My epilepsy and mental illness stories/history

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resaebiunne

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WARNING: Extremely long post. :ponder: 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).
 
At Bayfront, I was seen by a neurologist who started me on Keppra. They did an EEG (while I was sleeping, not sure since family was there). I was given my Saphris, I was also temporarily given Abilify, put on a medication for a urinary tract infection, and whatever other drugs they had me on. I continued to see the same neurologist for a few months. After being discharged from the hospital I recovered at home at my mom's house for a few weeks because of the shoulder surgery. I returned to work after about 2.5 weeks. I had appointments at the orthopedist for x-rays and to check the healing of the scar. Eventually I was able to start rehab for the shoulder, which was twice a week for about 6 weeks.

Not long after starting work, I started seeing a neuropsychiatrist at the USF Department of Neuropsychiatry in Tampa, Florida. The psychiatrist I saw referred me for a full panel of blood work ($1000 worth!) as well as referred me to a neuropsychologist who did a 4 hour battery of tests. It was around September of 2015 that I was officially diagnosed as having schizoaffective disorder bipolar type. I was allowed to continue on the Saphris, but I was also started on Lamictal (I'm not sure if I have kept track of what dosage that was, but it's probably here on the forum somewhere in another thread).

Around the same time, I was continuing to have seizures (the minor "head jerks") and I was getting concerned so I went back to see my neurologist. I was a bit frustrated because she didn't seem concerned... she ordered and ambulatory EEG and increased my dose of Keppra (to 3000mg/day). I had the ambulatory EEG done (for which I took yet more time off of work!) and the results came back abnormal. What was odd was that the neurologist did not seem concerned and did not request me to come back into her office.

Now I'm not sure, but sometime in July I had applied for a drivers license. This would've been before I wound up in the hospital... At the time of trying to get my drivers license I wasn't able to pass the eye test, so the attendant rejected me and told me to have an eye doctor approve me for driving. Eventually I had that done, but after the hospital stay. I waited until around December to go back to the DMV and get my drivers license after the 6 month period of "no seizures" had elapsed. Up until that point I had not had any tonic-clonic seizures, but I was still having the head jerks. From this point on I'll refer to them as myoclonic jerks since I believe that's what they are. When I went back to the DMV and was honest and told them that I had a seizure and so they sent me to another DMV. That DMV told me they would mail a form to my doctor for approval to get my drivers license. Well, they mailed ME the form, so I had to mail it to the doctor myself. On top of that, the doctor charged me to fill out the form. So a doctor who knew I was still having seizures (the abnormal ambulatory EEG) and did not bother to change my medications or find something that would work, rejected my request for a drivers license. Several weeks later I received a letter stating that my drivers license was being medically revoked. So I haven't been able to drive since February 1st, 2016.

Anyway, that was the last of my problems. On January 19, 2016 I was laid off from my job after only 6 months. I was given two weeks of severance pay and 3 months of subsidized COBRA (at least they did that much) and walked me out of the building quite unexpectedly. I believe I had an appointment a few days later and a friend was coming to St. Pete to take me to the appointment, so at that point I just decided well, I'm just going to go nuts sitting in my apartment all day, so why not just go back. It was also at that point that I decided I would send an email to a professor at the University of Central Florida who I used to work for and volunteer in his lab. Sure enough he offered me a job, part-time, which was great. So at that point I had some source of income and COBRA for decent insurance (albeit at a cost of $550/month).

So we get closer to the present.. however the details get a bit more dense here. I don't want to stay up too late writing this as I'd like to go to work tomorrow, but maybe I'll just stay up. I have good tunes right now and I'm on a roll.

