• 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.

  • Dear Former Therapist

    Dear Former Therapist, 

    When you told me I needed to leave your practice that day in 2012 because I was too surly, too out of control, I was too beyond your help, did you know how sick I was? When you left my family and myself without a safety net, could you understand the consequences your actions would later have?

    Would you realize how many therapists would turn me down, citing I was too acute to accept into their practice? Would you know once I found one willing to tackle the challenge of healing my mind, it would take over a month for me to actually be seen? Would you know that they too would find me so ill that they would demand I agree to a higher level of care first?

    Did you see the decline coming? Did you recognize what was happening, woven into the surliness you were refusing to work with? I wasn’t sleeping save a few hours with a cocktail of medications. I was drinking to self-medicate feelings away. I was a waif of a human being, frail, scared and unable to cope with sight of my own shadow. Did you understand what diagnostic clues the trail of self-destruction would lead to? Were you able to see through the muddy waters of all my symptoms and recognize I was misdiagnosed with post-partum depression?

    Could you have predicted that I would attempt to take my life on more than one occasion in the months that followed? Why did you not see, with your expertise that my diagnosis was so much more than depression? Why did you not recognize I needed a new treatment plan written for the mania I was experiencing, which we now know is bipolar 1 disorder.

    Do you understand how much anger I have held in the ensuing years since toward you? Do you understand how much pain could have been avoided with a proper diagnosis rather than a reluctance to do the work and see me – really see me – for the lost, sick individual I was?

    Today I write to not only ask you these questions, but also tell you I forgive you. I Forgive You.

    Your mistake, your failure to properly diagnose me has only made me stronger and more determined. Determined to never accept inadequate care again. Determined to always have my voice heard by my providers.

    Determined to ensure patients never feel they are alone in their journey. Determined to create partnerships with patients, for if the patient buys into their treatment, they are more likely to adhere to the plan over the long term. Determined to foster autonomy when feasible and recognize when it is not.

    I will not fit into the box you tried to place me in.


    Your Former Patient

  • Maintaining a Little Hope

    Next week is Thanksgiving and the official beginning of the hectic holiday season will begin. Since diagnosis, I have learned to live with a pit in my stomach and a hairball of anxiety in my throat from November to January as the trend is for me to have a setback during this season. It is simply stress and as much as I try to anticipate what needs to be done, my brain ends up defeated. I have been thinking a bit more about hope in the last few weeks as it pertains to me, to the season, to evolving moods and to 2017.

    Hope is all I have. Hope that medications continue to work. Hope that I can control my moods. Hope that my disorder remains in remission. Hope that I am a loving wife and mother. Hope that I am a patient and kind friend. Hope that I am a better, more effective provider. Hope that my patients keep hope for themselves.

    2016 has not been the best year for so many of us. I started off rough, with a deep depressive episode. Hope for symptom relief kept me moving forward and out of the hospital. Hope keeps me thinking the year will end differently than it began. I have advocated and spoken to so many congressmen and woman regarding the need for mental health reform. The hope of so many of us got HR2646 passed and we maintain hope that the Senate will soon act, continuing to push reform forward. Hope keeps me in action, showing the “world” exactly what I am capable of even if it’s not in the timeline I would prefer. 

    Four short years ago, I started spiraling down. Four short years ago, I could not recognize the symptoms nor understand that I had a problem. I could not understand I had bipolar disorder. I thought I had an ineffective therapist. Three short years ago, I believed my career was stagnant and over due to my diagnosis. I felt the knowledge of my disorder would preclude me from ever achieving anything further in this life and would ruin my family. Two short years ago I started writing. I started writing to change the way the public viewed mental illness, and in particular a nurse with a mental illness. I did it for myself, to hold onto the hope that my life was bigger than my diagnosis and would mean something to my husband, my children and me. One short year ago, I accepted a position that I never dreamed I would have. Hope always wins when you want it to.

