appointment, but I also want to convey the details of my history as best I can. Feel free to read through this post and and leave any comments or questions you might have.
Since I've had epilepsy from a young age, there is a lot I don't remember in regards to my treatment; obviously being younger, it was my mom who was responsible for my care during that phase of my life. My mental illness treatment and diagnoses has always been overseen by myself since that didn't onset until I was living on my own at age 26. With regards to my epilepsy, it has only been in the past 2.5 years that I have been responsible for my treatment and you'll understand why in a bit.
Please note: I am going to track down my medical records (mom has most of them from when I was younger), and I would like to update this post. This serves mostly for personal reasons of course, but I would like to fill in some of the missing details of my medical history so I can better track them. Things like dates, medication dosages, etc. are details I would like to track on a personal level.
The story begins one random Saturday morning in Springfield, VA. It was about 8AM in the morning and I woke up having those "shakey things". I actually remember having them at a younger age but I never thought about them and nobody ever witnessed me have one. The seizures as I remember them at the time were the same as they are now except with less severity: I would hear a brief rumbling sound and my head would shake a bit. This particular morning it was happening constantly. I was fully aware of what was going on through the seizures. My parents took me to the emergency room at Fort Belvoir, Virginia and I was put on an IV of which medication I don't remember (I do have medical records and could pull them up if needed). I was referred to see a neurologist at Walter Reed Army Medical Hospital (which at the time was not a veterans hospital).
At Walter Reed, I saw several neurologists. I had EEGs done, typical one hour EEGs with hyperventilation and photic stimulation. The EEGs did come back abnormal. I believe I may have had an MRI at the time: I've had several MRIs, including one recently (we'll get to that). I've never had an abnormal MRI or anything unusual show up on one. I was started on Depakote ER at a dosage I do not recall, but I took the medication 3 times a day. I was not regular at taking my medication.
At some point in the future, I had a surgery. I believe it was a cosmetic surgery that was to attempt to correct a lazy eye. If I remember correctly, this would've been my second surgery (if not, third). The surgery was done at Walter Reed AMH and during recovery I went status epilepticus for the second time. Again I was conscious during the seizures, typical head shaking with rumbling noises. I was given an IV of an anti-epileptic drug; it was the same drug I was given the first time I went status while I was in the Fort Belvoir ER. There were no complications and the seizures stopped within a few minutes.
I remained on the Depakote. Fast forward a few years. We moved to Oviedo, FL. Now in Florida, I needed to be seen by new doctors to continue on medication. I remember being seen by a few different doctors, for whatever reason I do not know. I do know that the last doctor I saw did not think my epilepsy warranted medication and so I was taken off of Depakote. At this point, I would've been around 15 years old. The thought was that given the state of my condition at the time that I should be able to drive and not have to deal with the medications. Despite my diagnosis of epilepsy, it was for this reason that I never considered my health to be impacted, or even that I had epilepsy at all.
Here's the thing, and this is a bit of a personal addon. I did continue to have seizures, however they were infrequent. Maybe once per week? Also, there are at least two occasions on which I know I blacked out. I can tell you this now, however at the time I would not have been able to describe what had happened as a seizure. I will not go into detail on this here.
Fast forward to around 2012. I had moved to Austin, TX and was now living alone in a 2 bedroom apartment in Downtown Austin. I was working full time and had graduated with my Master's degree the year before. At this point, I believe I was starting to experience symptoms of bipolar. I was functioning at work and generally had no problems. I had poor sleep hygiene and would typically spend all weekend sleeping. I would say it wasn't so much depression at that point as just pure boredom: I didn't have any close friends and I wasn't adventurous enough to get out of my apartment having just moved to an unfamiliar place. I have no family in Austin. Things gradually got better, however the bipolar symptoms were becoming more prominent. I remember being paranoid at work, believing that cameras were watching me. One day while driving to work, I thought there was a camera in the back window of a car pointed at me. I thought I was on the news or something. Despite this, I was never to the point of being unable to function at work, or at least not that I was aware of.
During June of 2014 is when I began to go into psychosis. At the time, I didn't know what was going on, but having had so much time to introspect I can clearly see that I was in psychosis. I was having both visual and auditory hallucinations. One particular week was extremely bad and it was because of that week that I ultimately started towards treatment for schizoaffective disorder. I wasn't diagnosed with SZA until later. One particular night during this week, I had gotten home from working and was chased around downtown Austin by a group of voices that were following me. It sounded like a bunch of girls trying to chase me and laugh at me. What was weird is that, when I would walk, the voices would get quieter. When I stopped, the voices got louder as if they were getting closer. I would see people on the sidewalk cuss at me. I showed up late to a department meeting at work, and so I stood up in the back. As I stood there, I had an itch and so I scratched my nose. Someone appeared to turn around and look at me while I did so and then I could clearly hear "Did that guy just flick me off?". This angered me and so after the meeting I complained to my manager. After that, I met him at his desk to discuss it and nobody had heard anything. However despite this, one of the people in the cubes not too far away appeared to be peering overing his cube wall and looking at me and saying mean things like "Is that guy complaining about me?". This was Wednesday of that week. The following day some other similar experiences had continued and so I went to the on-site health clinic. I was sent to the emergency room at the Austin Diagnostic Clinic.
