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paranoia
  • Seroquel. Or, A Frank Discussion of Side Effects.

    Fucking Seroquel. Sometime I get so mad at it and think what a bullshit drug. Twice a day every day down the hatch. It’s a second-generation anti-psychotic (2GA) commonly used to manage conditions such as schizophrenia, bipolar 1 mania, acutely depressed bipolar patients, and treatment resistant generalized anxiety disorder. It also gets used to help these populations sleep, adjuvant treatment for antidepressants, or manage aggressive behavior in dementia patients. I got placed on it when my first-generation antipsychotic was not effective for a deep-rooted paranoia and anxiety I was experiencing post ECT in the fall of 2017. I was keeping curtains and blinds closed. I was keeping doors locked. I was immensely fearful once the sun set. I became fearful of potential peeping Toms and lived with the constant worry of home invaders. I sat in chairs terrified that “something” was out in the yard just waiting for the perfect moment or opportunity to enter the home. All the “something” needed was for a resident of the home to let their guard down, open a door, a blind, a window, a curtain. I was not rationale. Words did not reassure me or convince me otherwise. I need medication, order and routine. Thus where perphenazine failed, Seroquel was begun.

    We started at 50 mg nightly with the understanding it would help me sleep. Fatigue is a side effect. I had taken to sleeping with the bedroom door open and all the lights on both in the bedroom and in the upstairs hallway and bathroom. I was also sleeping limited hours. Normally, I am in bed at 8 pm with the door shut and nary a single sliver of light visible. The 50 mg got me sleeping, though the lights remained on. After a couple days my mind felt a tiny bit quieter with behaviors unchanged. I had the nagging feeling we could do better. Seeing that my psychiatrist wanted to start the Seroquel at 100 mg initially, I increased my dose to 100 mg (or two 50 mg tablets) nightly. It appeared as those the paranoia was quieting down from both my and my husband’s perspective. I still slept with the lights on. I still checked the locks and the curtains, but the noise in my head was quieter.

    Then the pacing began. I had to pace night after night. I couldn’t explain why I had to pace, I just felt the inexplicable urge to be in motion at all times. If I tried to stay still, the discomfort I felt from the lack of motion was exquisite. I wish I knew what to tell you it felt like other than my insides were on fire. Then the vaginal pressure started. You heard me. Vaginal pressure. My lady parts felt full and painful and to look at them, they were engorged. I became convinced first that I had vaginitis. Thank god my mother was is town visiting, because 11 o’clock at night and I’m dragging my husband to the 24 hour pharmacy 10 miles away to buy Vagisil hoping it will make the feeling down there disappear. Nope. Then we start with the feeling I had to urinate all the time with the pressure, except I wouldn’t necessarily pee. I became convinced it was either a UTI or yeast infection. Night after night we are making midnight trips to pharmacy for Monistat or cranberry juice, seeking any over the counter remedy I can conceive of. Nothing would ever work. And I paced endlessly, always beginning around 9:30 pm ending sometimes around 2:00 am passing out from sheer exhaustion.

    We reviewed everything trying to isolate the cause of the pacing and lady parts gone bananas when we noticed all the issues began after taking the 100 mg of Seroquel at night. We also recognized none of these behaviors/symptoms occurred on the 50 mg dose. My body hated the 100 mg but my brain liked it. I spent some time re-reviewing the known side effects: fatigue, weight gain, dizziness, hypotension, increased appetite, irritability, tremor, hyperglycemia, extrapyramidal symptoms, akathisia (hello, check!); when there it was: priapism. I wasn’t having that as I’m not a man with a painful 5-hour erection that require medical attention but I was having clitoral erections that uncomfortable as hell and distressing. I brought this to the attention of my psychiatrist who expressed a healthy dose of skepticism. Fair enough, who wouldn’t? We agreed to split my dose of Seroquel into 50 mg twice daily.

