When Medications Go Wrong

For years, I’ve pretty much been medicating myself.  I take my scripts home and medicate how I see fit for my situation.  I realize that makes me medication non-compliant.  The trouble I come to is my trust in doctors.  I have been burned so badly before that I find I have a lack of faith in them to know how they are really treating me.

When I was in my teens, and being treated for Major Depressive Disorder (misdiagnosis – strike one), I was put on high doses over a slew of medications for years with little result (overmedication – strike two).  I suffered extreme side effects, with little done to relieve them.  I took Zoloft in increasing doses over a three year period.  I continued to complain of extreme fatigue, anxiety, motion sickness, and periods of flu-like symptoms.

The doctor’s answer?  More medication.  It came to a head when I found that if I sat still for too long, I would drift off to sleep.  Sitting in school became impossible, and I was sleeping fourteen to sixteen hours a day.  Eventually, I was put on 300 mg of Zoloft with Provigil to combat narcoleptic symptoms.

It was at the doctor’s suggestion that I continue to exceed maximum dose and go to 350 mg that my mother finally put her foot down.  “Put her on something else.  We’ve put three years into this, and it clearly isn’t working.”  And much to my doctor’s chagrin, I was switched to Lexapro.

Wrong answer.

Immediately, I started to have dissociative symptoms.  I recall laying in my room, laying on the floor, and staring at my ceiling in the dark.  My mother stood in my doorway, just observing me.

“What are you doing?” she asked.

“Nothing,” I answered blankly.

Yes, I was finally awake.  But, every moment was torturous.  I lost my sense of self, and started to drift away.  My memory began to fragment, and I sunk into a deep, desperate depression.  I was frantic and crazed, while feeling numb and blank at the same time.  I became paranoid, and started to assert that everyone was doing things against me.  They were intending to harm me, and I started to give meaning to harmless comments and phrases.

I attempted suicide several times in the first month.  The cutting became so bad that I was doing it in rather public places.  I was caught one time at my boyfriend’s house, and I had a dull exacto set ripped off of me and immediately chucked into the local creek.

We were unaware of all of the side effects at the time, because all of the medications I was placed on were brand new.  When a pharmaceutical representative left her office prior to my visit one day, it became clear that I had become an experiment to brand new medications.  I was taking expensive, largely untested medications for her financial benefit.  Strike three.

I had gained thirty-five pounds over a six month period.  I was 4’11” and 165lbs.  That put me at a BMI of 33.3, and in the obese range.  And despite all of my best, and even worst, and unhealthy efforts, I still couldn’t manage to get my weight below 145lbs.  I was starving myself on 900 calories a day, and I still hovered around obesity.

I couldn’t afford my medication once I was kicked off of my parent’s insurance, and I just decided that since it failed to ease my symptoms, I would stop taking the medication entirely.  They failed to mention that if I attempted to stop the medication cold, then I would be stricken with the worst withdrawal I had ever known.  It was a good thing my parents had been through this before with my father, because they knew how to ween me off.

It took me years to get the rest of that weight off.  But, by then, the medication had already done long lasting damage far worse than just weight.  I had begun to develop a drinking problem.  I had engaged in risky sexual behavior due to hypomania.  And it sent me walking with bad eating habits.

After that, I distrusted doctors and medication entirely.  I had lost faith in mental health treatment.  I was left with a feeling that I didn’t have a disorder at all, and instead, it was just me.  I was convinced that I wasn’t treatable.

It took a lot to make me realize that I was in desperate need of treatment.  I had taken psychology courses and was suggested by several psychologists in my college to have bipolar disorder.  I knew my behavior wasn’t “normal”, just as I had always suspected.  It took the my marriage, my depleting mental health of my husband, and the birth of my son to encourage me to start treatment again.

Three years, four doctors, and a another slew of medications later, and here I am, again the victim of overmedication and bad medication choices.

