Benzos As a “Bandaid” for Serious Mental Illness: My Experiences

Posted on by Astrid

Earlier today, Ashley of Mental Health @ Home wrote an interesting article about the role of benzodiazepines in mental health treatment. While benzos can be useful as short-term treatment or PRN medication for panic disorder, generalized anxiety disorder, social anxiety or insomnia, they are often used as a go-to “bandaid” med for all kinds of mental health conditions. And by “bandaid”, I don’t just mean short-term.

The first benzodiazepine I was prescribed, was the sleeping pill temazepam (Restoril) by my GP in 2006. I was suffering with significant insomnia, but really I was suffering with what I now know is a combination of the onset of autistic burnout and my dissociative shell cracking, if that makes sense. I was given ten pills to use over the course of a month at least. I took six weeks to use them up and refused to get a refill even though my staff at the independence training home nagged me about it.

Then, once in the psychiatric hospital a year later, I used a number of different benzos, one after the other, mostly for sleep too. I however also got put on oxazepam (Serax) as a PRN medication for my agitation. Whenever I took it, I’d become hazy, fall asleep for an hour or so and wake up just as agitated as I was before or more so.

At the time though, I was seen as just autistic if that at all. More so, I was seen as a manipulative, challenging pain in the neck of the nursing staff. It hadn’t been come to the surface yet that I was a trauma survivor and, if it had, no-one cared.

Benzos can cause dissociation to worsen in people with dissociative disorders. Indeed, I find that I do become more fuzzy and I really don’t like it. Benzos can also cause people with borderline personality disorder to become more irritable or impulsive. While I personally haven’t noticed I become particularly aggressive on benzos, like I mentioned above, after the first effects wear off, I do notice I become at least as irritable as I was before taking the medication. I used to attribute this to the fact that the reason for my agitation wasn’t solved by my taking a pill.

After all, one thing that Ashley doesn’t cover is the fact that people with severe mental illness who get prescribed benzos as bandaids for agitation, may very well have good reason to be agitated. I found that often the nursing staff in the mental hospital weren’t following my care plan or my crisis prevention plan at all and, when I got irritable as a result, I was quickly directed to take my Serax.

All this took place in 2007 or 2008, before I was diagnosed with DID or PTSD or BPD for that matter. Once diagnosed with these, I still ended up with a prescription for lorazepam (Ativan) though. In fact, I at one point took it at a relatively high dose of 3mg per day for several months. Thankfully, my withdrawal symptoms once quitting cold turkey due to a miscommunication with my psychiatrist, were physical only and I was able to go back on it and taper slowly soon enough.

Currently, I do have a prescription for lorazepam as a tranquilizer for when I have a dental procedure. Now that I am thinking about all the things I read in Ashley’s article, as well as what I’ve been discussing with my psychiatrist recently about my fear of losing control, I’m not even sure I’m going to take the medication when the time comes to have dental work done. Which, I hope, isn’t anytime soon.

A Productive Appointment With My Psychiatrist

Posted on by Astrid

I had an appointment with my psychiatrist today. Last week, I had already raised some issues relating to my medication with my nurse practitioner and asked to see the psychiatrist about them.

Among other things, I finally dared to ask for them to consider lowering my aripiprazole (Abilify) dose. I have been on this antipsychotic for nearly twelve years and on my current dose of 30mg, which is the max dose, for about five or six of those years. I have had the wish to lower my dosage for years, but was always asked to wait for a while to stabilize. Now that my one-on-one has been approved for the coming two years and I’m relatively stable, I thought further waiting would be senseless.

My psychiatrist today proposed to lower my dosage in steps of 5mg each, while remaining on a new dosage for three months. She claims that the first two weeks, I won’t see any effects of the lowering of my dosage so any change in behavior doesn’t count as a sign that my dose needs to be upped again. When I wrote in a Facebook group about my lowering my aripiprazole, I was met with surprise at the slow taper. Indeed, I’m not sure where my psychiatrist got the idea from that the first two weeks don’t count, since aripiprazole has a half-life of about 72 hours, not two weeks. However, since I don’t suffer with any major side effects, I don’t see why the slow taper would be bad.

My psychiatrist said that we won’t have a goal dosage in mind, so we’ll keep tapering until it’s no longer the right thing. Yes, even if this means I can do without aripiprazole altogether eventually. I was a little shocked when she mentioned the possibility that I might not need my aripiprazole at all at one point. Of course, given the slow taper, this will take like 18 months or so, but I don’t mind.

I won’t start my taper until next month, because first we decided to increase my topiramate (Topamax) by yet another 25mg in the evening. Then I’ll be taking 50mg in the evening and 25mg in the morning. This is still a pretty low dosage even for trauma-related symptoms. It is hoped that, by doing this, we’ll help reduce my night-time anxiety even more and I won’t need my PRN quetiapine (Seroquel) anymore. After all, that wasn’t helping with my anxiety really. I originally got my quetiapine when I was still experiencing a lot of overload-related irritability. Now it’s more anxiety and PTSD that’s causing me to feel strong distress, so topiramate may be a better fit. Of course, topiramate is a daily medication, but if it can prevent me experiencing significant distress, I’m willing to try it.