    In a not-so-surprising turn of events, the akathisia (compelling urge to pace and be in constant motion) and clitoral erections/vaginal pressure disappeared. If anything, perhaps once every three weeks I might find it necessary to pace for approximately ten minutes or so, then feeling at ease enough to stop. 

    Slowly this medication has quieted my brain and slowed me to be more function in my home in the evenings. I do a quick check of the lock and curtains, and then move on. I’m not hypervigilant anymore and I can hold a normal conversation. It’s not perfect. But we are able to see the progress due to the Seroquel.

    I constantly wonder if we’d see more progress if we could increase the dose. However this bullshit drug that I am dependent on causes some bloody miserable side effects that are intolerable to my life. I call it bullshit I know I could benefit from a higher dose yet it’s inaccessible to me. Just another roadblock for those with mental illness.

    I mean come on. Painful clitoral erections. It sounds like something made for a television sitcom, straight out of The Mindy Project or It’s Always Sunny in Philadelphia. And we don’t spend enough time talking about the side effects. Who feels comfortable around their peers really discussing what happens? Especially if their doctor is skeptical to begin with about said side effects?  But let’s talk about side effects openly. We can revisit the day I pooped my pants – wait I take that back – I had the Niagara Falls of diarrhea erupt while walking down my driveway while starting Lamictal. All I could do was stand at my front door and cry while my husband got me a towel and pray the kids didn’t see me.  We don’t talk about why I don’t wear my hair down presently because it is so thin from having taking Lithium to stabilize my mood and there isn’t enough regrowth yet to wear it down.

     We don’t talk about these things. If you join a Facebook group for support, you get chastised for discussing medications and get to feel more alone when maybe, just maybe you wanted to know if someone else is taking some bullshit Seroquel to be a functional person too.

  • Even The Mighty Fall

    Buckle up kids. It’s been a long while since I have felt well enough to write and I have a lot to say today. You see, I’ve been talking to you for the last few years, educating you and advocating for others from the enviable position of having my bipolar disorder being in a stable state of remission. Remission is a beautiful thing. In some ways it’s almost as seductive as mania, only remission when sustained over years can make you feel as if you will never get sick again. Now those who follow this blog regularly know I deal with bipolar 1 disorder, most often associated with the oft-reckless highs of mania. However 40% of bipolar patients are initially diagnosed with unipolar depression. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2945875)

     

    Depression is a far more common mood episode and apparently I am no exception. In mid-late August I presented to my psychiatrist with my husband for concerns over an increasingly low mood at which point all I can recall is collapsing in his office and sobbing uncontrollably. It’s a blur, to be honest. A decision was made that I needed to be hospitalized for a course of ECT (electroconvulsive therapy) as it was felt there was not time to wait for medication to work. I felt too poorly to argue which said something to both my doctor and my husband given my feelings on repeat hospitalization after the last experience four years ago. We went home to pack a bag and give me the opportunity to say goodbye to my three boys.

     

    The psychiatric ER, which served as the entry point for my admission, was a strange experience. My psychiatrist had to coach me on what to say when I arrived as his desire for my admission alone was not sufficient to meet the criteria that would ensure I would have a bed waiting. My husband was not allowed to visit and sit with me except during certain hours. I was not allowed to “just have” the bag I packed. It had to be inspected and locked away. Anything I had at my bedside required a physician order. The attending psychiatrist who came to determine if I actually would be admitted is on my town’s Board of Education. I recognized the name immediately. Heck, I even voted for the guy. (That should have counted for something, but I was afraid to ask.) I told him everything my psychiatrist told me to say, although a phone call still had to be placed to my psychiatrist to discuss my case and whether or not admission and ECT truly was the best option. Dude. Seriously? I. CANNOT. STOP. MOTHEREFFING. CRYING. I don’t care if I live or die at this point. Just make the pain stop.  They decide I will get admitted but tell me it may take days to get a bed. I push them to start the pre-ECT testing process while I am still in ED so it is done by the time a bed opens up. Luckily I get a bed the next day.

