Tag Archives: Psychiatric Medication

Benzodiazepine Use: Benefits and Risks

A few days ago, I was sent an E-mail requesting I post an infographic on my blog about the dangers of benzodiazepines. The infographic was created by a dual diagnosis recovery center for people with a mental illness and co-occurring addiction. Because it is very much focused on the U.S. situation, I cannot repost the infographic here without further comment. I don’t do that anyway. Instead, I’m also sharing my knowledge of and experience with benzodiazepines, their benefits and risks.

The Hidden Dangers of Benzos
All rights reserved. Attribution: first posted on DualDiagnosis.Org

Benzodiazepines are a class of tranquilizing medications, among which are diazepam (Valium) and lorazepam (Ativan). While they can legally be prescribed for a range of conditions – insomnia, anxiety, panic attacks, seizures, etc. -, the Dutch insurance system limits coverage for benzodiazepines to four conditions:


  • Maintenance treatment of epilepsy or as-needed treatment of an epileptic seizure.

  • Treatment of anxiety disorders, when treatment with at least two antidepressants has failed.

  • Treatment of multiple psychiatric conditions that require use of high doses of benzodiazepines.

  • Palliative sedation during end-of-life care.


Physicians who prescribe benzodiazepines for these conditions, need to add the code B2 to the prescription.

I have used benzodiazepines on several occasions. First, in 2006, I was prescribed a benzodiazepine sleeping pill. It was at the time still covered, but no longer would under the current insurance regulations. However, from 2007 on, I’ve used several benzodiazepines for PRN use for irritability. Whether this falls under the multiple psychiatric conditions rule, I do not know, since I am in an institution so medications are covered anyway.

In 2010, I was on Ativan daily for three months. I was on a moderate dose of 3mg/day. After these three months, I told my psychiatrist I felt I no longer needed the Ativan. He changed the prescription to as-needed and I quit taking the benzodiazepine cold turkey. That truly wasn’t a wise choice. A few days from quitting, I was trembling and shaking. At first, I thought it was the antidepressant I’d started taking three weeks prior, but I eventually realized I was probably experiencing Ativan withdrawal. I spoke to my psychiatrist, who put me on a taper schedule that took several months. Ultimately, I spent almost as long trying to taper the Ativan as I’d been on it.

I honestly never found relief from benzodiazepines. Usually, I slept for a few hours then was irritable again. Then again, it seems that with irritability, the goal is to knock you out, not to really make you feel better. I also learned recently that benzodiazepines should really not be prescribed to people with borderline personality disorder, as the anti-anxiety effect causes borderline patients to be disinhibited and potentially become aggressive. I don’t think I ever experienced this myself.

I tend to develop tolerance to benzodiazepines really quickly. With the sleeping pill I took in 2006, I was given ten tablets that I used up over a six-week period. No daily use at all. Still, the last few pills didn’t really work at all. Please realize that, if you got used to one benzodiazepine, you’ll likely develop tolerance to the next pretty soon too. In November and December of 2007, I was on three different benzodiazepines, with about ten benzo-free days in early December. The first, I got used to within five days but kept taking for a month anyway. Then I had the ten days when I was off benzos – but on a stronger tranquilizer that is really an antipsychotic. Then I started taking nitrazepam (Mogadon), one of the more expensive benzos out there. It worked for about two weeks, but I did use the neuroleptic as adjuvant treatment. By the time I’d gotten used to the Mogadon, my doctor thought it would be time for something other than a benzo, but the psychiatrist disagreed and put me on diazepam. That didn’t work and I quit all tranquilizers at the end of December.

I have not been on any benzodiazepines for about a year now. I took Ativan as-needed until the summer of 2013, but it hardly worked so I now take promethazine (Phenergan), a low-potency neuroleptic. I do not want to be on benzos anytime soon again. Then again, I don’t suffer from epilepsy or a significant anxiety disorder and my irritability is kept relatively under control by a daily antipsychotic and PRN Phenergan.

