My Medication Musings: Abilify

It’s been a while since I last did a post on my medications. Today I’m writing about the medication I’ve been on the longest: aripiprazole (Abilify). I’ve been taking this second-generation antipsychotic for over ten years.

When I first got prescribed Abilify in 2010, I had been on no psychotropic medications except for PRN oxazepam for over two years. I was having a lot of meltdowns though and the staff at the psych hospital couldn’t adequately care for me. I was sent to the locked ward for a time-out shortly before starting on Abilify.

When my psychiatrist proposed this medication, he made a pun about the drug’s name by saying it makes things a little easier. I didn’t like that, but agreed to take a low dose of Abilify anyway. I started at 5mg a day.

Within half a year, I had had my dose upped to 15mg a day. I did pretty well on that moderate maintenance dose for several years, until I moved to another hospital. There, the staff/client ratio was lower and besides, staff weren’t as willing to accommodate for my needs. I quickly had to up my dose again to eventually 30mg a day.

I wasn’t so sure I wanted to go beyond 15mg, as most clinical guidelines recommend a higher dose for acute mania or psychosis only. My new psychiatrist disagreed and seemed to have no interest in lowering my dose once I had upped it. For this reason, I’m still on 30mg a day.

When I first came here, I expressed a wish to lower my dosage once I’d settled into the care facility. The intellectual disability physician for my facility as well as my psychiatric nurse practitioner recommended I wait at least six months. I’ve now been in the care facility for a year, but haven’t felt comfortable asking to be tapered yet.

Now I must say I don’t experience any of the more major side effects, such as akathisia (a form of physical restlessness). I however do feel slightly sedated.

I also feel that the medication’s effect has worn off over the years. I recently learned that your neurotransmitter receptors overgrow when you’ve been on psychotropic drugs for a long while. At least, that seems to be the case for the dopamine D2 receptor, the one Abilify mainly acts on. Recommended action is lowering the dosage or trying another medication. I will definitely raise this issue with my nurse practitioner.

As a side note, like I said, I had my dosage upped once I moved to a psych ward with a lower staff/client ratio and less willingness to accommodate my needs. This is not an appropriate reason for medication increases, but I didn’t know what else to do.

My Medication Musings: Phenergan

It’s been a while since I last did a post talking about one of my medications. Today, I want to talk about one I’ve not used in a while: promethazine or Phenergan.

Phenergan was the first PRN medication I got prescribed while in the mental hospital. I remember clearly the state of mind I was in. I had been irritable for most of the afternoon and finally burned my hand using boiling water. This act of self-harm got the nursing staff to fetch the physician. I apparently had a smile on my face when I disclosed my having self-harmed, so he said there was nothing to laugh about. Obviously not, but I struggled to express my emotions. He offered me a PRN medication. I’d heard of Phenergan before and what I’d heard about it from autistic people, wasn’t good. However, I still agreed to take it.

Phenergan, for those not familiar with it, is a low-potency classic neuroleptic. It is currently mostly used as an antihistamine to treat allergies and such.

That evening, I was totally wiped out from the effects of the medication. I just lay on the couch or in bed feeling stoned out of my mind. That was what I needed at that point.

After that, unfortunately, I was prescribed oxazepam as my default PRN medication. Some years later though, I got prescribed Phenergan again after I’d pretty much exhausted all benzodiazepine options.

Unfortunately, by then, Phenergan did nothing. I only took it to make myself and others feel like I was doing something about my distress. At one point, my new psychiatrist once I was living with my husband, even suggested I swap it for a vitamin C pill so that I would still have the placebo effect but not the side effects. Not that I was having any side effects.

A few months later, however, I took an overdose of Phenergan that landed me in the general hospital. That was when I decided not to request a refill of the Phenergan. I by that time had lorazepam, which worked some but of course had the addictiveness as a negative. However, I’m not supposed to take PRN medications regularly anyway.