     

    I’ll confess. I do not remember much about my admission. I was severely depressed and significantly anxious. I did not both to interact with any other patients. I refused to leave the unit to attend groups or go to meals. I refused to attend groups on the unit. I spent my time sleeping pretty much around the clock. I did meet with my treatment team each day. I came out of my room for visitors – my husband visited everyday and my dear friend Barbara came once in addition to calling every day. It is the first time I allowed non-family to visit me. I went to ECT. The team adjusted my mood stabilizers and when they stated I could go home after my second ECT treatment, I held them to it, even when they tried to back track expressing a desire to keep me there longer.  The hospital is a tough environment. It’s challenging to find fellow patients to connect with, particularly when your mood is so low that you just don’t care to talk to anyone else or you feel so anxious any behaviors they do cause you to isolate further. In hindsight, I can’t even tell you if I slept so much due to major depression (likely) or to escape (also a very strong possibility).

     

    I was discharged to home to attend ECT three times per week. Monday, Wednesday and Fridays. No driving while this process was occurring as I was receiving anesthesia regularly. One of the known side effects of ECT was the risk of memory loss, typically thought to be transient and slowly return once the series of treatments is complete. There are two types of ECT, right unilateral and bifrontal. (https://www.mayoclinic.org/tests-procedures/electroconvulsive-therapy/basics/definition/prc-20014161) (www.psych.med.umich.edu/ECT/common-side-effects.asp) Fortunately my providers have a strong interest in the cognitive effects of ECT on the patient. I had to undergo baseline cognitive testing and then periodic cognitive testing during and after treatment to measure any rate of memory loss.

     

    ECT took place in the basement of the psychiatric hospital. I would get brought into a six bed holding area. They would place a cardiac monitor on me and start an IV line. Before every session I would get a dose of Zofran to quell any nausea and Labetalol, a beta-blocker, to lower my blood pressure. When it was my turn, the attending psychiatrist of the day (there were three who reliably rotated through) would come wheel my stretcher over to the area in which ECT was being performed.  There another nurse and my anesthesiologist greeted me. Electrodes were placed on my head. I had 17 treatments in total over 6.5 weeks; 14 were right unilateral treatments, 3 were bifrontal in an attempt to mount a more robust mood response. Anesthesia provided Toradol, a powerful anti-inflammatory to stop the aches I typically complained of later, usually in my jaw as well as my anesthetic. Off I went to sleep and woke up in recovery later. After a half-hour of monitoring by the nursing staff, I was delivered back to my husband and able to go home.

     

    Due to the anesthesia, I couldn’t have anything to eat or drink after midnight on treatment days. My husband always stopped at Starbucks and got me a chai latte to sip on when we were driving home. Once home I retreated to the bedroom to take a nap still feeling fatigued from the anesthesia. Or some days I might choose to nap on the couch and pretend to pay attention to the television. I did find I had the attention span of a gnat. The longer my course of ECT ran, the worse it got.

     

    As I explained before, memory loss is a serious side effect of ECT. When I underwent ECT in 2012 I experienced some. It eventually came to the point where I finally had to learn to stop calling my husband a liar, trust that he was telling the truth and just reply “I don’t remember, but that sounds nice.” I went into ECT this time optimistic and hopeful that no memory loss would occur given all the cognitive testing they were doing. Part of me also worried they would not know if I had memory loss as they were administering tests to me that I give my dementia patients all day long every day. I mean I was going to rock those tests with one hand behind my back and my eyes closed. Well, let’s just say now I understand why we tell patients depression can impair cognition. I certainly was not thinking straight at the start of treatment. With regards to memory they do right unilateral first as it’s been shown through both research and experience to have the least impact on memory. However my team moved me to bifrontal, as they felt right unilateral was not making enough of a difference in my mood. It became apparent rather quickly that the bifrontal was impacting my memory in a negative way.