At the ER, they did blood work, an EKG, a CT scan, and some other tests. Ultimately I had a teleconference with an emergency psychiatrist and he stated that I was on the bipolar schizophrenia spectrum leaning towards bipolar. I was sent home with a referral to a psychiatrist. I started seeing a psychiatrist at Northwest Psychiatry in Austin, TX who put me on Saphris after diagnosing me with psychotic disorder NOS. This would be my first diagnosis. No significant testing was done to reach this diagnosis, however the medication did help with regards to the hallucinations.
Fast forward about a year. Things were going okay at work but I was having some trouble. I had moved from downtown Austin to an apartment complex right next to where I worked so I could walk to work everyday (up to this point I had always been able to drive, I was just tired of the commute). I started having sleep issues. Suddenly I started needing way more sleep than usual... on the order of 10+ hours a night. What would happen is I would catch up on sleep during the weekend, but by midweek I would be sleep deprived and crash. So come Wednesday or Thursday I would get in to work late, sometimes I took a sick day off. At one point, I had gotten a warning that I would violate my work's absenteeism policy because I was taking too much sick leave in too short a period of time. (What a waste that was, it would've been better to take off MORE time than less but I'd have to explain the policy for you to understand why that was the case). At the time, I was looking for jobs to try and move back to Florida. This was not because of my health issues necessarily. Mostly I was just ready to move on.
Around mid-June of 2015 I quit my job in Austin. I had packed up all my stuff and arranged to move to St. Petersburg, Florida. I set the start date of my new job for July 6, 2015, which gave me a week and a half to move and get settled in. I wanted to get into my new job as soon as possible so I could minimize financial "downtime".
The night after I got the keys to my new apartment and had moved in, I woke up at 3AM completely wide awake. Not awake as in fall back asleep, "awoke from a dreak" awake, I mean *WIDE AWAKE*, could not back back to sleep awake. My left shoulder was absolutely killing me out of nowhere. I believe this was my first tonic-clonic seizure, or at least a seizure severe enough to cause me severe pain. At the time, I did not know what had happened. The pain in my arm was so bad that it lasted several weeks. Fast forward a few more days. After moving in, my family went back to Orlando (St. Pete is a 2 hour drive from Orlando) and I remained. A few days later, on Wednesday evening I drove from St. Pete to my mom's house. I had forgotten to take my Saphris with me so that night at my mom's house I did not sleep. The next morning I woke up status epilepticus. I called a friend and told him to pick me up and take me to the ER. As he was getting ready and driving over, I had a tonic-clonic seizure as verified by my mother, who had happened to video it and show it to my neurologist later. I don't remember what the ER did about the seizures, I suppose they stopped on their own after the tonic-clonic. I was sent home from the Oviedo Medical Center ER.
The next few days were uneventful although without my Saphris I was very tired, but okay. Eventually on Sunday I drove back to St. Pete as I had to start work the next day. On July 7, 2015, it was a normal workday. After work I went to a bar and had some beer. When I got home, I remember walking into my apartment. Next thing I know I was waking up from a dream. I thought I was at a friends house and I was too tired to work. I had lied down on the floor and was taking a nap. My friend was stacking heavy boxes on me to keep me from moving. I was on my stomach and had to pee. I heard voices. I saw my sister and friends and they were laughing at me as I was trying to move around. I had to pee really bad; so bad that it was leaking out. My friend had put a ladder so I could pull myself up, but he had put it away from me so I had to squirm to get to it. I was trying so hard to move, but I just couldn't. Eventually out of sheer pain I had to wet myself. I started to realize I was alone in my apartment but I wasn't sure. The voices started to scare me. I wanted to call out for help. The voices told me not to but I did anyway. After calling out for help, someone heard me and called 911. I thought I was hallucinating the person knocking on my door so I called out for help again but I heard another knock so I stopped. At some point, they got the key to my apartment and entered and a police officer showed up. Now, I have a collection of beer bottles. And of course, one of the first questions they asked me was "What is the last thing you remember?" to which I had to say I had gotten home from the bar. They thought I was drunk. It was around 11AM, Thursday, July 9 when they took me to the ER. I had been unconscious on the floor of my apartment for a day and a half. The paramedics arived and did their thing. They cut off all my clothes, laid me out like a mummy, put me on a gourney, and even put me in a neck brace. I was transported to Bayfront St. Pete hospital ER which coincidentally was one street away from where I lived.
I remember bits and pieces of the ER. I was extremely thirsty and had bitten my tounge so there was dried blood all over my teeth. I couldn't talk right. I remember at one point a lady came to collect my insurance info. At my new job, my benefits didn't start until I had worked there for 3 months. I hadn't yet received my COBRA paperwork in the mail so they treated me as an uninsured patient (which is easily corrected later, but still a hassle). At another point, they were doing an X-RAY and I snapped back to reality when my shoulder made the most strange movement. At another point in the ER, I remember when one of the staff rudely shoved a bag of saline in my face as he hooked it up to the drip. I couldn't read the words on the bag because the paramedics left my glasses behind at my apartment.
Anyway, I was eventually admitted to the Bayfront hospital. I was suspected of having had a stroke. I don't remember much of my stay there. Late on Thursday night I was wheeled to a room (presumably from the ICU) where I slept for the night for a few hours. I wanted to call my mom, but the nurse told me it was like 3AM heh. When she came in, in the morning, around 6AM, she let me call my mom. The next thing I remember is my family being there telling me I was about to have surgery. I had fractured and dislocated my right shoulder and the surgery was to re-locate (open-reduction internal fixation or ORIF surgery). I feel forward onto my stomach and my shoulder popped out the back side so my surgery was unusual according to what the orthopedist to me later (which one of the accompanying doctors seemed very excited about).