X-Patient: Psychiatric Rehabilitation and the Recovery Movement #AtoZChallenge

Okay, welcome to my letter X post in the #AtoZChallenge. I’m not really motivated for this one, but I don’t want to give up on the challenge either. My topic today doesn’t really fit in with the rest, but well. Today I’m writing about what it is like to be an ex-psychiatric patient. In the anti-psychiatry movement, some people choose to write this without the E, so it counts.

When I first heard of psychiatric rehabilitation around a year into my psychiatric hospital stay, I hated the entire concept. It was all based on training people to be more independent whether they wanted to or could do this at all. I knew already that I needed long-term care, so I was like: “Didn’t I just complete 18 months in a training home only to have it fail?”

Then, a few years later, I heard of the recovery movement. Unlike psychiatric rehabilitation, this is entirely patient-led. I signed up to participate in a recovery course. What surprised me immediately was the fact that my mental hospital chose to only allow those staying there as inpatients on the course. They later started a course for outpatients too. I loved this course. Going into long-term care wasn’t frowned upon but seen as a means of getting my life back on track. Unfortunately, that’s not how most professionals, at least on my last unit, saw it.

A few weeks ago, I watched a short video on a Center for Consultation and Expertise case in which the recovery viewpoint was misapplied to an autistic man. Indeed, I’ve never felt that concepts like “rehabilitation” apply to autistics. I mean, the idea that we all want a meaningful life, is good. However, considering a meaningful life as the same as independent living, is in my opinion rather misguided.

My Medication Musings: Risperdal

I started this should-have-been-series a long time ago, but never got beyond the first post. Today I’m not very inspired to write, but I want to write something anyway, so I am deciding to continue with my medication musings. The medication I’m covering today, is the first daily medication I was evver prescribed.

Risperdal, which is now sold under its generic name risperidone, is an atypical antipsychotic. It was approved by the U.S. FDA for use against irritability in autistic children in 2006. I was not a child when I was prescribed Risperdal in 2007, but I was definitely irritable and autistic.

I remember very clearly when I saw a psychiatrist I’d never met before and who may or may not have read up on my psychiatric history on July 25, 2007. She had a strong Flanders accent. My CPN had referred me to her after my staff at the independence training home called her because I had been very irritable of late. Looking back, it’s no wonder, since I was due to move out of the home and into independent living the next week. But my staff were desperate and so was I.

My CPN had suggested a sleeping medicationor tranquilizer, as I was also sleeping very poorly. Not that the psychiatrist agreed, since when I reported how many hours of sleep I got at a later phone consultation, she said that wasn’t worrysome. The psychiatrist listend to my symptoms and suggested Risperdal.

I agreed without much further questioning. That evening, I wrote a blog post saying antipsychotics in autistics are a matter of really well-informed consent. The post was a response to the general consensus at the time among vocal autistics that antipsychotics should never be considered.

Looking back, while I don’t feel that antipsychotics are completely off limits for autistics – I still take one -, I do agree with another notion from said vocal autistics: psychiatric medication is no substitute for proper support. And yet, at the time, there was no convincing my staff that I shouldn’t move into independent living, so I felt I had no other option if I wanted to have somewhat of a life worth living.

And yet, I was scared. When, after two days, I started experiencing palpitations, I was extremely anxious. It happened on a Friday night when my staff were already gone. Don’t ask me how I got through that night. The next morning, I rang the out-of-hours GP, who recommended I stop taking the medication for a few days and consult my psychiatrist on Monday. Said psychiatrist didn’t believe that this could be a Risperdal side effect or I’d have experienced the palpitations right from the start. So back I was on Risperdal.

I was on a low dose of 0.5mg twice a day. My psychiatrist was in the training home’s city, so when I moved the next week, I had no psychiatrist nearby. My GP ended up prescribing my medication. When I complained to both the training home city psychiatrist and my new GP about continuing palpitations, both dismissed me. The psychiatrist even suggested I up my dose. I refused.

Because of the abrupt change in my living situation soon after starting Risperdal, I had no idea whether it was working. I was still experiencing a lot of meltdowns.

