WARNING! Who’s In Charge of YOUR Stability?

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I have found both freedom and safety in my madness; the freedom of loneliness and the safety from being understood, for those who understand us enslave something in us.

Kahlil Gibran, The Madman

For the past four years, my psychiatrists (I’ve had a couple) have deemed it not only necessary, but absolutely crucial, that I be medicated for my bipolar disorder. My current psychiatrist is also a medication specialist, whatever that means, and she has made it her personal crusade to stop any and all fits of delusion or psychosis. I guess that is in her job description, so who can blame her for that? She’s just doing what she gets paid to do.

Just the words delusion and psychosis set people’s imaginations aflame with how horrific these must be to experience, and sometimes they really are, but sometimes they are a blessed vacation from an otherwise tedious and alarmingly boring existence. Medication is supposed to, in theory, help you live a better, healthier and a more stable life. Do you see that I did not add the word happy to that last sentence? My med specialist really doesn’t care if I’m happy. Her concern is that I am not suicidal or believing that the Universe is somehow working through me. If we’ve got those two things under control, then she’s good to go. So, every two weeks for 45 minutes she meets with me to discuss the results of her handiwork. If she is pleased, I go on my way. If she is not, she wants to tinker with the meds. Seems reasonable, right? I guess if you were a psychiatrist, maybe. But, you see the problem is that I have a life outside of those 45 minute blocks of time where I sit in her office fiddling with the purple throw pillows on her faux leather couch.

My life is filled with my family, my friends, my jobs, and my bipolar disorder. I try to ignore the latter most times, but it’s hard. You see my doctor is so hell bent on stopping my cycles of mania and depression that I have become an unwilling participant in the Let’s Prescribe Nicole 17 Pills To Take In One Day game. This is not an exaggeration. At one point I swallowed 17 pills a day in order to fit into my psychiatrist’s idea of stability. Let me describe to you what she considers stable and what that kind of life looked like for me.

Lithium was included. In fact, 2200 mgs (200 mgs short of the highest dose possible) of lithium a day which gave me tremors so bad that I could no longer feed myself. I stopped driving because my vision would blur at any given moment, which almost resulted in me driving off of a cliff. In hindsight, it likely would’ve been classified as a suicide, given my diagnosis of bipolar disorder. In reality it was side effects from the meds prescribed to stop this very thing. On lithium, I have lost my hair, lactated ( I haven’t had a uterus in 7 years) and even gone toxic three times. I did get to travel by ambulance to the ER to be admitted for 48 hours of IV flushing and kidney scans twice. That was so much fun.

Olanzapine gave me akathisia so bad that I thought I was dying. I was alone when it happened and I can only recall flashes of memory. I was writhing in agony, trying to get to my phone to call my then ex. I ended up on the floor of my shower with three chipped teeth and a cut over my left eyebrow. I honestly cannot tell you if I was knocked unconscious, which alleviated the akathisia, or if it just stopped. I just do not remember.

“I do not remember” became my anthem, my go-to phrase in most situations. Time really had no meaning to me, and if it did, I could not comprehend it. I call these next four months “the lost months” as they were filled with respirdone, seroquel, klonopin, loxapine, lamictal, trazadone, topomax, ativan, and the kicker, zopiclone. All of these drugs, and more, were administered under a supervised setting in a psychiatric hospital. I was there for just about a month and a half this particular stint, and I can’t recall a single moment. My failure to recollect has nothing to do with my illness, and everything to do with the medications prescribed to me by psychiatrists. These highly educated doctors who have a duty to work for their patients, to the best of their ability, to assist with improving quality of life. Apparently quality of life is subjective.

Fast forward six months and I have two more stays in the psychiatric unit under my belt. Both were voluntary commitments, under the intense pressure of my doctors and mental health workers. I have now gained 45 pounds from the antipsychotics, and have experienced more mood swings and shifts and suicidal ideation then I ever have in my entire life. I have developed an anxiety disorder that I never suffered from before I was put on ant-anxiety benzos, and I also had a peak in rage issues that can now be traced back to Seroquel. But, the worst part is that I am now fully and completely hooked on sleeping pills. I just cannot sleep without them. The nurses would wake me up in the hospital to take them, they were, after all, ordered by the doctor and I was in no shape to object. Now the problem is that my body is building up a resistance to them because I’ve been on them for well over the two week period that is recommended. So what is the doctor’s move here? Do we wean Nicole off of the sleep meds? Of course not, if Nicole doesn’t sleep, she will go manic! Up the dose of zopiclone, lets go to 15mgs now. And like a good little patient, I took them.

For the next year I bounced through every antipsychotic and stabilizer that you could think of. I no longer had my cycles or swings instead I had reached stability―according to my psychiatrist. She was pleased. I was no longer a functioning human being. I was an emotionless zombie who now hitched a ride as a passenger in my own life. I felt nothing.