     

    This was rather stressful as I work using my brain all the time. I am a nurse practitioner highly reliant in my knowledge and intellectual capacity. I already deferred graduate school one semester due to the mood episode and now recognized deferring a full year was the most reasonable and rational course to take. As always, I feared never getting my memory back.   I chose to stop the ECT against medical advice due to the rapid nature of memory loss. That was probably of the hardest decisions I have ever made regarding my care. Even now as I write this I have to ask my husband so many questions about that time as it’s “foggy” “hazy” “blurry” and I cannot trust my own brain for accuracy.

     

    What happened next is I was left a shell of myself. I had zero interest in anything or anyone. I became quiet. Afraid. Anxious. Paranoid as Fuck. The minute light started shifting in the sky all curtains in the house had to be pulled and blinds closed. I was convinced people were able to see in or coming to get into the home. This irrational fear of peepers or home invasion existed within my brain.  (We live in a rural wooded area and there are limited neighbors.) I would, and still do, go around checking all the doors ensuring they are locked. My husband couldn’t understand why at 3:30-4:00 pm I would be pulling the curtains and my only answer would be “because.” If a door got opened for any reason, I’d start shrieking to close it and be unable to stop until the door was closed and locked again. I couldn’t have the lights off at night. I had to sleep with the lights on in the bedroom.  Not a nightlight. The actual lights. When we lost power with a recent storm, I insisted flashlights be on in the room all night to quell the anxiety I felt.

     

    The symptoms were brought to the attention of my doctor. Initially I was placed on a first generation antipsychotic to try to decrease the paranoia and improve my functioning in the home. Unfortunately it did not work. I was unable to allow Halloween decorations this year as I found the theme and spookiness of the holiday too distressing. It fed the paranoia. I continued to struggle with sleep as the hours of darkness were simply serving to make my soul distraught. My husband called my doctor and told him we needed a change.

     

    I came off the first generation antipsychotic and went onto a second-generation antipsychotic. My brain seemed to like it better however I needed to have the dosing adjusted a bit to find the magic number. It’s fatiguing and helps me sleep; however at higher doses caused some akathesia (feeling of inner restlessness and compelling need to be constant motion) and other uncomfortable side effects. It finally felt like the paranoia was coming to a dull roar. I still come home and check locks, ensure the curtains are pulled though as of one night ago I slept with the lights off. (Baby steps, people, baby steps.) I have a need to have every day the same if I can manage it. If my husband watches one more episode of Shark Tank in the evening I suspect he might lose it.  I hate to be alone in the dark. My office manager walks me to my car in the evening. It’s been tough on my husband. He tried to go to the grocery store one evening and I cried at the thought of being alone in the house without him here. It worked only by him promising to be gone no more than a half-hour and to call/text me every step of the way.  He recently had a nighttime photo shoot and a friend came to “babysit” me until he returned.

     

    Given that there is still a level of impairment and I have still been checked out of portions of my life with some concerns for mood beyond the paranoia, at the next medication check visit we added more. We added a low dose SSRI cautiously as the goal is to improve my mood, decrease my anxiety and improve my functioning without inducing mania. My psychiatrist also added a benzodiazepine for emergencies.

     

    I think we finally have the right combination, now I just need to wait patiently for me to return bit by bit. It’s not going to happen overnight. It’s been a long three and a half months. My family has really suffered with this particular episode, as I have been physically present in this house but emotionally completely checked out. Nothing hurts more than to hear your child ask “Mommy, are you still sick?” and you genuinely have no answer for them.

     

    I do have to say my friends, my family, this town I live in have been incredible during the worst days. They all proved mental illness can be a casserole illness. From those who came and simply lay next to me in bed when I was too sad to move, from all those who took the time to make and leave a meal for my husband and children, from the little trinkets that showed up in the mail, the bouquets of flowers, the Facebook friends who showed up at my door in real life and lifelong friends who dropped everything to be at my side and family who came to help with needed: we thank you for the kind gestures and stigma-busting attitudes.