After two months, I took myself off of the medication. I more or less informed my GP, because she was really against me going off of it. I probably lowered my dose way too quickly, going from 1mg a day to 0.5mg for a week and then stopping altogether.

We will never be sure whether Risperdal worked for me, as I never went back on it. However, three weeks after stopping the medication, I started to spiral down into crisis and had to be hospitalized four days later. The crisis service psychiatrist didn’t say a thing about me having discontinued Risperdal.

An interesting thing I need to note, is the fact that Risperdal is notorious for increased appetite and weight gain. However, I experienced the opposite if anything. This could’ve been due to stress though.

My Medication Musings: Celexa

Like I said last week when participating in Working On Us, I wanted to write a series of posts on the medications I’ve been on. I won’t promise this will be anything like a regular feature. However, today I saw that Medication Monday over at The Dark Tales Project is about a medication I currently take: Celexa. I already wrote several posts on this medication in the past, so may be repeating myself. Let me share though.

I was first prescribed Celexa in September of 2010. At the time, I had just finished a book whose title translates to Prozac Monologues, which was about the positives and mostly negatives of antidepressants. I didn’t really care. One comment I remember, by one of the pro-Prozac people, was that she’d become nicer on antidepressants. That comment was on my mind when my psychiatrist suggested Celexa and boy did I hope it’d do this for me. I was a definite bitch! The saying that depression makes you feel as though you’re not okay and neither is anyone else, definitely related to me.

The thing is though, I wasn’t sure I was depressed. No proper assessment of my mental state preceded my being prescribed Celexa. Yes, I was irritable and no amount of tranquilizers or antipsychotics could help that. But is that depression? Would Celexa help?

As it turned out, it helped a little with that. I felt a little calmer, a little nicer on the medication. I never asked my husband to comment on the level of my irritability and can’t remember for sure whether he ever made any positive comment on it. If at all, that must’ve been in 2018, when my dosage got increased.

I actually wasn’t diagnosed with depression till 2017. At the time, my irritability was one symptom that prompted the psychologist to diagnose me with major depression. I’m pretty sure I have persistent depressive disorder (formerly known as dysthymia) too though, but I don’t think I’m currently even diagnosed with any mood disorder at all.

It took another year before my Celexa dosage finally got increased to first 30mg and then my current dosage of 40mg.

I was very irritable at the time of seeking my psychiatrist’s help with my depression. I was also most definitely depressed, in that I didn’t have much energy or motivation for anything. As is known for Celexa and other SSRIs, the medication caused my energy to go up first before actually helping with my mood. My mood however did eventually lift. I am pretty sure that, had it not been for Celexa, I would’ve sank deep into depression during the long process of applying for long-term care.

But the story isn’t all positive. Aside from the side effects, Celexa (and Abilify) took only the edge off of my irritability. I’m in fact noticing it getting worse again. I’m not exactly sad, but I’m most definitely pretty negativistic lately. I’m not sure why. I mean, maybe it’s something to do with the lack of an over-the-moon sense of relief at going into long-term care. Or maybe it’s the other way around and my negativistic state prevented that. I’m not sure.

Working On Us Prompt: Psychiatric Medication

I’ve been thinking of doing some posts on the medications I’ve been prescribed so far, but didn’t get down to it till now. Today, Beckie’s topic for Working On Us is psychiatric medication. Beckie asks a few interesting questions I didn’t think of.

First, she asks whether, when you were first diagnosed with a mental illness/disorder, it took you a while to get used to the medication prescribed. Well, my first diagnosis from a psychiatrist was autism, for which there are no specific medications. It took four months after that diagnosis before I first got put on a daily psychiatric medication. That was Risperdal (risperidone). I didn’t like it at all, even though it took only a few days to kick in.

I remained on Risperdal for 2 1/2 months, and then took myself off. I felt that the medication was merely used to keep me just contained enough that I didn’t qualify for more care. Well, it is my firm belief that medication is not a substitute for proper care.