When I ran the above infographic by some fellow bloggers to determine whether it was genuine, some people told me they did great on benzos. If you’ve suffered from severe anxiety for a time and antidepressants have not worked, I can totally see why you’d try benzodiazepines. If you have epilepsy, something has got to drag you out of a seizure. Therefore, even though I have personally not had luck with benzos, I don’t want to say that benzodiazepines are necessarily bad. I like the Dutch insurance policy, making sure that people won’t reach for benzos too soon but those who need them, can get them.

Medicating Away for Autism: Dilemmas and Disillusions

A few weeks ago, I saw an old post on autism and medicating and what’s the dilemma being tweeted again. It got me thinking about my own journey on the path of the medication controversy.

I first learned about autism and medication from the likes of APANA (Autistic People Against Neuroleptic Abuse) and Autistics.org. It was communicated clearly on these sites that autistics should only take medications if the right supports are in place, they’re themselves suffering (as opposed to the parents suffering from the autistic’s behavior) and if the medication is not an antipsychotic. I took this information at face value. When I was myself diagnosed with autism, I became an enthusiastic autistic advocate. I was soon disillusioned.

When the option of medication was first mentioned to me, I was miserable. I had the right supports, although I was soon going to lose them due to moving into independent living. An antipsychotic wasn’t the first medication mentioned. But it was what I ultimatley ended up on. I wrote a blog post the next day about really well-informed consent. I wasn’t really aware of the fact that I had truly been mildly coerced into consenting and that 95% of the “really well-informed” bit came from my own Internet searching rather than the psychiatrist.

I quit my antipsychotic eventually when I realized it was being used as a substitute for proper care. I used the side effects as an excuse, but really I was still miserable, only just not miserable enough for increasing my supports. I was really fortunate that the psychiatrist who ended up admitting me to the hospital three weeks later, didn’t consider prescribing me the same antipsychotic, or any antipsychotic, again.

For years, I was without daily medication. I noticed how the use of PRN oxazepam was coerced, and I wasn’t going to go along with it – unless I was truly miserable. Or unless seclusion was touted as the only alternative.

In late 2009 and early 2010, I had the worst irritability I’d had in years. I knew that I might benefit from more support, but I also knew this wasn’t feasible, and my support was okay at least. So when my psychologist proposed I talk to the psychiatrist about medication, I consented. The psychiatrist gave me plenty of inforation, including many of his reasons for and against particular drugs (mood stabilizer vs. antipsychotic and if an antipsychotic, which one). He also gave me a week to think, and I consider the consent I gave this time for taking the antopsychotic Abilify to be really well-infomred.

My dose, however, had to be increased several times. I remember once telling the substitute psychiatrist, a much less considerate doctor than my regular psychiatrist, that I felt I needed more support, but I was bluntly told off and prescribed a higher dose of Abilify. Of course, legally I could’ve refused, but the irony of informal hospitalization is that you’re mde to believe you have a choice, only you don’t. I had, after all, been threatened with forced discharge if I didn’t consent to seclusion a few years prior, and this time, I didn’t even have a home to go back to, so what choice did I have?

For three years, I did fine on a moderate dose of Abilify. I did get a low dose of the antidepressant Celexa added, which forutnately never had to be increased. Then, in the summer of 2013, I moved to my current institution and soon found I had more meltdowns. I was threatened with the locked ward, in the kind of way where nurses don’t really mean it but just want to scare the crap out of you, so what choice did I have but get my Abilify increased again. And again?

I’m now at almost the highest dose of Abilify that can be prescribed, a five-fold increase from my original dose. I’m feeling really drugged up lately and in a kind of agitated state where I’m too drowsy to get out of bed yet feel irritable nonetheless. I’ve raised this issue with the staff and my psychologist several times, but nothing has come out of it.

Currently, I’m taking an antipsychotic to manage behavior that other people suffer more from than myself while I don’t have proper support. After all, proper support isn’t needed when you aren’t a pain in the neck of the staff, and when you are a pain in the neck, it’s all “attention-seeking” and “overreactivity” and they’ll treat you like crap until you’re begging for a PRN pill. Is this what Autism Daddy means? I’m assuming he wants the right support for his son, but he doesn’t care that other people are drugged up for a dentist’s appointment. Now I know that his son is more severely aggressive than I was when I gave my really well-informed consent to the original dose of Abilify, but I’m still worried.,/P>

As I wrote in my previous post, my psychologist considers medication to be a substitute for proper support. I disagree, but I’m afraid that I just got to go along with it, and the fact that I’m an informally admitted patient only makes this a little harder.

