Ophelia: Struggling after Risperidone

[Ophelia]

Hello Everyone,

 

I am relieved to find this site, because I have been dealing with problems from my medications alone for a long time, and it's a relief to find a support system, and a place where I may be finally be able to be helpful. 

 

For context, I grew up in an unstable home. My parents were upper middle class and had no serious problems (like drug abuse), and were caring in many ways - but not in others. My mother withheld food for every reason in the book (misbehavior, being too busy, not believing I was hungry, trying to teach me a lesson about different things, like patience, and making sure I stayed super thin, and making sure I enjoyed the food she cooked more) and I was hungry all the time, though never became too unhealthy because I never exceeded 24 hours without food. But it made me extremely hunger phobic (which I still am today.) I developed insomnia and generalized anxiety at the same time. And no one in my family took it seriously - they were all disappointed in me. However, when I developed depression, my parents constantly took me to doctor's and tried numerous medications - Hydroxyzine, Prozac, Lexapro, Zoloft, Clonidine, Welbutrin, and Abilify - all to no avail. During my depression, both parents became extremely emotionally distant from me, which made things worse.

 

Finally, my doctor prescribed Mirtazapine and convinced my parents to feed me more regularly, and my depression and insomnia went away. However, I was also prescribed Risperidone. I was told that its mood-stabilizing effects would be beneficial in helping regulate my emotions and would prevent me from overindulging in my internal fantasy world (that became a crutch for me during my depression. I was not psychotic or bipolar - my official diagnosis was major depressive disorder and I never had mania or hallucinations. Risperidone was at a low dose, .5 mg, although I was only 14. She also wanted Risperidone to be a short-term drug. However, we had to abruptly switch to a new doctor (my parents had split up, and we had to find a doctor closer to their new houses). He seemed to think Risperidone would be fine as a long-term drug; I suppose he thought it was needed to keep my depression at bay alongside Mirtazapine.

 

Here's when the trouble began. Mirtazapine was fine (I'm still on it.) However, with Risperidone, I had to fast regularly to test for insulin resistance. This aggravated my hunger phobia, but my parents didn't take it seriously. It also exacerbated my anxiety tenfold. I became so afraid of bugs that by the the first year I was on it, I was too afraid to leave the house during the summer. Sleeping was hard because I was terrified a bug would crawl into my bed. Some of my childhood fears came back and became huge an irrational - I was terrified of vomiting and lound sounds, to name a few. My family didn't take this seriously - they didn't believe it had gotten worse; they told me I was always this anxious. My doctor mostly believed them and gave me Xanax rather than examining my medications. 

 

After six months on the drug and for the rest of my time on Risperidone, I began waking up twice during the night by extreme hunger, unlike anything I ever felt (around midnight and again between three and four in the morning) which was disastrous for my mental health because of my phobia. (I think the only way I survived was because the hunger was so extreme that it felt fake, but it hurt like hell.) I couldn't go more than two hours without getting extremely hungry, and became afraid of taking standardized tests in high school (because food wasn't allowed) and couldn't go to social outings because I was afraid my friends wouldn't stop for food. Sometimes, no matter what I did, I couldn't feel full. I stopped doing the fasting blood draws because of my phobia, despite the potential consequences. I started cutting to deal with the constant threat of hunger. My family still didn't take my deteriorating health seriously and even threatened not to feed me to get to do what they wanted, and mocked me for being scared all the time. The only thing that stopped them from not feeding me was my doctor. He told them to feed me, but he didn't take me off the drug despite the hunger-induced insomnia and anxiety. 

 

I had prolactin troubles. It gave me an intense sex drive. However, it stopped my puberty almost entirely. I had menstrual periods once every three months, but when I did have them, they could last for two weeks and were very heavy, though I had no cramps. I also began to look different - I look younger in my senior yearbook photo than I did in my eighth grade middle school photo. People who saw me around high school who didn't know me well enough asked if I was a freshmen all junior and senior year. My parents blamed me for some reason - they just said I should wear more makeup and said I got bad "genes" from the other parent.

 

After three years on the drug, I started having serious problems with my gut. For the first three years, I had bad constipation on and off, getting progressively worse as the years went by. After the third year, I had an episode where I was constipated for ten days and had to use powerful laxatives four times to finally get some relief. After that, I had to use those laxatives regularly. I also developed an immense, cramping pain in my gut. It would get so bad that sometimes, during class I couldn't do my work at all. I had to sit there, motionless, for the full hour because the pain was so bad I couldn't move. I had trouble standing for this same reason. This was my senior year, and the intensity of and the frequency of which the pain occurred and the need to use laxatives increased.