Going off Risperdal was a mixed bag. I felt okay the first few weeks, but three weeks after having stopped taking the medication altogether, I spiraled into crisis.

After taking myself off of the Risperdal, I was without daily medication for nearly 2 1/2 years. I was in a psych hospital, so I can tell you right away that the crisis service nurse was wrong to say hospitalization would mean being put straight back on meds. Apparently my psychiatrist agreed medication is no substitute for proper care. That was until, despite mostly adequate care, my irritability got so bad I just needed something. I was put on Abilify (aripiprazole) and remain on that ever since.

Beckie also asks about withdrawal. I have been on the same antipsychotic and antidepressant ever since 2010 and never lowered my dosage yet. However, I did for a while take Ativan (lorazepam) at a relatively high daily dosage. Then when I wanted to quit, my psychiatrist said he’d prescribe it as a PRN med. Well, I didn’t need it for the first few days, so I didn’t take it. That was until I started experiencing tremors a few days into withdrawal. I am lucky I got only those and didn’t get seizures or the like. Thankfully, I got put back on lorazepam and tapered safely.

Beckie’s last question is whether you work closely with your doctor in managing your meds. Well, I just had a meeting with the intellectual disability physician for my facility last Monday. She is making sure I get my medications and will also order yearly bloodwork to check for metabolic issues etc. I haven’t seen a psychiatrist with my new mental health team yet, but will soon enough. I want to eventually try to lower my Abilify dose. The intellectual disability physician advised me to wait at least six months to get used to living here though.

Working On Us Prompt: ADHD

It is Wednesday and that means Beckie has launched another topic in the Working On Us Series. I badly wanted to participate last week, when the topic was (complex) PTSD. However, I felt too low on energy then. This week, the topic is ADHD.

I was never diagnosed with ADHD, so in this sense I have little to add here. I, however, do experience many symptoms that could be signs of particularly inattentive-type ADHD. They overlap a lot with autistic symptoms though, which I do have a diagnosis of. At this point, I don’t think it’s necessary for me to get an official ADHD assessment. Most groups for adult ADHD/ADD welcome self-diagnosed individuals and those who are questioning, like me.

Symptoms I relate to include restlessness, both physically and mentally. I’m not necessarily hyperactive in that I blurt out random things, but I do fidget like all the time and my mind is usually racing. That is, it is either racing or completely shut off, like when I’m low on energy.

The same really goes for impulsiveness: I’m not impulsive in the typical way, but I am in less typical ways. For example, every need feels urgent to me. This applies to basic human needs like eating – when I feel hungry, it feels as though I’m literally starving -, but also to other wants and needs. This could be related to autistic sensory processing issues, but I believe it’s more than this, especially since it doesn’t just apply to sensory or bodily needs.

As for inattentiveness, I can’t usually pay attention to something unless it really interests me, in which case I hyperfocus and become totally absorbed to the exclusion of other activities. I know this is an ADHD trait, but it is also common in autistics and I’ve always wondered whether everyone doesn’t have this issue to an extent.

Lastly, my executive functions seem to suck. My memory for random words or digits is about average and used to be above-average, but for everyday life experiences (particularly others’ experiences) and daily tasks, it’s pretty bad. I was told when I did a behavioral memory test (where you have to retell a short newspaper story) as part of my autism assessment, that my memory is detail-oriented.

With respect to planning and organizing tasks, I suck at those and always have. I used to do pretty well when faced with a deadline, but even then I struggled to organize tasks. I recently read that ADHD children often learn to do tasks on high adrenaline. The reason is often that neurotypical adults assume that, if a child is capable of something relatively difficult once, they must be able to do it all the time and must be able to do all assumed-to-be-easier tasks in that category. For this reason, neurotypical adults often force ADHD children into doing tasks they cannot yet do, assuming they can, and as such cause the child high anxiety. This causes an adrenaline rush, which temporarily increases the child’s ability to perform.