Recently, I stopped my Abilify.  Admittedly, it was because I noticed an interaction between the Abilify and my weekend consumption of alcohol.  I started to find that I would fall asleep soon after taking it on Friday’s while we drank.  I decided that I would just stop over the weekend, and continue during the weekdays as normal.  But, eventually, I just forgot to take it at all.  And soon, I started to notice an improvement in my worsening condition.

Suddenly, I was able to think again.  I started to feel more like myself.  I became more aware of what I was thinking and feeling, and I finally started actually living in the world around me.  It actually felt like living again.  And that’s when I noticed the weight I had put on.  I had fell victim to Abilify’s weight gain, among other things.

I can blame the dissociative symptoms on Abilify.  It had created an emotional flattening, and I started to dissociate from myself and my world.  It had robbed me of my ability to write and care for my family appropriately.  I wasn’t feeling, so I wasn’t caring.

The anxiety?  Well, I recently started to run out of a supply of Wellbutrin I can’t really afford right now.  I started to cut back to make ends meet, and I discovered that was starting to subside.  Other than rebound depressive symptoms, I was feeling better.  It didn’t matter to me anyway.  I was still going through crying jags, whether I was taking the Wellbutrin or not.  The difference was between whether they were loaded with distressful urgency to cut or not.  I decided that I would prefer to keep my near streak of four months without cutting.

I don’t blame my doctor.  He’s an old school doctor who works off of the biological model and treats symptoms.  I have declined therapy several times, though my requests to be seen since have not been honored.  All of my symptoms point to mild psychosis in general, aggravated by extreme life stressors.

I blame myself for not listening to myself and taking action sooner.  Treatment happens on both ends, and I have not been holding up my end of the bargain.  I have not been mood charting, and I have not been notating subtle symptoms.  It has become abundantly clear to me since my extreme meltdown and psychotic break during the summer that I had been probably Bipolar 1.5 all along.

Though I don’t experience full on mania, I do experience mild psychosis, practically all of the time.  I have not been pressing the issue about invasive thoughts, paranoia, “The Voice”, or any of the mild hallucinations that I experience.  Only when I had my break did I bring it to my doctor’s full attention.  And I was met with extreme medication.

Personally, I’m at a loss as to what to do.  I’m damned if I do, and I’m damned if I don’t.  I noticed last night that “The Voice” has returned, even if it’s benign (right now).  I don’t want to be overmedicated, and I can’t risk gaining anymore weight.  The weight is worse for my mental health than anything else.

And it completely screws up my bodily function.  Now, I’m experiencing weight related problems again.  My knees and back hurt.  I have acid reflux near to the point of anorexia again.  Sexual dysfunction is destroying my sex life, my self-esteem, and hurting my marriage.  And I’m back to full on social anxiety, because I’m too self-conscious to function.

But, at the same time, I’m aware that I need some kind of medication.  While, for now, I’m better off without it, the day will come where I am asked to step up, and perform at a higher function.  My family, including Finn, has been very great about my general lower function and picking up a lot of the slack for me.  However, this won’t last forever.

23 thoughts on “When Medications Go Wrong

  1. Such a great cautionary tale – even if painful, it’s a great reminder to the rest of us. I get thrown 2-3 med changes at a time sometimes, and it’s impossible to separate out what med is doing what to me in terms of both benefits and side effects. It’s really frustrating.

    I’m getting to the point where I want to just go off everything and start fresh. I know I can’t really truly do that, but damn, I’m sick of this. I’m only partially functional despite 3 daily psychoactive meds. Lately the side effects include nausea. My appetite is on-again off-again. I’m occasionally struck with this empty-brain thing that leaves me just sitting and staring. All of this is not normal. I don’t know what to do – I just want to feel OK for more than a couple days or a week at a time.