Was My Hospitalization Inevitable?

I was reminded yesterday about the situation surrounding my psychiatric hospitalization in 2007. I had been put on antipsychotic medication three months prior and had quit taking it again three weeks before I ended in crisis and was hospitalized. Yesterday, when talking to my therapist about this situation, she suggested more or less that being hospitalized could’ve been avoided if I just continued taking my meds.

Really, I consider my crisis inevitable. When I was still taking my medication, I was very irritable; just not irritable enough for the crisis team to intervene and hospitalize me. “But other people don’t like to be hospitalized,” my therapist said, as if by quitting my medication I’d somehow manipulated the crisis team into an unnecessary admission. The thing is, I’d been on the edge of a crisis ever since I moved into independent living. Maybe quitting my medication was the final straw, but is it all that strange that you want help when you’re struggling with meltdown after meltdown after meltdown?

I saw this reasoning all along when I still lived independently. I remember my care coordinator once saying that it was better for me to bang my head against the walls of my apartment, than to go outside and scream. Well, what the bleep? Isn’t a person’s safety more important than the person being a pain in the butt? Besides, it isn’t like I made a conscious choice either way.

For clarity’s sake: hospitalizations aren’t fun. The psychiatrist who admitted me, didn’t do so to please me. In fact, I didn’t ask to be hospitalized, as I didn’t know what I needed really. Hospitalizations happen as a last resort. Long-term institutionalizations are certainly not a choice either. And just so you know, the fact that I’m an informal patient doesn’t change that.

Why did I have a full-blown meltdown yesterday after my therapist asked me to name the pros and cons of asking for help less? Why did I feel offended when she suggested that, with medication, I could’ve been kept at home? Why do I struggle with all this “least restrictive environment” bullcrap that I hear everywhere? I’d like to consider my hospitalization avoidable, and maybe it was if I’d just continued taking those pills. But as I said, I was completely on the edge for all those three months. Apparently, however, intervention is only inevitable if you’re literally (nearly) dead, and if you aren’t, quality of life doesn’t matter. Especially not if you’re also a pain in the neck.

mumturnedmom

Multiple Complex Developmental Disorder (McDD)

Multiple Comlex Developmental Disorder (McDD) is recognized as a subtype of PDD-NOS in the Netherlands. It is an autism spectrum disorder in which people also suffer from emotion regulation problems and thought disorders. Its proposed criteria according to the Yale Child Study Center are as follows:


  1. Impaired social behavior/sensitivity, similar to that seen in autism, such as:

    • Social disinterest

    • Detachment, avoidance of others, or withdrawal

    • Impaired peer relations

    • Highly ambivalent attachments

    • Limited capacity for empathy or understanding what others are thinking or feeling


  2. Affective symptoms, including:

    • Impaired regulation of feelings

    • Intense, inappropriate anxiety

    • Recurrent panic

    • Emotional lability, without obvious cause


  3. Thought disorder symptoms, such as:

    • Sudden, irrational intrusions on normal thoughts

    • Magical thinking

    • Confusion between reality and fantasy

    • Delusions such as paranoid thoughts or fantasies of special power



In The Netherlands, slightly different criteria are used. For example, social disinhibition is proposed as a possible symptom in the social impairments category.

In the Dutch Wikipedia, McDD is referred to alternatively as juvenile schizophrenia and juvenile BPD. However, most parent-directed sources highlight the intense anxiety which is at the core of McDD. Psrenting, therefore, needs to be aimed at providing structure and boundaries and helping the child reduce their anxiety and emotional lability. Parents need to refrain from showing too much emotion to prevent the child from absorbing the parent’s emotions.

Children with McDD often experience psychotic symptons or full-blown psychosis in adolescence. The emotion regulation problems become less pronounced as individuals with McDD grow into adults, but social problems an thought diosorders often remain significant. Antipsychotic medications can be used to help reduce psychotic symptoms. Even so, most McDD individuals will need lifelong support.