Now that I was is Oviedo (just outside of Orlando) where my mom lives, I had a problem with doctors appointments. My neurologist wasn't doing me any good and one day a friend drove past the Orlando Epilepsy Center. I called them up and made an appointment. I have been seeing Heng Chai Lai (and more recently a fellow colleague of his) since about February or March of 2016. For a while I continued to see my neuropsychiatrist back at USF, however that became difficult as driving 2 hours one way to Tampa for a simple doctors appointment got to be a big deal. Around mid-Spring of 2016, I started seeing Giselle Bolt (ARNP) at APG Health in Orlando. She is currently my psychiatrist. (And I am also going to see a therapist in December, also at APG Health).

Upon my initial visit with the OEC, I was referred to their epilepsy monitoring unit. The monitoring unit is a privately run but very well done environment for a 5 day video EEG. They do a standard EEG but the entire place has cameras, and if you want to roam around they put a battery onto the recorder and you can talk with others who are there. One thing I noticed was that some people never came out of their rooms. They had TVs and board games and puzzles. I started a puzzle but didn't have and desire to finish it, heh. Anyway, typically they sleep deprive you and take you off meds to try and induce a seizure. In my case, I have multiple seizures a day and my seizures correlated with the little button thingy they give you to press, so they did not attempt to induce a seizure and instead increased the dosage of Lamictal that I was already on. I believe I was on 300mg/day after that change (and still at 3000mg/day of Keppra).

At subsequent follow up appointments, my seizure frequency increased as my dosage of Lamictal was further increased. One thing I will point out, is that after the stay in the EMU, I wrote a little tool to log my seizures. I have actual data proving the correlation of my seizure frequency to the dosage of Lamictal that I was on. (Around December 2016, I stopped logging my seizures.). Eventually I was taken off Lamictal (late last year?) and started on Depakote and I spoke to my psychiatrist (in USF at the time) to also put me on Depakote as a mood stabilizer and take me off Lamictal the rest of the way.

Unfortunately, I was hospitalized again December, 2016. A combination of not taking medication, probably being on too low a dose of medication, and alcohol caused me to go status again. I was at my aunt and uncle's house in Cape Cod, Massachusetts and woke up at 3:30AM having myoclonic jerks. I managed to fall back asleep only to wake up at 4AM still having seizures. I was concerned about having a tonic-clonic seizure so I called 911. I was picked up by an ambulance and taken to the ER. I only remember bits of pieces of the ER... I remember the doctor asking where I was and then I blacked out. The next thing I remember is being wheeled out of a room on a bed into a private room. I was at the Boston Medical Center. There was a man working at a hospital computer and I was watching him. Eventually I asked him "Are you done working yet?" as if I was waiting for him to finish something. I kept taking the little red heart-rate monitor they put on your finger off to see how far I could take it off without setting the alarm off, heh. I do not remember leaving the ER at Cape Cod or any of the ambulance ride, but I do know that the trip cost around $3k, and that I was given an IV during the ambulance ride. According to my dad, it took 7 different drugs to stop my seizures. I'm not sure if I trust his opinion on the matter. I was in the hospital for about 3 days and my dad was very upset. I had decided to stay up north to visit family for a few extra days, which I should not have done without acquiring extra medication. The resulting medical records clearly state "not compliant with treatment" on them. In turn, this has caused me some problems with my family, namely my dad.

It is now 2017 and time has passed quickly. After 18 months, I found a new job that is appropriate for my career and I am back in the game. I am currently at 3000mg/day of Keppra and 2000mg/day of Depakote, 15mg/day of Saphris, and 80mg/day of Propranolol for tremors. I have extremely bad tremors in my hands, but it is sometimes noticeable in my voice (briefly). I have an appointment with a GP on Friday for my tremors. I was seeing a neurologist back in Austin for tremors before I was on any medications, so I don't believe my tremors are necessarily caused by the medications.