    • Oh, goodness, am I at that special point right now! I’ve been thinking that if I could ween myself down to here, and I’m relatively okay, how are these medications even doing me any good? I don’t want to promote that way of thinking, so I try to keep it under wraps. Besides, I’m not sure how much of that is me talking, and how much of that is symptom. I know it’s part of BP to get into some delusional thinking, not to exclude medication. I can’t say that I’m free of delusion right now. Even as symptomatic as I am right now, I’m still more stable than I have been for the entire year.

      A whole year of symptoms. How discouraging! I know exactly how you feel about wanting so much to feel better than just a few days out of the week. For me, I might get a couple of good hours a day.

      I couldn’t do the empty brain thing. I’m not working right now, so a lot of my spare time is spent on WordPress. And I would just sit there and stare at the blinking cursor. What do I write about today? I tried to follow a train of thought, but I’d hit a wall pretty quickly. Everything came in fragments, and I’d find that I just had nothing to say. I am more thoughtful than that! I started to become unable to access long term memories, and my social anxiety worsened, because I just couldn’t find anything to talk about. When I started to lose access to my more recent memories, like little details about my relationship, I was done.

      I have to wonder, how much of being well is being ignorant and empty?

      That gets me into another topic I wanted to touch on in another post about wellness, symptom, personality, and how do we possibly balance them? I feel like, how much of myself do I have to lose to feel better? I start to think I don’t want to lose anything, and then i feel like I’m choosing illness. It’s not fair and it’s not right. Should I be obligated to make a choice?

    • I just want to say I feel like I wrote this and all i will say is topamax.

  2. I have been struggling with this for years as well. First, I took all of the meds that they wanted me to. When I had a side effect, they would add more meds to counter act the side effects. I gained a hundred lbs in about nine months. So, since then I have been trying different combination. Leaving off some meds to hopefully stop the weight gain. Nothing happens except I might stop gaining more. But then eventually I would have to go back on those meds and gain again. NOw, I do with as little as I can get by with. A lot of my symptoms, I have just accepted as just parts of who I am. NO, I still can not go to walmsrt if my life depended on it. I still feel a panic coming on when I have to go somewhere on a day that I don’t feel right enough to be out. Like today, I have a Dr appointment and I have been homebound for days since I had to go and stay with my mom for two nights last week. But I like being able to feel emotions (most of the time) and I like just playing it by ear. I too think that most doctors perscribe whatever the pharmacutical company has just sent a representative in to pitch to the doctors. I also can not really trust anything they perscribe. That is why I have stuck to the same meds over and over. I am on it, then off it then back on the same thing. Thankfully, I have been doing without most of them this year. I think sometimes we struggle to know our diagnosis so hard that we pay attention to every symptom and any abnormality. That we worry about finding the magic pill too much. Sometimes it just isn’t there and we have to accept it and go on being mindful of what we can do to help us cope with those kinds of symptoms.

    • I would have put my foot down at 15lbs. I know that’s where my body naturally maxes out, so I would be able to identify that as a side effect. I don’t know how much I gained by being on Abilify, but I don’t dare step on a scale. I just know that my clothes are tight and I’ve gone up a belt notch. I look heavy in pictures and my face is filling out again. This is despite the fact that I was losing weight before Abilify.

      I wanted to wait until another post to discuss the exact side effects of my medications. I’m planning on making it a week long series. I’ll start here, because discussion is always a part of my prewriting process. Abilify robbed me of the ability to actually feel. And I’m talking about feel my body, too. I started recreationally eating again, because I couldn’t feel when I was full. I couldn’t feel my sugar anymore, and that was always the gauge of when I was hungry. It’s still screwed up my sugar, and I find that I’m running high sugar all of the time. I’m constantly hungry now that I’m off of it, and I’m consuming a high carb diet. I’m constantly thirsty, and I just wish this would stop.

      In addition, I’m still having cognitive effects. I am having problems accessing memories again. I can’t bank anything into my long term memory. It feels like there are emotions that are just inaccessible, and when I go to feel them, there’s just this blank, emptiness.