I do not have a diagnosis of McDD, although I think I may meet its criteria. I remember my parents were asked about thought disorder symptoms and unprovoked emotional outbursts at my first autism assessment, but they said I didn’t have them. In reality, I had a lot of bizarre thoughts as a child and still do have them sometimes, and my parents were confused about the questions on unprovoked outbursts. I have, interestingly, foudn that antipsychotics help more with the emotion regulation problems than with the thought disorder symptoms. This does mean that I suffer in silence soometimes, because I do have strange fears and bizarre thoughts, but am too drugged up to act on them.

When I Shouldn’t Reach for My Meds (But I Do)

Today, I had a discussion with my psychiatrist. I’ve been feeling okay overall, but, when my therapist and social worker got talking to me about going into supported housing, it caused me to be irritable for days. I notice this a lot lately: when I’m able to stay in the present and just do my thing, I’ll still have some mood swings, but they aren’t nearly as severe as when I need to focus on the future. My therapist and I are clearly not on the same page in terms of my goals, and this causes me intense frustration. I’ve reached for my PRN medication almost everyday last week, even though it isn’t effective. At least the though that something would be numbing me and I had some control over my emotions was there.

My psychiatrist pretty much said that situational frustration is not a reason to reach for meds, and he’s right. That’s one of the main reasons I stopped my Risperdal, which had been used to make me just numb enough not to have a crisis while living independently, but not so numb that I didn’t feel the intense pain anymore. In a way, I want nothing to do with my increased dose of Abilify either. It wasn’t increased now, but it’s been increased twice since I came here seven months ago, while I’d been stable at a moderate dose for three years before I cam here. Medication isn’t a cure for shitty circumstances.

Yet I reach for medication everytime I feel frustrated. It’s probably what I’ve been learning to do. I can’t get more support if my therapist doesn’t want me to get it, and it’s still a fact that in psychiatric institutions, patients have little say in their treatment, unless their treatment goals are in line with the latest treatment philosophy. Back when patients had to be locked up for the rest of their lives, people wanting to move into the community, were medicated, secluded and otherwise forced into submission. Now that psychiatric services have to face budget cuts and their philosophy has changed to rehabilition, patients like me, who cannot cope with this pressure, are, albeit more subtly, still forced into submission. Still, the only way to numb the agitation that I feel at people trying to control my life, is to reach for my meds. It isn’t going to get me out of this vicious cycle, but then again, what is?

Antipsychotic Use in Autistics

Someone in a support group for pathological demand avoidance (a form of autism that is mostly only recognized in the UK) asked about using Risperdal (risperidone) for aggression and anxieyt. This prompted me to write about my experiences of medication use, and I want to elaborate on them, particularly as I made an interesitng self-observation today.

There is a lot of controvery surroudning the use of medications, particularly antipsychotics, for autism spectrum disorders. I personally do not disagree with the use of antipsychotics. They have a relatively solid evidence base, especially Risperdal and Abilify (aripiprazole). I have used both myself and currently take Abilify in a fairly high dose.

I have pointed this out before, but I want to say it again: if there are other changes in treatment, placement or support happening near the time you’re wanting to start medication, that’s not a wise moment to start medication. I started Risperdal a week before my move into independent living, and, if it had any effect at all, this was annihilated by the effects of the move. Also, don’t expect antipsychotics to get someone through a rough time These drugs are designed for long-term use and usually take several weeks to kick in. Benzodiazepines are better in this case, but don’t expect medications to cure support needs. Autistic people will always need support.

Antipsychotics are commonly used for aggression and irritability, but I made this interesting self-observation that my Abiilify also seems to help with rigidity and the resulting asocial behavior. I remember a few years ago reading a case study on the use of Abilify for core symptosm of Asperger’s (I’m too lazy to look up the reference). This may pose its own ethical dilemmas, cause what do we want to change about a utistics (especially children or others who are incapacitated) and what falls within the realm of acceptable neurodivergence? I wont’go into this right now.

New Psychiatrist

I spoke to my new psychiatrist for the first time today. He was assigned to me because the old one is too busy and needed to decrease her caseload. At first I was pretty pissed that I’d been assigned a new psychiatrist without prior notice – I only found out when I asked my old one a question about medication. Then on Monday I heard from a nurse that the new one’s Dutch is pretty poor, so I was like: how in the world does someone who doesn’t speak a country’s primary language earn a doctorate?