 

At the same time, I started having psychotic episodes. I would switch between "positive" episodes, where I had delusions that the teachers and students in one of my classes were forming a conspiracy to humiliate me, that everyone I knew was trying to collect information about my weaknesses (hence my refusal to tell anyone about the pain in my gut), that other teachers were reading my thoughts, and so on. I became terrified of small noises and believed that whispering people were always talking about me. I had a perceptual difficulty where the world looked too shiny and glass-like. In between were "negative" episodes, where I couldn't make facial expressions, everything looked gray, and I moved very slowly and either felt immensely sad or nothing at all. teachers and friends tried to help me but I was scared of them and wouldn't let them. My family be angry with me. I was living with my dad, and would accuse me of abusing my Xanax drugs when I had negative episodes, and would yell and once hit me when I got scared of him during positive ones. I didn't live with my mom at all because her abuse was worse.

 

After graduation, the laxatives just weren't effective anymore, but I kept using them, more and more, to try and get their effect. This caused bizarre symptoms (I think.) I slept for 14 hours a day, and had trouble moving after I took one. My heart would go extremely fast for hours after taking them. At the time, I started to worry they were killing me. I knew that both Risperidone and Mirtazapine caused constipation. The hunger was bad as it had ever been, and I was having delusions based around that, and I knew that Risperidone and Mirtazapine caused increased appetite. I finally decided that I needed Mirtazapine more because it had relieved the depression symptoms first, and Risperidone was only ever supposed to be for emotional regulation help anyway. Deciding I could do without it, I quit it cold turkey. I wouldn't have done this if I was thinking straight, but I was psychotic and no one was offering any help.

 

Within hours, my constipation was relieved and NEVER came back. My appetite dwindled within a few days, as did my anxiety about bugs. For the first time in years, I walked out into the summer heat without fear of bees, and slept without hunger. I had a wonderful feeling in my body that I can't even describe. My psychotic symptoms being to ebb immediately, and were gone entirely after a month. 

 

However, other troubles popped up. First off, I've been mildly depressed and isolated since what happened. I feel awful about how I treated my friends and teachers when I was psychotic and thought I had to protect myself from them (which usually meant rudeness or shutting them out). I reconnected with some of my friends, and they really understood. However, not with others. Also, my family is the most distant they've ever been. They don't understand what I've been through, what I'm dealing with now, or why I treated them the way I did. They think I over-exaggerate and seem to regard me as unstable and don't have a sense of the recovery I've made, they only see the shortcomings I still face. I feel like a burden to everyone - I always need something, like money for doctor's visits or emotional support. I haven't yet been able to offer much in return, and it's profoundly upsetting. There's always something going on with me and I just wish I could help others for once. 

 

Two moderate shortcomings are communication and driving. Talking has become very difficult - I'm always forgetting what I should say (like "have a nice day') and am frequently lost for words - I either stare off into space or say "um" multiple times when asked a question. My words come out jumbled. Only a couple of friends have been patient enough to learn how to communicate with me. My family says I'm less intelligent than most people my age, and my peers and professors tend to think I'm weird or rude. I'm getting better though and my writing has remained fine and is a good communication tool for me. I also still can't drive. On Risperidone, I was too afraid to drive. Now, my nutrition is bad (I'll talk about that more below) and so it makes it hard to focus on different things at once (like car speed and lights) but I'm working on it. It's slow going though because I need to get away from my family.

 

One of those is my menstrual periods. They are regular now, but the cramps they give me are intense. So bad that they make me sick to my stomach. Sometimes so bad that I almost faint and/or see stars. The cramping extends down my legs. I experience some of the psychotic symptoms I had on risperidone, along with confusion and sometimes even hypomania (like rapid talking and over-spending.) I now take Xanax exclusively for this because it's the only way to drown out the pain.