      I’m glad that you brought up accepting symptoms as part of who we are. I wanted to bring that up in another post, something I’ll probably entitle “Bipolar 1.5”, hopefully borrowed from Monday. I was describing it to DeeDee above, asking, “Where do we draw the line?” When I ask that, I’m posing a question as to where is the line between personality, symptom, what do we treat, and what do we just accept? And for a person who has relied so heavily on medication as being the only line of treatment, how do we go about treating symptoms when they are on that border between symptom and personality?

      I don’t want to lose myself in all of this, and that’s been half of the problem this year. I’ve destabilized right down to my personality over medication, side effect, and symptoms. I was doing the same thing and trying to treat the symptoms, and not the person. It was only when it got to a extremes that I noticed that I really wasn’t being me. And I met one extreme, symptom, with another, medication, and now I’m scattered somewhere in the middle.

      So, back to a delicate medium. I have to start accepting certain facts about myself, like we talked about.

      • When I started rapidly gaining weight from my medications (mostly the psychoidc ones). I when to the doctor I had then ( the one that had treated me in a previous psyc ward stay) and I said that something had to give because I was gaining so muc hweight. He with his foreign accent said “you are depressed, so you eat too much and then you get fat”. I told him that I was fully depressed when I went into the hospital and remember, I weighed about 120 lbs then. He just ignored it. He would try different meds taht were actually the same thing and it didn’t stop the weight gain. I went through, Zyprexia, Seroquel, Rispridol, and they all just kept me gaining. Then I went off of them and started taking Adipex and lost 50 lbs in less than three months. But after a while I needed more meds so my therapist had the nurse practitioner put me on geodon. My weight has been up and down the whole time. Right now I don’t know what is causing it except the binging. This year I have been going off some of my meds slowly so that I can figure out, how much of me I can get by with without being medicated.

        • I’ve always hated arguing with doctors. I used to argue with my doctor when I was in my teens who said the very same thing to me. I argued with her, “When I was on lower doses, I was still depressed and at my lowest weight ever.” How could I possibly be emotionally eating when I had started to emotionally starve? It was a bad habit that had resurfaced from my youth, after I had started to train myself in the art of emotionally starving.

          Admittedly, neither are particularly healthy. But, emotional eating, as you know, comes with more dire consequences for me.

          I’m pretty sure I’ve given up on the antipsychotics. I’ve been through two now, and neither of them are right for me. I know I haven’t been through them all, but this is a good indication that mild psychosis is just something I’m going to have to live with. I can’t live with the extra weight.

          I think I want to go back to bare bones medication and see where I am at. I’m bare bones medicating right now, and I’m managing fine, but I know that I’m really low functioning. But, I’m still higher functioning than I was when I was attempting to medicate myself to higher functioning.

          I don’t like this mindset, because it’s dangerous, but sometimes less is more. Now the question is, how much of my disorder can I manage on my own?

        • that is hard to figure out but I do think that it begans with how much we are willing to accept. I have small psychodic episodes at times but it isn’t where I am going to lose complete control. Just some extreem paranoia and Disasociative behavior now and then. But I get passed it and when It is there I am aware of it. But I have made a life where I can isolate myself for a few days when I am not myself. I know most people don’t have that opportunity. There was a time when I didn’t either. I think that is one thing that I atribute to my breakdown. I had no place to hide-too many responsibilities.

        • I do need to give myself more wiggle room like that. Somehow, and I don’t know how I managed, I have been able to communicate my needs to my family concerning my illness. Right now, I’m getting a lot of support and a lot of breathing room in terms of my responsibilities. I don’t want to get used to it, though, because I’m worried that I won’t always have the same opportunities that I do now.

          I’m finally able to stop taking on misplaced guilt for responsibility. I am just not able to function at the same level all of the time. That means there are times where I’ll be Wonder Woman, and then there will be times where I’m just going to have breakdowns. And I know that I’ll need the support. I’ve stopped pretending that I can handle everything, all of the time. And I’ve been able to delegate a lot better than I used to.