    I suspect one has to be shown hope to have hope. I found hope when a psychiatrist believed in me and told me that during one of my hospitalizations. Prior to that moment I had truly believed I would be spending the remainder of my days in and out of the hospital. Recovering and relapsing repeatedly. I just may still. I cannot predict the future. However I have hope my new-ish pattern of stability and symptom remission will continue.

    What do I look forward to in 2017? I look forward to continuing this career I love. I look forward to working on my doctorate, provided acceptance to a program. I look forward to writing more. I look forward to presenting at a conference. I look forward to continued remission. I look forward to maintain hope.

  • Is it me or Isn't it me?

    “It is you. Not everyone has your diagnosis.”

    We go back and forth in the mental health community about language all the time, how it can hurt, how labels matter (or don’t for some). One infallible truth however is that words do hurt and we can’t take them back. I did an exercise with my children on the day prior to school starting to demonstrate this very point, taking a tube of Aim toothpaste, squeezing the entire tube onto a plate. I asked the kids if they thought they could get the toothpaste back in the tube exactly as it been previously. They laughed and told me “no way!” We reviewed that once words are out there, you cannot put them and some people will never be the same. We took the time to talk about being kind, thoughtful citizens of the school community. I do not know three days into the school how long the toothpaste experiment will last, but we are working on it.

    “It is you. Not everyone has your diagnosis." 

    Not everyone has my diagnosis. It’s true. As of 2014, there are an estimated 5.3 million adults in the United States with bipolar disorder. This statistic does not differentiate between bipolar 1 and 2 disorder. (

    I somehow do not believe words like this can be slung so carelessly at someone however in my situation. Those eight words leave someone, including me, with the impression that my disorder and my symptoms are my fault. I’m 41 years old. I know when I am being a jerk for the sake of being a jerk. I also know when I feel utterly helpless and cannot control my swirling tornado of emotion, thought and word due to a mood episode and resurgence of symptoms. Thus begging the question, is it really me?

    There is nothing I dislike more than my diagnosis and the impact it will wreak on my daily life from time to time. There is nothing worse than hearing your child ask you where Mommy went because “this isn’t my Mommy right now” when you are in a manic rage. It stops you in your tracks, kicks you in the stomach and renders one unable to breathe. It hurts because I didn’t ask for this. I did not ask to become ill. My children didn’t ask for an ill parent either. All of us (the kids and myself) asked for love and some understanding of our behaviors. The kids, because they are immature with developing brains and will do obnoxious things at times. Me, because I cannot achieve remission again without love, patience, time and a solid treatment team.

    “It is you. Not everyone has your diagnosis.”

    Not everyone has my diagnosis, and the things I CAN control are simple: putting down the phone and staying away from social media when it’s bothersome to me and liable to set me off. Sitting down every single night with the kids for dinner. Instituting family time every single night regardless of how tired I am. Bedtime snuggles and hugs. I can show my kids how much Mommy is always there, even when my brain is misbehaving, neurotransmitters have run amok and makes it physically impossible.

    I can’t put the toothpaste back in either. All I can do is work as hard as possible every day to make sure I never squeeze it out in the first place.

  • Mania, the Remix

    Raise your hand if you love a good remix. Personally, I am all about the remix. My current favorite is the Mike Posner “I Took a Pill in Ibiza” See B remix taking a lovely acoustic song and transforming it into a jam worthy of the finest kitchen dance party one was ever invited to. There are always exceptions to the remix rule and the original holds, such as the current Calvin Harris /Rihanna collaboration “This is What You Came For.” Strictly the original please for my tastes.

    I Took a Pill in Ibiza, remix, Vevo        

    This Is What You Came For, Vevo

    Raise your again if you are wondering what this has to do with mental illness. I assure you plenty. Now I am in the midst of what feels like the Calvin Harris of all remixes – manic episode with mixed features.

    DSM V criteria of a manic episode with mixed features states: “Full criteria are met for a manic episode or hypomanic episode and at least three of the following symptoms are present during the majority of days of the current or most recent episode of mania or hypomania

    -       Prominent dysphoria or depressed mood as indicated by either subjective report or observation made by others.