It was summer when my daughter showed me a family picture she had drawn. We were all there―her dad, her sister, our pets, and everyone was so bright and colourful. There were rainbows and flowers and love all clouded together in a waxy Crayola masterpiece. Off to the side of the colourful loving family was a black shrouded faceless figure with a gnarled hand that had a thin colored bracelet on it’s sickly looking arm, “Who’s that, Baby?” I asked her. It was such a horrible image to see violating this beautiful picture, “That’s you, Mama,” she smiled up at me, gave me a kiss and took off to play. I jumped off all of my meds that very same day. Two days later I was in the hospital due to seizures.

My psychiatrist at the time chastised me, as did the ER doctor and my GP. I could have died they said. What they didn’t get was that it would have been a relief at that moment. Their idea of stability and keeping my demons at bay was to shut me off like a light switch. As long as I wasn’t delusional, their job was done. No one cared about what my life was like being shut off. No one cared that my kids didn’t have a mom that could function. No one cared that I had started to develop tics from all of these meds and their side effects. No one cared, as long as I wasn’t too high or too low. That was the goal. Who cares about my life and the lives of the people who have to care for me. Just don’t let her go up.

That was three years ago. I’m much better now because I refuse to take the meds they want me to take. I take two stabilizers; one causes a rash so severe that I have to be put on cortisone cream so it doesn’t spread. I am on an SSRI that I can only take in conjunction with the stabilizers or else I become manic, but it causes restless limbs so bad that I am also prescribed a pill for Parkinson’s disease to counteract that. The Parkinson’s pill gives me nausea so bad that I am now prescribed a thick liquid to drink every morning, it’s the same stuff that cancer patients drink when going through chemo. Oh, and the sleeping pills, we’re up to 22.5 mgs of those a night. I’m probably going to have to go to detox to get off this buffet. I just don’t know. I have a new psychiatrist, well two years ago she was new. She has now also started to think that maybe we should shut Nicole off.

I was manic a month ago and she has suggested I try chlorpromazine. She actually used the words, “miracle drug.” She must have forgotten to whom she was talking for a second, I have become quite the med researcher and I think it pisses her off. Chlorpromazine, aka Thorazine, was developed in the 1950s and was used in mental institutions to turn off schizophrenics. It was a miracle all right because it stopped everything except the sightless gaze and drooling that occurred. Why not just set up a frontal lobotomy while you’re at it? In 2015 my psychiatrist still believes that it is better for me to feel nothing then to slip into delusion.

People think that delusion or psychosis is a scary thing. Yeah, it can be, but the most terrifying thing of all is feeling absolutely nothing. Try telling that to a medication specialist and see how far that gets you. This is why so many people go off of their meds. I haven’t even shown you the tip of the iceberg here. I am so pissed off at the entire mental health system that I am now considering safely stopping all meds again, and going from there. I can honestly say that while I did some crazy stuff unmedicated, I have never felt as bad as I did when I was overmedicated. I am an empath. I need to feel my way through life and these meds are messing with my vibe.

I’m not about to run off to Peru and start pounding back the Ayahuasca, although I’d be lying if I said I hadn’t considered it. But I am now starting to question just whose stability is it that I am shooting for? I am okay with my freak-outs at the grocery store every once in awhile. I can handle the swings as long as I can feel my way through them. I am so over, “Your meds need time to work.” I have given up years of my life waiting on these meds to work and the times I have been at my best were when I was the least medicated. I don’t want to give up another second of my life trying to find something to please a bunch of doctors who really could care less. I’m losing precious moments of a life that I actually want to live.

Mindfulness, meditation, supplements, and asking for help when I need it, could be a very real possibility in treating my bipolar disorder. A life filled with emotions and ideas and intensity and flashes of brilliance is ok. To me―stability is not being med-compliant and decreasing the episodes. I have bipolar disorder, the episodes will happen regardless of if I am on meds or not on meds. But if I do as they want me to, without a doubt I will turn back into that black shroud in my daughter’s picture. It does not have to be treated this way anymore. This same cycle of med tweaks and changes every month has shown nothing but failures over the past four years, culminating in a body that is reliant on sleeping pills as if it were heroin. To me, stability is learning how to ride the lows and harness the highs, with as little fallout from the in-between.

I can hardly wait to see what my med specialist says next week.

28 comments

  1. Wow! You just brought back so many memories for me with this piece. Why does it take us so long to stop just “taking whatever they tell you to” and turn into well-informed researchers who make our OWN decisions, hopefully together with our med providers. Or, perhaps I was just slower than some to realize I had the right to say NO! Like you, it was after two psych stays, and a lithium toxicity incident that happened while driving and nearly killed me, that together with my husband we shopped for a new psychiatrist and started over. It wasn’t easy, it took two doctors, but finally….FINALLY! I was my own patient advocate and participated in selecting a med buffet that’s brought me hard won stability. I recommend everyone to read this as a cautionary tale!