  3. I’ve had some crap side effects myself. I’m sorry you have too.

  4. This reminds me of my own story with medications, I was misdiagnosed with Major Depression and even took Abilify when I was a teenager, I didn’t knew anything about that kind of drug, it was the worse period of my life and I will never forgive the doctor that made me take that and didn’t let me stop taking it when I got worse.
    I didn’t gain any weight with Abilify because my former doctors coerced me to do a weight loss surgery after the weight I gained because of an antidepressant that I took for an year and made me feel worse, that doctor didn’t even see if I would loose the weight without the drugs, he just told me to stop taking the meds one day before surgery, today I can’t get overweight and I have nutritional problems.
    I don’t think I am able to trust a doctor again.
    I’m not taking anything in the moment, they always make me feel worse.

    • That’s a just plain awful story. I’m so sorry for all of your pain.

      It’s so common to be misdiagnosed with MDD. I feel like it’s just a catch-all label that doctors are eager to attach to anyone who complains of depressive symptoms when they walk into the office. With bipolar disorder, it’s so dangerous, because the treatment for MDD will make a person with BP even worse than they came in. Then, doctors have to wonder why people with BP are hesitant to get treatment!

      Your story is hellish. I couldn’t imagine having to go through a weight loss surgery because of doctor’s clear screw up. I don’t understand why doctors seem to think that extreme weight gain is a good exchange for “sanity”. I went through a really awful time as a teen with bouncing weight, and it took me a long time to gain any self-esteem out of it. Now, I’m super sensitive about my weight, and the weight related problems I have probably come from all of that weight bouncing in my teens. I’m in my late twenties, and I have prediabetes and developing heart disease. And all a PCP could say to me is that it is just a bad draw on the luck of genetics.

      I will continue to attempt to trust doctors, only because I had two really good ones. Two OB/Gyns I’ve had were amazing. The first one delivered my son, and the second did my second surgery. Sure, I had a surgery botched in between, but I think that was more on what my insurance company would cover, rather than what the doctor actually thought.

      • The weight gain many medications cause still worries me, after being bullied because of my weight and a painful surgery to loose weight that made me sick I don’t want to gain weight because of medication, that’s not something I can accept. Diabetes is a common family disease in my family and I was close to having it because of weight gain. Doctors should be more careful about that, not just ignore our fears.

        I think most people I know got a diagnosis of MDD first and maybe with luck the right one later, it’s strange considering Depression or depressive feelings come together with many mental illness and sometimes depressive episodes are a symptom.
        I know a little about how a person that has BP can feel worse with the wrong treatment, it’s something that made me consider if I have BP since antidepressants cause me to have really unusual and out of control symptoms, luckily my diagnosis is being reavaluated, the last psychiatrist I went to eliminated the possibility of BP because for her a manic episode is simply wanting to have a lot of sex. You probably know more about bipolar than me but I don’t think Bipolar Disorder is evaluated by asking someone in front of her parents if she has episodes of wanting sex desperately. I really need a right diagnosis, last antidepressant I took for fibromyalgia caused me to be too euphoric and agitated followed by the most agitated energetic depression I ever had and finally just deep depression, I don’t want to try new meds or treatments without the right diagnosis, just to be safe, especially since meds always have strange effects on me. Not saying I know what I have like BP but I definitely don’t have just Depression and Asperger, there is also some ignored tests that says PTSD that I hope doctors take in consideration this time, maybe this time they actually listen to what I am saying.

        • If you didn’t have PTSD before, I would bank that you do now. That ordeal that you went through seems downright horrific. I’m proud of you that you are strong enough to continue seeking treatment.

          I’ve read a lot about the effects of antidepressants, because there are a few individuals that I know where antidepressants actually make them depressed. Even the ones without a black box warning. It was just the same all around the board for them. In your case, I would wonder if you had an atypical kind of depression or something along those lines. I’ve read about people having “subthreshold hypomania”, as being classified as having atypical major depressive disorder.

