• 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.

  • Facebook, Social Media and Mental Illness

    Facebook, or social media use in general, brings out the best and the worst traits in humans. When one throws a mental illness into the mix, it can be both calming at times and incredibly triggering.

    As someone with bipolar I disorder, reasons why I like it:

    I have a good family, none of whom live nearby. It often provides a chance to see what is going on without picking up the dreaded phone. Sure, the phone is in my hand as I scroll through the newsfeed but one, that’s just a detail. Two, I have severe phone anxiety and three, the idea of calling to order pizza sends my heart rate soaring over two hundred. Surely you cannot reasonably expect me to have an actual phone conversation just because we share DNA?

    The same can be said for my friends. It is a useful tool to reconnect people whom you remember. Friendships are renewed, revived. We all grew up. For folks like me who came from a small close-knit community, it is nice to see how people are doing. Most of us even got better looking with age. (What is that saying about women and fine wines? EXACTLY.) Let’s face it, we all produced adorable children who may not always behave adorably, but they sure do say some hilarious things that must be shared. And I love seeing all of it, from all of you. And again, that no phone thing.

    Cat videos. Movie trailers. The New Yorker (I heart Andy Borowitz 4-EVA). Thoughtful debate. Divisive debate. The conversations it provokes privately in homes. The friendships it renews. Dog videos. For the love of pugs.

    And lastly the awe-inspiring community of like-minded advocates I have to both grow with and support me. We are all on different journeys and came together through various paths but share one common goal: better care for the seriously mentally ill.

    Reasons why I don’t like it

    Everyone loves a good funny meme to chuckle over. Why not? We need more laughter in such a serious world. My sense of humor is just as good as the next person. What I do not enjoy is the proliferation of mental illness themed memes meant to provoke laughter and merriment over actual illnesses people suffer with. We are battling our minds on a daily basis. People do not post memes inciting laughs and teasing those who suffer from physical ailments. Could you imagine the outrage if you saw one for childhood cancer? Or cancer in general? Parkinson’s? ALS?

    I do not always want to be the heavy. I do not relish pointing out the insensitivities simply because I made a conscious choice to be open with my diagnosis, protecting the many, many confidences entrusted to me since I went public. Yet I will, for that is a privilege of one of the highest honors people could give me.

    The math is simple. 1 in 4 adults have a diagnosable mental disorder in their lifetime. ONE in FOUR.  So if Ann has 640 Facebook friends that means 160 would carry a diagnosis. If Bob has 200 Facebook friends, 50 would. Look around the room you are in. Can you even tell who may or may not carry a diagnosis? OF COURSE NOT! No one will trust you enough to tell you either to use you as a support system when you are then one making fun of their illness publicly, especially without their permission even if you are not even referring to them.  Yes, humor is needed to get through the dark days. My husband and I are known to make horrible jokes about my bipolar disorder to each other to get through the hard times. It stays private, between us.

    There are a couple of memes I want to call your attention to:

    When I put my patient “hat” on, I just do not see how one willingly goes to the hospital unless they know their situation is so dire they will not turn around without hospitalization. Typically, admission occurs with an individual frightened, in tears and feeling that they will die unless they go. Patients genuinely feel backed into a corner and completely out of options. They feel that all medications have failed them. Some patients are involuntarily admitted for concerns of safety and harm, be it themselves or toward others. 

    In my case, each and every time the only reason I signed paperwork for a voluntary admission was because I was told it was better for me that way. I never wanted to go, not once. Not one of my four admissions. The last admission I had my hospital chart stated that if I tried to leave grounds and go home prior to the time a transfer to a psychiatric bed could occur, the police would be called, I would be barred from leaving and committed involuntarily. So much for the voluntary paperwork I signed.


    There is no cool table in the cafeteria. There are tables. Period. People find a seat, eat and leave. Conversation is at a minimum. You might trade muffins. You might barter for cigarettes if you smoke. You might talk meds if you are feeling really feisty and got caffeine in your coffee. At the end of day, you are in a psychiatric facility and what is there to discuss?

    The one I take the most offense to tried to gain traction as a game on Facebook. I found it so triggering, I actually defriended numerous people over this.


    I’ll paint a more accurate picture of how this would look for you

    YOUR ROOMMATE: Up all night crying with a sitter at their side because they attempted suicide and wound up in the psychiatric hospital instead. They are frightened to death to be there. You can’t tell if it is their first hospitalization or their fifth. Perhaps they are most frightened that they are still alive. The tears you hear all night are of a soul in deep, deep pain.

    PERSON LICKING WINDOWS: Is in such severe psychosis it makes you uncomfortable. You wonder why no one is doing anything to break the psychotic state or is his or her mind irreparably broken at this point. You begin to cry yourself.

    PERSON HELPING YOU ESCAPE: Isn’t really helping you escape. They are telling you everything that they think you should know because 1. they want you to view them as the Alpha of the unit and 2. all the things they tell you to the doctors on rounds have absolutely nothing to do with you or your case.

    THE DOCTOR: A person who shows up for five minutes a day, asks how many groups you show up to and increases your off unit privileges based on the answer. Also asks you five or six questions to determine discharge readiness and medications. Never answers family phone calls and punts them to the social worker that avoids you.

    PERSON RUNNING AROUND NAKED: This might make for great cinema, however with 4 hospitalizations and counting I have yet to see this. We get to wear our street clothes to avoid feeling completely marginalized. The more accurate picture is The Person Who Wore the Same Outfit for the Most Days In A Row. See also: Psychosis, because the unit washing machine is bugged and contaminates the clothing.

    PERSON YELLING NONSENSE: This could be anyone. This could be from meals consistently being delivered late when it is all anyone has to look forward to. It could be because no one showed up to visit again and you’ve been there for three weeks. It could be because the same three patient monopolize the one phone on the unit for all 30 patients. Perhaps you are sick of having to do the same kitten puzzle every day from the 1980s as an activity. Maybe five days into your stay, the 6th day suddenly your ponytail is deemed a safety hazard after five days of a nonissue. Maybe you just want a nurse to listen and not push medications.

    PERSON YOU WENT CRAZY WITH: What the Sam Hill is that even supposed to mean? Someone went crazy with me on purpose and got admitted with me on purpose? Now I know the inventor of this little game is just an a$$hole, pardon my French.

    Now I believe we can all agree we have been properly educated and shall think the humor and memes through a little more. After all, I have the best weapon: a graphic designer husband and I am not afraid to use him.

    He is a professional photographer to boot and has made some pretty inspirational memes when asked.