    Liked by 2 people

  2. Nicole all I can say is thank you for your honesty …. The parallels I read in your shared experience to that of which my mom led are uncanny …. I hope you will always write. Maybe there is hope in all this❤️

    Liked by 1 person

  3. I have just finished 3 nights of those sleeping pills at 12.5mg. My psych doesn’t allow more than this because of the addictive factor. It’s been helpful as I’m in crisis mode, but I know that tonight I’ll end up not sleeping in my bed because of the associated bad thoughts/memories/feels. But that’s better than addiction, I’m fighting that on one front already, 2 is too much. Aforesaid crisis means I’m also using the emergency 25mg fast release Quetapine as well as the normal large dose of Seroquel (which thankfully doesn’t have any adverse effects with me). I’m glad you’re looking further than the ever changing med cycle. I’m lucky I rarely have mine tweaked (this time because of crisis yes, but only because of crisis), and my psych uses talk and behaviour identification therapy as the first and second line of attack. Your emergency meds are my psych’s idea of something that should only ever be given short term and preferably in hospital. Good luck with the questioning and knowledge, and keep on talking.

    Liked by 1 person

    • I love you, Daniela. There is nothing to forgive. Just keep holding on and trying to be well. Do not give up on yourself. I will NEVER give up on you. You’ve got this, Honey. We all love you.

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  4. I really appreciate how you feel here. My last 8 years have been a medication juggling act and when the doctors though I was most “well” was when I was experiencing no emotions at all and life felt like a meaningless bubble. Great blog and I look forward to following! 🙂

    Liked by 1 person

  5. Wow! Have just read your piece and was blown away. I know the Bi-Polar medication train all too well, and yep now can’t get off the sleepers and Benzo’s. Had a period last year of going of meds for a while but things turned crazzzy! I know I need them, but feel so clouded on them? Anyway, thankyou for your honest and open writing, helps to know others are going through the same experiences. Sometimes I actually think I like riding the crazy train, makes life interesting 😃

    Liked by 1 person

  6. I wonder why they put you on such a high dose of Lithium! I am stable on it at 900 mg/day and when side effects get too much, I reduce it to 600mg/day for a while and then up again. I can basically only take Lithium, Seroquel and Zoloft. Zoloft is out of the question now as my current and best psychiatrist says it causes more mood swings. So that leaves Lithium and Seroquel. Everything else has such bad side effects that I will not not go near any of it by miles. Being stable is good, very good, in my opinion. I hope you find something better. I’d try Lithium at a lower dose. Best wishes and hugs.

    Liked by 1 person

  7. Thank you, Love. I’ve been on a lower dose as well. I think I’ve been on pith four different times now. I’m glad that you have found your stability, I’m still crossing my fingers for a better cocktail 🙂 ❤

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  8. […] packs. As someone who has been relentlessly proactive in her medication process thanks to some seriously fucked up side effects and loss of quality of life, you’d think that I’d be a little more on the ball. You’d […]

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    • And look at this part:

      “I was manic a month ago and she has suggested I try chlorpromazine. She actually used the words, “miracle drug.” She must have forgotten to whom she was talking for a second, I have become quite the med researcher and I think it pisses her off. Chlorpromazine, aka Thorazine, was developed in the 1950s and was used in mental institutions to turn off schizophrenics. It was a miracle all right because it stopped everything except the sightless gaze and drooling that occurred. Why not just set up a frontal lobotomy while you’re at it? In 2015 my psychiatrist still believes that it is better for me to feel nothing then to slip into delusion.”

      It was already on my list, I had already taken it way back when, prescribed BY HER, and she didn’t even go back to her records and check. I adamantly refused something I had already taken for 4 months. WOW, just wow.

      Liked by 1 person

      • Not checking what you had already been on was at least poor practice. And, no doctor should be shooting for complete shut-down, no matter how frustrated they are that their pills aren’t working well. The best goal with bipolar should be a roughly “normal” range of mood variation, or at least tolerably close most of the time, not flat. I very much hope you can find a way to something like that.

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  9. I would love to know how old you were when they diagnosed you with Bipolar. And how did they tell you? I have had a run of it myself and I was 30 but have been this same exact way since i was 6. I ended up sharing it with my daughter which is how I got my diagnosis. We went head to head when she was 6 and we were both on medication with a couple months.

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  10. All I can say is WOW. What an intense story. I have mild bipolar, was on four different meds. They would not give them to me in jail and I am today drug free. So much for that diagnosis. As far as sleep meds, I have to tell you I got quite the education here at the VA: They are actually stimulants that may only help you FALL asleep, not STAY asleep. I took up to 400mgs of Trazadone on the regular until a month ago. I stopped taking them after I learned that sleep meds are one of the greatest snow jobs in modern medicine. After two days I was sleeping like a baby. As for meditation, nutrition, mindfulness, they are slowly changing my entire live: through and through, top to bottom. I cannot overstate the benefits for mindfulness in tough situations, and daily meditation! Do it today! Blessings.

    Liked by 1 person

    • Thank you for sharing that, Rob. That was an older post and have weaned almost completely off now, it was brutal. And I absolutely agree with you, snow job. I swear, some of these psychs are pure evil. I wrote about an experience for a creative nonfiction contest that still gives me nightmares.
      Love to you.

      Liked by 1 person

      • all the meds in the world didn’t keep me from jail, from treatment for alcoholism. And now, with everything gone from my life, I am happier than I have been in over 30 years…go figure

        Liked by 1 person

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