          Unfortunately, there isn’t a clear treatment for that one. Some doctors just start pushing mood stabilizers to stabilize the mania that comes with antidepressants. Others keep fishing for another antidepressant until they hit upon one that doesn’t cause hypomania. I don’t know what you were on, but it could be possible that you were hitting on higher strength antidepressants, when you maybe need a higher dose of a lower strength.

          There are some antidepressants that are well known for causing manic states in people who don’t have BP. Wellbutrin is a known culprit. The effect is kind of unknown, but there is definitely a mix of panic and mania in there. I was experiencing both of them at both lower and higher doses.

          But seriously, there is some serious pride for you that goes out there. Keep up the good fight. I know that you’ll find the right treatment for you. Just keep trying.

  5. Wow, reading this only reinforces my fear of medication. Reading posts and comments like these reminds me why I am not on medication…lol

    • Aww, that wasn’t what I was attempting to do! But, I did know the risk of this as I was writing it. I knew it would be a turn off to a lot of people, but I was hoping that it would be a story of comfort for the others that have suffered with medication problems.

      I don’t want to say this, because I don’t want to seek to further the fear of pharmacological treatment, but more and more, I’m wondering why I even take it. Now, I know that I’m probably better off with it, because I remember back to the time when I was unmedicated. But, what is the cost of all of it? I’m back to the same medication cocktail I started on about three years ago (with the exception that I’m a lot more Lamictal), and I’m doing better than I have been all year. Was the answer as simple as just increasing the dose? Or does this come in fits?

      • Oh don’t mind me, I have always had a fear of medication. I am happy that medication is available and that it helps far more that it hurts.But for me I just can’t give over my control to a doctor that is not in my body or a pill that is.

        I am thankful that you are doing better and I hope it continues and improves! xx

        • Thanks. I was telling a friend today that I’m stable in my instability. I’m familiar with this kind of instability, and it feels pretty safe. I know that this particular state will pass. It’s not too bad, although it has it’s moments. As long as I’m mindful (which I can be, now that the Abilify is gone), and I take special care to not get stressed out, panicked, or overwhelmed, then I am mostly okay.

  6. Pingback: Abilify, Not I : Adventures in Antipsychotics | Sunny With a Chance Of Armageddon

  7. Oh wow… your post and those comments are so informative. I was pretty cautious about taking my mood stabilizers at the start. I did not like having my emotions suppressed too much. I felt like a robot most days, like a hamster running around a wheel from day to day. I was also sleepy and light-headed most of the time. How was I supposed to work when I wanted to take a nap at my desk most days? And the meds were out of my budget and I didn’t want to become a burden on my family and have them support my medication so I stopped them.

    But just this past December, I fell into depressive state once again. I’ve gone AWOL until I’ve finally resigned since I couldn’t face all the questions that were waiting for me back at work. My sister persuaded me to get back on my meds. I think that I have a good psychiatrist right now. He also put me on Lamictal. He gave me an option to also try out Trileptal to manage the manic side of my condition. Have you had any experience with that? I’m wondering what I should do. I’m quite anxious about experiencing any more side effects because so far, Lamictal has been good for me.

  8. This is horrific. It scares me so much, it truly does. That staring at the ceiling and your mother observing you – you know, that would have been so painful, for you both.

    After attempting suicide in 2011, they tried me on Effexor then more & more until maximum dose daily. That you were prescribed OVER maximum ASTONISHES me.

    I took myself off Effexor this year. It impacted my work badly and I was pulled up in front of HR and threatened with being without a job. But, I did it. They still are keeping an eye on me, they pounce on every mistake I do and I loathe them for this, but yeah, I did it.

    There is a lot of valuable information in here, I wish – just wish the doctors would read. I’m fully with you on the distrust of doctors.

Your thoughts?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s