    -       Diminished interest or pleasure in all, or almost all, activities (as indicated by either subjective account or observation made by others

    -       Psychomotor retardation nearly every day (observable by others, not just subjective feelings of being slowed down).

    -       Fatigue or loss of energy.

    -       Feelings of worthlessness or excessive or inappropriate guilt (not merely self-reproach or guilt about being sick).

    -       Recurrent thoughts of death (not just fear of dying), recurrent suicidal ideation without a specific plan, or a suicide attempt or specific plan for committing suicide.

    The mixed symptoms are observable by others and represent a change from the person’s usual behavior. The mixed symptoms are not attributable to the physiological effects of a substance (e.g., a drug of abuse, a medication other treatment).

    Let’s review (briefly) a manic episode: a distinct period of abnormality and persistently elevated, expansive or irritable mood and abnormally and persistently goal-directed activity or energy, lasting at least one week and present most of the day, nearly every day (or any duration if hospitalization).

    During the period of mood disturbance and increased energy or activity or activity, three (or more) of the following symptoms (four if the mood is only irritable) are present to a significant degree and represent a noticeable change from usual behavior

    -       Inflatable self-esteem or grandiosity

    -       Decreased need for sleep (e.g., feels rested after only 3 hours of sleep)

    -       More talkative than usual or pressure to keep talking

    -       Flight of ideas or subjective experience that thoughts are racing

    -       Distractibility (i.e., attention too easily drawn to unimportant or irrelevant external stimuli), as reported or observed

    -       Increase in goal-directed activity (either socially, at work or school, or sexually) or psychomotor agitation (i.e., purposeless non-goal-directed activity).

    -       Excessive involvement in activities that have a high potential for painful consequences (e.g.’ engaging in unrestrained buying sprees, sexual indiscretions, or foolish business investments).

    The mood disturbance is sufficiently severe to cause marked impairment in social or occupational functioning or to necessitate hospitalization to prevent harm to self or others, or there are psychotic features.

    The episode is not attributable to the physiological effects of a substance or to another medical condition.”

    (Taken directly from the text of the DSM-V, section on bipolar disorders)

    How is my mixed episode playing out? I’ve met the criteria for mania through well over a week now of increased-goal directed activity, less sleep, more talkative, flight of ideas, distractibility and the buying sprees. The mixed component? Decreased mood, thoughts of worthlessness, crying daily, fatigue and thoughts of death.

    I don’t want to have another episode. I wanted to blame my irritable, hateful state on the state of the world today. That is not going to go over well either. People are going to be haters, but my disorder is life-long with periods of relapse and remission. My pdoc is on vacation and the coverage in his office always throws more benzodiazepines at me to solve the problem. That is not what I need. What I need is to lose the fear of speaking up about my mood and getting help with the team I trust the most is unavailable.

    When I changed specialties for my nurse practitioner practice, I guarded my stability and current remission state more carefully than the gold at Fort Knox. I slept, I deceased alcohol consumption, and I took my medications more faithfully than ever before. On a visceral level, I know that this episode is not my fault. I know this episode happened to just occur in spite of the best care possible.

    Here is what frightens me the most about this mixed episode. One, it caught me off guard and I could not recognize it for what it was for several weeks, as I have never experienced one before. Two, I am scared to speak up without my treatment team in town. I am a medical provider and people rely on me. Unless you stand in my shoes, you cannot possible understand what it is like to keep your brain held together for 8 hours every day, in a state of constant adrenaline because patients will always come first and to cause harm would cause you to go to the depths of hell. Three, do I need a medication change – AGAIN?

    Lastly, I fear I will become a victim of the system. I worry my disorder will claim me versus the other way around. I constantly worry about being just another statistic of this brain disease.

    It’s not quite Vegas for this remix and I don’t have a huge crowd cheering me on unlike our dear Calvin, though.