Fortunately, the psychiatrist’s Dutch is better than I expected. He uses a lot of medical jargon and sometiems has trouble coming up with the right lay term. In that sense it’s good that I studied college-level psychology.

I can’t remember all that he said. My question was for a review of my PRN medication and maybe my antipsychotic. In the end, nothign was changed. He explained about the PRN meds that even with effective drugs, 50% of effectiveness is still placebo. That made it understandable that I don’t notice much effect even from the non-addictive promethazine (Phenergan) after a while. He asked which drugs I’d tried before, and I mentioned having been on most benzodiazepines. For a while, he contemplated prescribing a very low dose of Seroquel XR for sedation, but when I said I was already sleeping a lot, he decided against this. In the end, he advised against meds but recommended I exercise more, sleep less and get a better day-to-day structure. I’m not too sure this will work but it appeals to me. I am not too much in favor of tranquilization, especially since it’s usually the first thing a nurse will suggest when I’m irritable even when other strategies work better. Maybe I’d have had a different attitude had my experience with tranquilizers been positive.

Medication Treatment of ADHD Symptoms in Autistic Children

Autistics often have symptoms of ADHD. These symptoms are often treated with medication. About 15% of autistic children take psychostimulants or atomoxetine (Rosenberg et al, 2010). Stimulants are proven to be effective for ADHD in non-autistic children. Whether the same holds true for autistics, however, had not been systematically researched until now. Reichow, Volkmar & Bloch (2013) examined seven randomized, double=blind, placebo-controlled studies comparing methylphenidate, clonidine or atomoxetine to placebo in children with autism spectrum disorders and ADHD symptoms. Four trials were found for methylphenidate, two for atomoxetine and one for clonidine.

According to Reichow et al. (2013), methylphenidate was found to be effective for ADHD symptoms in autistic children. The effectiveness was slightly lower than it is for typically developing children with ADHD but still statistically significant. There was a greater risk of side effects in autistics, particularly for irritability, depression and withdrawal. The risk for common side effects such as insomnia and decreased appetite was similar to that found in typically developing children. One of the studies involved preschool children, and it was recommended by Reichow et al. after reviewing this study that methylphenidate-taking preschoolers with autis be closely monitored due to increased adverse events.

Clonidine and atomoxetine both showed moderate but not statistically significant effectiveness in autistic children (Reichow et al., 2013). These medications warrant further study, also given the fact that only one or two studies were found that met the inclusion criteria for a systematic review.

References

Reichow B, Volkmar FR, & Bloch MH (2013), Systematic Review and Meta-analysis of Pharmacological Treatment of the Symptoms of Attention-Deficit/Hyperactivity Disorder in Children with Pervasive Developmenetal Disorders. Journal of Autism and Developmental Disorders, 43(10):2435-2441. DOI: 10.1007/s10803-013-1793-z.

Rosenberg R, Mandell BS, Farmer JE, Law JK, Marvin AR, & Law PA (2010). Psychotropic Medication Use among Children with Autism Spectrum Disorders Enrolled in a National Registry, 2007-2008. Journal of Autism and Developmental Disorders, 40(3):342-351. DOI: 10.1007/s10803-009-0878-1.

Autism, Special Interests, and Elevated Moods

Many years ago, I read an article on Suite101 or About.com or the like that discussed similarities between Asperger’s Syndrome and bipolar disorder. The parent who wrote the article described her son’s mood swings from elated to depressed. However, she realized that these mood swings were related to whether the son could engage in some special interest.

I find the same thing happen to me, but in my case, it also ties in with the dissociative or emotion dysregulation symptoms. I find that when I’m in a particular personality state, I engage in a certain special interest a lot more than when I’m in another state. For example, Clarissa is my blogger part, who is behind most of the posts on this blog. Annemiek is my crafter. And I at this point can’t think of anyone else.