So now we're at today. I took 3 days off work last week (Tuesday, Thursday and Friday) and Thursday the week before that. I'm having sleep issues and irritability. I'm not sure if it's the Keppra or the bipolar, but I was totally out of whack. As I described in a PM, hypo-mania is like a box in an otherwise empty room. Stress is like a light. When you're stressed out, you can see the box (the mania). During my days off and my weekend, with the stress gone (the light), I don't see the symptoms of the mania. The thing is, anyone could go in the room at take the box away. Medications aren't 100% all the time, this is all too clear especially now. So I know that when I show up to work tomorrow, I'd better be extra cautious. The other problem is that, people just understand the issue. They see the results of my carelessness and call me out on it, which just adds stress. A friend called something that I posted while I was upset "slander". Maybe it is, I'm not going to look up the definition of slander right now, but being upset is being upset whether you're bipolar or not (I'm not sure that a private comment on Facebook consists of slander). I feel the way I do about things despite my bipolar, I just have to try to control my emotions more. The problem in my mind is I tend to be too nice about things. I got mad, so later I'll blow it off. The other problem is, I may be new to my job, but I have a right to raise my voice and be heard. I don't want to be a corporate cow. Taking time off from work might look bad, but the consequences of confronting people in an emotional state can be worse, especially with bipolar. I genuinely felt wrong. Wrong to the point of needing help just about. I had to help myself. Now I just hope I don't show up to work with an angry boss! :eek:

Looks like I've made it to the end of this post. If you've made it this far, like I have, thanks much for reading! :banana::banana::banana::banana: This was about 3 hours worth of writing, so now I'm going to go back and read it. Please note that I will be making edits to this post as I make updates, thanks.
 
I read your novel. :)

Epilepsy messes with the brain and memory. Schizoaffective disorders mess with the brain and memory. Medications for both can mess with brain and memory. So very hard when your brain is being assaulted at its core on so many fronts.

On top of all that, balancing antipsychotics and anti-seizure meds can be a delicate process (Saphris can lower seizure threshold in some people, Keppra can exacerbate mood swings, Depakote's anti-seizure properties are enhanced by Keppra, etc.), so being able to take the meds consistently under consistent supervision of a skilled and experienced neurologist is ideal. Ideal, but not always achievable in the Real World.

Which is to say, I wish you luck with the multiple issues your are confronting (including the family conflicts you have mentioned elsewhere). And congratulations on continuing to work through it all. :)
 
Thanks for reading Nakamova. The way you put it makes this seem like a delicate balance, but I've hardly ever perceived it that way. Given what the ER psychiatrist said, it would seem I was already bipolar before I was on Keppra, but it's anyone's guess. I never perceived any Kepprage like others have.

I went to work today, although I went in a bit late (I got in at 8:30AM). My colleagues don't arrive until 9:30 so I think it's best for me to get to work when they do, at least for now. Although tomorrow I will have a new challenge on my plate... we are going to start working on the code for another test so I'll have some more work to do. I'm going to talk to my supervisor about working at home some as I think that would help me out a bit.

I stopped at the health clinic on-site while I was walking to my desk (I walk by it every morning) and spoke to a nurse. She gave me a number for a 24/7 counseling service and the contact for an HR person to speak to. The good news is that for now, I have what they call personal time so long as I don't take more than 5 days in a row. It's actually paid time off and it doesn't require formal approval. I want to verify and check with HR that I'm not breaking any rules, but the reaction from the nurse I spoke to was positive. Unfortunately, starting next year, they are making major changes to company policies and I will only be allowed 5 personal use days (currently, you can take unlimited sick leave, if you can believe that). Since I won't qualify for FMLA until August of next year, it's going to be a long stretch. I will talk with my psychiatrist about this and see what kind of arrangements I can make for the future... I can go on short term disability but it would require doctor approval. I'm feeling a bit apprehensive about talking to HR though. I did tell my supervisor casually that I have a mental illness and he seemed to understand.