I do feel a little weird, in that I was always taught that medication isn’t a substitute for coping skills or support and at the same time that it’s either one or the other. I mean, even Dutch care funding regulations at least used to say that if someone was medicated for something, they no longer qualified for support in this particular area. My psychiatrist today called medication a “chemical nurse”, in that a nurse’s role is to help calm you down when in crisis and that’s what meds do too. Now that I have the best human support I can get, I think it’s time to figure out the best medication I can get too.

Lastly, we discussed my getting medication specifically in prep for dental treatment. I explained that, after getting seven cavities filled without anesthetic many years ago, I have pretty bad anxiety but it shows itself in freezing. We decided I could take lorazepam (Ativan) 2.5mg the morning before the procedure and then when leaving (the surgery is about a 45-minute drive away), I could take another 1mg. The psychiatrist said I could skip the 1mg if I was feeling really drowsy, but my staff said the dentist can deal with me even if I am.

Overall, I’m pretty satisfied with the results of this appointment. My nurse practitioner should have sent the prescription for the increased topiramate to the pharmacy and that should be filled next week.

A Really Validating Psychiatrist’s Appt

Posted on by Astrid

Today, we had our first appointment with the psychiatrist from the local mental health team. To my surprise, our nurse practitioner came to get us out of the waiting room. He attended the appt too though and looking back, it was really good.

I started to explain that our PRN lorazepam hardly worked at all. The psychiatrist seemed to think that’s a bit odd. We ultimately came to the conclusion that it does do something but the anxiolytic effect causes more emotions to surface.

The psychiatrist then started to talk about the “pieces”, as we call ourselves when talking to mental health professionals. She asked whether I’d ever been in touch with people with similar experiences. This utterly surprised me, as our nurse practitioner had said comparing our experience with others’ is useless. I felt able to share that I’d Googled my symptoms and come across dissociation and had met other people with similar symptoms that way. I did say I don’t really want a diagnosis.

The psychiatrist asked whether each of us experiences the effects of medication differently. Thankfully not, but some are more willing to take medication and to let it work than others. She explained that the mind is stronger than a pill, so if we don’t want to calm down, no medication can make us.

She ended up prescribing us a low dose of quetiapine (Seroquel). This is an antipsychotic when used at higher doses (like in the 100s of mg) but has a greater calming effect when prescribed at lower doses. She told me she had learned how this works – why its calming effect is greater at lower doses -, but had forgotten. I said I’d find out about it someday and let her know.

At one point, I started zoning out. The psychiatrist as well as the care staff who attended, noticed. I honestly had no idea other people, let alone virtual strangers like the psychiatrist, could tell if I didn’t say I was feeling out of it. The psychiatrist told me it’s a coping mechanism and fighting it will only make it last longer. I will work with my nurse practitioner on ways of coping with it when alone.

I also mentioned compulsively looking up things that trigger us online. Like, I now remember yesterday someone was reading a newspaper story about Russian opposition leader Navalny’s poisoning. Then one of the littles got triggered into thinking someone had put poison in her underwear too. The same happens on a more severe scale with us compulsively looking at other places to live. Our nurse practitioner said he’s definitely going to remember this for our upcoming appts.

Looking back, I’m so glad we had this appointment and also so glad our nurse practitioner attended too. He had seemed a bit dismissive when we had an appointment on Thursday, but we were able to express that via E-mail too.

Clarissa

Another Appointment With My CPN

Posted on by Astrid

Today, I had an appt with my CPN again. I can’t remember all the details, but I did tell her that I had had a breakdown on Sunday. I was completely honest, sharing that I had seen and heard things that aren’t there. It was as if something was truly telling me I’m a monster and everyone will leave me. Then I saw some form of Heavenly light. I can’t describe it really and it wasn’t very vivid even then, but it was more than mere wishful thinking.

My CPN encouraged me to discuss this with the psychiatrist when I see her on the 22nd. I really hope she can help me. My husband later asked me whether it was truly psychosis or a panic attack. I don’t think I was full-on psychotic but my perceptions and thoughts were definitely headed that way. My CPN agreed.

I can’t remember whether I told my CPN, but I had these thoughts and perceptions once before. Well, a few weeks ago I had them too, back when this depressive stuff all started, but then it wasn’t that bad. Back in December of 2009, I think it was even on Christmas, it was. I had run off from the psych ward in the snow. I picked up snowballs and somehow was convinced they contained drug needles. I wasn’t depressed at the time, just batshit crazy. It lasted only for a few hours though, but came back several times within the next few months, only disappearing when I was put on Abilify.

Now I’m pretty pessimistic. After all, I’m already on the highest dose of both Abilify and the antidepressant Celexa. (I mention this because I’m pretty sure I’m depressed, whether clinically or not.) I’m hoping though that the psychiatrist can put me on some PRN medication other than lorazepam, which I can use if I fully break down again. I know I have had experience with Phenergan (promethazine, a low-potency neuroleptic) and that worked great when I was on no other medication but not at all once I was on my current regimen. Maybe the psychiatrist can prescribe me something similar but different.

I also talked to my CPN about the incessant crying. She told me this may be useful. After all, I learned from a young age on to hide all negative emotions except for frustration (because I couldn’t hide that). In fact, I was told that I was “too quick to anger”, but this was used as an excuse to force me to repress every emotion other than a smile. I hadn’t been able to cry unless I was angry first until only a few months ago. As such, my CPN reasoned that I might have a lot of catching up to do.

Working On Us Prompt: Psychiatric Medication

Posted on by Astrid

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.