Getting back to mood swings, I must say that I get very elated when I engage in a particular interest for a certain period of time. I uttered the phrase that I would’ve been manic if I experienced this (mania) at all. In a way, this is extremely inappropriate and comparable to when a currently mentally healthy person talks about “going all OCD”. I in no way want to say I suffer from bipolar (hypo)mania, but these mood swings do get problematic at times.

For example, last night I didn’t sleep at all. I spent around $80 on useless online services without even bothering to read the not-so-fine print that clearly said these services would not be working for me. I actually took a PRN Phenergan at 2:00 AM, before I went ont he shopping spree, but swung right through it. Phenergan, for those not familiar with it, is a strong tranquilizer or low-potency neuroleptic. I’m now relatively calm again, so again I in no way mean to compare myself to people who have these experiences for weeks on end, but I do see actually how this could become a problem.

So, should autism parents limit their children’s special interests in order to prvent this from happening. I don’t think this is universally the case, but parents must teach their children about time and money management. I, having been pretty stingy as a child and teen, never really had to learn about this. I always had enough money on my hands anyway. I actually must say I have no clue about budgeting, and really don’t know whether I need to learn it yet. I guess so.

To Medicate or Not to Medicate?

Yesterday, I was searching for autism bblogs and stumbled across Pam Byrne’s blog. In one of her latest posts, she writes about her son’s increasing and then decreasing behavior problems. One of the things that stuck out to me was the tough choice Pam made to medicate Alex.

Back when I first learned aobut autism, it was through Autistics.org and other autistic advocacy sites. I was a firm opponent of medicating for behavioral control, believing that an autistic child or adult should be helped with proper supports, not dulling meds. Particularly neuroleptics (antipsychotics) can cause severe cognitive dulling and other side effects with autistics, so I reasoned one should stay away from those especially.

That was in like 2006 to early 2007. In July of 2007, however, I was about to move to a new city and into independent living. I was having terrible meltdowns related to this. My community psychiatric nurse suggested a psychiatrist’s consulttion, and I agreed. The psychiatirst listened to my story and thought for a bit. Then she started to describe what she thought medication should do for me, and I paged my inner pharma encyclopedia to find out what she might be thinking of prescribing. She suggested Risperdal, an antypical antipsychotic. I had little opportunity to change my situation in any other way – the move, that was one of the worst moves in my life, had already been scheduled for the next week -, so I felt I had no other choice but to consent to the medication.

This was a bad choice: I had quite serious side effects that weren’t being taken seriously, and the med was used to dull me into submission when in fact living on my own was not suitable for me. I tapered myself off the Risperdal two months into my new living situation. Three weeks later, I landed in a psychiatric crisis tht led to hospitalization.

The psychiatrist who admitted me into the hospital recognized the need for better supports rather than medication. I agreed and was med-free apart from a PRN tranqilizer now and then for over two years.

However, supports have their limits. Especially in a society that relies on massive budget cuts, it’s not like you can actually get perfect supports. I at least can’t. Also, I have always wondered whether medication could somehow help me reduce the overlaod that is actually quite inherent in my experience of autism. Medication should not be used to manage behavior in an unsuitable situation, but what if one’s support situation is as suitable as can be? Could meds actually calm the autistic mind when it is nonsituationally unquiet?

I asked to be put back on meds in early 2010. The medication suggested by my psychiatrist this time was Abilify, another atypical antipsychotic. And to be quite honest, I like it. I started at a very lwo dose, which had to be increased three times. Not always did I agree to this, in the sense that on occasion I’ve felt that supports could’ve been improved, but they won’t whether I’m on meds or not. I have minimal side effects even on a pretty high dose of Abilify, and I can tell, three weeks after my l ast increase, that I’m happier this way. So is Pam’s Alex. Of course, with a child or non-communicative or intellectualy disabled adult, it’s harder to tell whether the person is truly happier than with a person like myself, who can communicate reasonably well. This is why I still advocate taking proper care when thinking of putting a child or communicatively impaired or intellectually disabled adult on an antipsychotic. These meds do dull cognition, and it can’t be known in these cases whether the person is truly less irritable. I strongly oppose the idea that this is not important, except when a person is severely aggressive or self-destructive. In cases other than this, a person should only be put on meds if they’ll actually be feeling better. I do, and going on Abilify was therefore one of the better decisions I’ve made in my life.