When I read this conversation on Facebook (it was originally posted to Tumblr but I don’t know where), so many bells rang in my head. Like many people referred to in this conversation, I can sometimes do seemingly more complex tasks while not being able to do simpler tasks in that same category. I am also very inconsistent in my abilities, usually being able to perform a task under pressure better, but with less pleasure. For clarity’s sake, this conversation was meant to explain the harmful effects of forcing children to do tasks they feel they are not capable of.

Since I do not have an ADHD diagnosis, I’ve not had any treatment specific to it. I’m also not on ADHD medication. I, however, find that some coping strategies that work for ADHD individuals, do work for me.

Working On Us Prompt: Sleep Disorders

The past few days have been pretty busy, so even though I did want to blog, I hardly found the time. Now it’s already latish evening too.

Today I’m once again joining in with Working On Us, for which the prompt this week is sleep, insomnia and other sleep disorders.

As a child and teen, I suffered from insomnia a lot. I would often be awake for the whole night or hardly sleep at all. On week-ends, I sometimes made up for it by sleeping in, but I was definitely chronically sleep deprived. Though my parents sometimes suggested, and I don’t know whether they were joking, that I take valerian or melatonin, I wanted nothing of it. In fact, when I was going in for eye surgery at age seven or eight, I refused the tranquilizer they offered us before the operation. I also constantly fought the anesthesia.

When I was 20, I sought treatment for my insomnia for the first time. My GP prescribed temazepam, the most commonly-used sleep medication here in the Netherlands at least at the time. I was very scared when first using it, being that I’d not taken any medication in years, not even paracetamol.

I think that what lay underneath both my insomnia and my refusal to take medication for it, was an intense fear of losing control. I was, after all, pretty compulsive particularly as an older child and teen.

My sleep issues escalated in 2007, when I lived on my own in Nijmegen. Though I didn’t sleep less than I had as a younger person, I did suffer from the effects of sleep deprivation more. When I was admitted to the psychiatric hospital, the first medication I was prescribed was again temazepam. Then followed another few benzos and even levomepromazine (Nozinan), which is normally only used for palliative sedation.

I had to take “twilight anesthesia”, which means high doses of benzos, several more times prior to procedures and chose them over the pain that would otherwise ensue. However, I still had terrible fear when I “awoke”.

Other than insomnia, I’ve had an assortment of other sleep issues. My husband said at one point that I have hypersomnia, because I slept so much. This was probably down to a combination of medication, vitamin and iron deficiencies and lack of structure.

I am a sleep talker and I snore too. The snoring got slightly better as I lost weight last year. I’m not sure whether it’s worsened again since I’ve gained weight back up again. The sleep talking comes and goes with stress.

Lastly, I suffer from vivid dreams and nightmares. They’ve gotten a little better now that the long-term care situation is more or less settled, but during times of stress, I very often awaken in a state of shock because of vivid dreams. That is, I’m not 100% sure they’re REM sleep dreams or night terrors (which happen during stage 4 sleep). I’ve never had a sleep study done either.

Working On Us Prompt: Self-Care and Personal Hygiene

This week’s prompt on Working On Us is about self-care. I initially thought of self-care as those things we do to pamper ourselves, but then when I read the questions, I realized Beckie means basic self-care. You know, personal hygiene, such as showering or brushing your teeth.

I definitely have always had trouble with this. Part of it may be due to my lack of awareness of my appearance, which may be due to both blindness and autism. However, the fact that I don’t always shower or brush my teeth regularly, certainly isn’t.

I have always had trouble with proper personal care. When I was about fourteen, my high school tutor got complaints from my classmates that I smelled a lot of body odor. He told me I really had to develop a personal hygiene routine, but didn’t explain how to go about it. He was my PE teacher and said that he personally showerd twice a day. So I initially thought I had to do that as well, so the next day, I jumped in the bath at 6AM. My parents were not amused. With my parents, I finally agreed on a routine of baths or showers three days a week, on Sunday, Tuesday and Thursday evenings. That way, if I went to school, it’d never be more than 48 hours since I’d had a shower or bath.