 

Worse, I have terrible problems with my gut. I had acid reflux for a year after quitting Risperidone, though it's now mostly gone. Risperidone may have increased my appetite, but when I quit it, I lost my appetite almost completely. I became at one point nearly ten pounds underweight. I usually ate one small meal a day with a snack. I became so underweight that at one point I had problems breathing and climbing staircases. I had strange pains in my legs and made very poor decisions. I got sick all the time. I was cold all the time too - I had the space heater running in the summer. My felt pain in my bones all over my body and sitting on hard floors was excruciating. My family noticed none of this. At one point, I had to go to the urgent care once for dehydration. But of course, the doctor and my family wrote it off as anxiety, though the doctor mentioned I needed to put on some weight. I can't eat breakfast anymore I have symptoms of severe IBS daily, and used to vomit if I didn't get enough sleep (though this has since lessened to heartburn.) I still have malnutrition problems on an off. I alternate between a week of eating normally, eating less, and then eating almost nothing at all. Doctors and family say it's anxiety, but my anxiety has been virtually gone since quitting Risperidone. 

 

On that note, I HAVE made improvements. My anxiety is the lowest it's ever been my whole life (I can pick up spiders in my bare hand!). My hunger phobia, for better or worse, is more manageable now that my appetite is unreliable. I am in college. Socializing is hard and my roommate also became verbally abusive, making fun and belittling my health problems more actively than my family. However, I've made some light acquaintances and am helping a professor with research. I'm in the honors program at my school and I have a job. Despite my pain and eating problems, I go to class and have learned to be tough about it. I'm thinking of writing a book about my experiences with Risperidone. I'm keeping hope and positivty.

 

But to be honest, it's hard. I don't have anyone to talk to about what I've been through. The nutrition problems are bad, and no one takes them seriously. I have a better doctor now, prescribing Mirtazapine and Trazodone (for sleep), and does recognize my weight issues are a problem, but I have trouble paying for her on a regular basis, and she can't do much for me when it comes to helping the nutrition/weight problem - I need a nutritionist, which I also can't afford. And so my poor health continues to get in the way of a lot of things, but I don't many solutions and sometimes the only thing I can do is hide them and manage them the best I can without guidance. 

 

And so, I am so grateful to anyone who has read this long and personal post, and I greatly appreciate any support and want to offer all I can in return.

 

[Altostrata]

Welcome, Ophelia.

 

First off -- your parents are nuts. Not feeding a child! That's reprehensible. No wonder you were anxious, afraid of others, and hungry.

 

Second, you may have had psychotic symptoms, but you were never psychotic. You were having iatrogenic (drug-caused) symptoms. This is important for you to understand so you can stop thinking of yourself as a psychiatric case.

 

Of course your appetite has been affected by your family experience and adverse drug experiences. Lack of appetite and poor sleep are very common withdrawal symptoms after someone goes off a drug abruptly. 

 

Are you seeing a counselor? Do you have a campus clinic? It's important you talk to someone who's going to support your sense of yourself. In effect, you have been forced to be anorexic and on top of that, Risperdal probably affected your sugar metabolism. You also need to get out of the mindset of drug treatment.

 

In time, you will recover from this, but you need to focus on taking care of yourself. For example, eating good food three times a day whether you're hungry or not and, of course, drinking enough water throughout the day. It sounds like many of your symptoms are due to malnutrition.

 

Does your school have a cafeteria? Can you choose very mild food, such as chicken, rice, and cooked vegetables? Chicken soup? Mashed potatoes? Your gut needs gentle, loving care for a while.

 

What was your sleep pattern prior to adding trazodone? When do you take trazodone and mirtazapine, at what dosages?

 

Please put ALL your drugs in the Drug Interactions Checker https://www.drugs.com/drug_interactions.html and copy and paste the results in this topic.

[jamesbond747]

oh god ophelia!!

I cant believe such worst parents even exist!!

I really hope you get a good person who can get you out of all your troubles!!

Man i cant believe in god after reading what you had to endure!! I just keep believing you get a chance at your life's end to take the right revenge against your wrong doers.

 

[Petunia]

Hi Ophelia,

Your post almost brought me to tears, I'm so sorry for what your family has done to you, no child deserves to endure such harmful abuse at the hands of people who are supposed to be the main source of love and care. Thank you for sharing your story. Your strength and determination shines through, in spite of everything you have been through, and still are going through.

 

I can't add anything to what Altostrata has written, its great advice. But wanted to send you a virtual hug and say I'm glad you found us, there is a lot of good information and friendly support here.

 

Another site you also might like is Beyond Meds

 

Petunia.