Anyway, it was refreshing to get back to work today and especially to have a new challenge put on my plate. I'm feeling motivated right now and much more energized :woot:

I have ONE 5mg tablet of Saphris left for tonight, thanks to a run-around with Express Scripts. Express-scripts said they needed approval from my doctor to refill the prescription. Waited a week; nothing. Called them up, was told they hadn't received anything. Called my doctors office on Tuesday to be told they sent out the prescription. Also, Express-Scripts was a bit dodgy with the copay. I'm on 15mg of Saphris a day, and my doctor prescribed a 10mg tablet and a 5mg tablet (there is no 15mg tablet) in two prescriptions. So in August when I went to pick up my prescription at Publix, they charged me $375 for 30 days worth of meds. So, while I was on the phone with APG Health, I explained this to them and my psychiatrist wrote a new script for 3x 5mg tablets per day. This means a 90 day supply of Saphris for $350 copay. Slimey bastards. APG Health was great in faxing over the prescription quickly and resolving the issue. :clap: I upgraded the shipping on my prescription order so hopefully it will be here tomorrow. I'm going to have to leave work early to make sure I can pick it up from my apartment office. This will be the first time I've completely run out of meds...

Epileptologist appointment in the morning. I think I'm just going to tell my doctors to bump the Depakote to max, go big or bust. I don't think the Depakote is working, TBH.
 
Well I had my epileptologist appointment this morning. I thought it went rather well. My doctor is putting me on Topamax and was concerned about my weight gain. I've gained almost 50 pounds over the past 5 months since starting Depakote! I've always been skinny, so this isn't neccessarily a bad thing but it's certainly alarming. It's a sigh of relief to know it's the meds because I was getting concerned about it being age and simply having to eat better (which I should anyway, but that's another story).

I'll be ramping up to 200mg of Topamax/day over the course of 2 weeks and weaning down to 1500mg/day of Depakote. Then after my next visit in a month, I'm going to be off of Keppra (completely). This is a HUGE jump so I'm a bit concerned, but my epileptologist says the Depakote will prevent any tonic-clonic seizures and the Topamax will help with the jerks. He also mentioned that Topamax is used for tremors so it should help with that as well. I told him that I have an appointment with a GP on Friday and he said it was a good idea to do so to make sure there are no other factors inolved with the tremors. He has the name of my GP and he sent over his records for her use.

One thing he mentioned about the Topamax was an increased risk of kidney stones and that I should drink lots of water. The topic of soda came up and also caffeine. I tend to drink a lot of Coke and Dr. Pepper lately, especially in the evening after work. So I'm going to have to switch to caffeine free soda. Fresca seems to be a good choice, or Root Beer. I like Fresca because it has no calories and it tastes good. However, caffeine free Coke will have to remain because I like my rum n cokes on the weekend :) Maybe I'll just start wearing my cycling hydration pack all the time so I'm never without water.

Oh well, more later.
 
Probably a good idea to slowly taper off of the caffeine, to avoid any potential withdrawal symptoms. I was always a soda drinker, but since sodas of all kinds have been linked with a higher incidence of stroke, I've switched to seltzer.
 
May 23, 2019: Started on 2.5 mg of Prolixin, started taking prescription on May 25. Noted severe drowsiness immediately on taking first dosage which lasted 4 or 5 days or so and resulted in my missing a few days of work. Eventually the drowsiness went away. Dosage of invega sustena lowered to 9 mg from 12 mg.

Hand tremors very bad. New psychiatrist at Green Ridge Behavior Health in Gaithersburg, Maryland says she will try me on new medications for tremors when my antipsychotic medications are dialed in. I have a new neurologist lined up who can hopefully adjust my anticonvulsant medications. I need to get off of Topamax since I had a kidney stone back in March and I wound up in the hospital. I have only been taking half of my dosage of depakote and topamax (yes, I know...). Psychiatrist requests lab work records from previous neurologist with depakote and thryoid levels.
 
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I hope you can get the right combo of meds to stop the tremors and the seizures and preserve your mental health...
 
Well I got fired today so I have no idea whether or not I will be able to manage my treatment any time soon. This is so freaking frustrating when I need to get my meds adjusted so badly.
 
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