My parents still didn’t explain how to wash myself. Honestly, now that I’m 33, I still get told by my husband at times that I don’t do it properly.

The problem of course wasn’t just that my parents didn’t teach me. After all, presumably my sister knows all about hygiene. It was also that I had an aversion against personal hygiene activities. Here is where my mental health is involved. Like, I have executive functioning issues on the best of days, making a “simple” shower very difficult. When I’m depressed, I cannot cope with the stress of having to shower.

My lack of self-care wasn’t even picked on when I was first assessed by a psychiatrist. Maybe he did notice I smelled, or maybe that particular day my body odor wasn’t too bad or I’d had a shower. If he did notice, he didn’t tell me so or write it in the report. Neither did any of the next so many psychiatrists and psychologists I had. I only found out that my psychologist at the resocialization unit in Nijmegen had noticed because it was written in my long-term care application at the time, that I didn’t get to see until we applied again last year.

As for brushing my teeth, I hated toothpaste. I still do, but at age 18, finally forced myself to use it. I never brushed my teeth properly until I got an electric toothbrush for my birthday this year. Now I’m still not sure I do it right, but I at least brush for the required two minutes. Interestingly, the elctric toothbrush is less horrible sensorially than the handheld one.

I find it interesting that, though lack of personal hygiene is part of an assessment of mental functioning, so few mental health practitioners take the time to discuss it with their patients. Like, when I was in the mental hospital, no-one offered to teach me personal hygiene. Not even when the dentist recommended I get help brushing my teeth. They said it was my responsibility. I really hope that, when I’m in a care facility for people with developmental disabilities, that will change.

Working On Us Prompt: Pets and Emotional Support Animals for Mental Health

This week’s Working On Us prompt is all about pets and emotional support animals. There are several questions to answer as a prompt or you can write a narrative. I am going to go with the latter, but also incorporate the questions into my post.

I have never had a formal emotional support animal. I do hope to get a guide dog for the blind somedday that will hopefully be in some ways capable of supporting me emotionally too. I know of several people with guide dogs who feel their dogs serve them a purpose related to their mental health too.

For now, I have a cat. His name is Barry and he’s a six-year-old European shorthair (the “standard” breed for Dutch cats). We adopted him from the animal shelter my mother-in-law and sister-in-law work for in 2014. At the time, we had another cat too named Harry, but Harry was extremely hyperactive. We hoped that a companion for him would help him let out his hyperness in a healthy way. Barry however couldn’t handle it, so eventually we rehomed Harry to my sister-in-law.

I never quite bonded with Harry. I was always worried he’d shove my Braille display or other expensive equipment off my desk if he got the chance. At the time, I still resided in the mental hospital so only got home on week-ends. I really didn’t like Harry to be honest.

With Barry, I initially didn’t bond well either. Barry was very shy and reserved to begin with. I remember clearly when Barry first came to me for a cuddle.

Now that I live with my husband, I am Barry’s main feeder, so he’s taken more to me. As a result, he definitely supports me emotionally. He sometimes lies next to me in bed when I’m sleeping off a depressive state. His care also provides me with some much-needed structure. Barry isn’t an emotional support animal officially, but having him around definitely helps me sometimes.

In my opinion, any animal that can be kept as a pet can be an emotional support animal. So can farm animals. In 2005, I went cow-cuddling with the blindness rehabilitation center. I didn’t like it at the time, because I didn’t see the purpose. Now I would love to go cow-cuddling again.

Similarly, horses are definitely useful as therapy or support animals. As regular readers of my blog know, I go horseback riding at an adaptive riding school once a week. Though it isn’t officially therapeutic, it definitely helps my mood and overall mental health.

I also have experience caring for horses that I didn’t ride. In 2012, I went to a horse stable as part of my day activities. I had a horse there named Flame, a Shetlander, whom I often brushed, went for walks with or just cuddled. Flame could’ve been my emotional support animal.