#WeekendCoffeeShare (August 6, 2022)

Posted on by Astrid

Hi everyone on this first Saturday of August. Okay, that starting phrase gets boring, but who cares? Well, me, but I can’t think of any better way to start my post. I’m joining #WeekendCoffeeShare today. I’ve had five cups of coffee already today and it’s mid-afternoon. Want one too? I hope I haven’t used up the whole pot. Well, it’s a virtual coffee share. Let’s have a coffee and let’s chat.

If we were having coffee, I’d ask about your weather as usual. Ours has been mostly warm, sometimes hot. On Wednesday in particular, the daytime temperature rose to 31°C. Today, it’s only about 21°C. I even wore long sleeves this morning when going out for a walk.

If we were having coffee, I would share that I discovered a function I hadn’t previously known about existed in JAWS, my computer’s screen reader. When you press INSERT+4, INSERT being the designated JAWS key, JAWS displays a menu with special characters to select from, such as the euro sign, the degrees sign I used above, etc. Before I knew about this function, I’d do a Google search for something that’d pop up the character I wanted, copy/paste it into a text document and copy/paste from that document to my blog. However, if I wanted a character that wasn’t yet in the document, I’d need to do a search all over again. Besides, it’d mean having to open a separate app, in this case Notepad, and copy/pasting from there rather than selecting the character from the menu.

If we were having coffee, I’d share that, today, I started on 25mg rather than 27.5mg of aripiprazole (Abilify), my antipsychotic. So far, so good, but I’m not expecting any effects as of yet, as aripiprazole has a half life of 72 hours and the dosage decrease is so small anyway. This is my second decrease out of possibly twelve, each taking three months. That’s an incredibly slow taper, but it’s this way so that any possible changes in my mood and/or behavior can be observed over time.

If we were having coffee, I would tell you that I’ve been busy crafting this past week. Someone from a neighboring care home has her birthday next week and a fellow resident from my care home has his birthday on the 25th. I asked the woman who has her birthday next week what her favorite color is and she immediately understood why. “Ah, you know when I have my birthday!” she exclaimed. Of course, I didn’t reveal anything else. I am creating a necklace with all polymer clay beads for her. I did this for someone else, who had her birthday at the end of January, and back then it’d taken me weeks to create all the beads. Now, I was able to do half of them in one day. The other half is a little harder, because that color of clay is more difficult to work with.

For the man who’s having his birthday on the 25th, I bought a canvas, which I painted black this week and am going to decorate with polymer clay cookie cutter shapes once I’ve finished the necklace. I am doing his name and a car. Since the challenge theme for this month in the Dutch polymer clay Facebook group is mixed media, I’m also thinking of including some other technique, but I’m not yet sure what.

If we were having coffee, lastly I’d share that today, my husband went to get his new-to-him car, a Fiat Panda. He’s coming for a visit tomorrow. We originally thought of driving to some town or city in the area, but neither of us can think of an interesting one, so we may just go to Subway to have lunch.

How have you been?

Moaning About My Meds

Posted on by Astrid

It’s 8:30PM and I’m probably going to bed before 10PM tonight. Since upping my topiramate (Topamax) a week ago, I’ve been more sleepy earlier at night and consequently going to bed sometimes by as early as 9PM or even earlier. Unfortunately, the quality of my sleep doesn’t seem to be better.

Last night, I had a horrible dream in which my staff were chattering among themselves and all the while I was trying to get their attention because I was anxious, but to no avail. That’s how I’ve been feeling ever since upping my medication: I am still anxious, but too drowsy to react to it. In fact, I’m not even 100% sure my experience last night was completely in my dreams, because, when I awoke, I couldn’t get to the level of alertness necessary to press the call button.

I don’t really mind the drowsiness as much. Or the tingling in my fingers and toes, which I’ve started to experience since increasing my topiramate dosage too. But the medication does have to work for my hypervigilance. And hypervigilance is not just an outer reactivity, or is it?

My assigned home staff did say yesterday that she judges from the staff’s reporting that I’m calmer, because I come calling out for help less at the times I’m not having my one-on-one. That comment triggered me intensely, because it made me think I’m supposed to take my topiramate so that I don’t ask for help outside of my assigned support hours. I’m reminded of my psychiatrist’s comment about meds as a “chemical nurse” again, something I now don’t see as quite as validating a statement.

This evening, I did E-mail my nurse practitioner my concerns. Of course, the topiramate’s positive effects might still need time to kick in, but if they don’t, I’d rather go back to my old dose. Which, of course, means we will need to find me a different PRN medication or something for when I go into crisis. It also means we’ll need to postpone my aripiprazole (Abilify) taper. Honestly though, I don’t really care about those.

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.

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.

My Medication Musings: Abilify

Posted on by Astrid

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.

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.