#WeekendCoffeeShare (August 10, 2024)

Posted on by Astrid

Hi everyone on this beautiful Saturday in August. I’m joining #WeekendCoffeeShare today. It’s nearly 10PM, so I’ve long had my last cup of coffee and my soft drink for the day. I, however, do have Kinder Country candy bars in my cupboard, as well as lots of other candy. I bet I could persuade the staff to open the cupboard for you, but I can’t persuade them to brew you a coffee. Water will have to do. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d start by sharing about the weather. It’s mostly been quite warm with daytime temps in the mid to high 20s Celsius. We did get rain yesterday, but thankfully no thunderstorms. On Monday, the daytime high is supposed to be 32°C. I’m a warm weather person, but that’s too hot even for my liking.

If we were having coffee, I’d tell you I did a lot of walking over the past week. On four days out of the past seven, I got in over 100 exercise minutes according to my Apple Watch and I didn’t even go swimming this week, as the institution pool is closed now.

If we were having coffee, I would tell you that I’ve been struggling a lot lately. Part of the reason I’m showing it more might be the fact that I discontinued my morning dose of topiramate a little over a month ago, but it’s not (just) that which explains why I’m feeling like crap. After all, I’ve been feeling like crap for months. Make that years, honestly. I am realizing I never recovered from the blow to my self-esteem that was being more or less kicked out of the care home in Raalte. No, don’t interrupt that I wasn’t kicked out, since I know I literally wasn’t. However, when I realized the intensive support home was the nightmare it was and asked to be put on the waiting list to return (or actually return, since I asked before my room was filled up), I was told that some people had actually been glad that I’d left.

Why is this relevant now? Because, even though my current home is better than the intensive support home, I’m still feeling like I’m massively overloaded and my capabilities are massively overestimated when I’m struggling. This leads to staff not following my current support agreements, which even when followed to a T create just about barely manageable a care situation if even that when I’m feeling low (they’re okay when I’m feeling good). I know I said the same of my day schedule back at the intensive support home, but I only said so because my staff there had already decided I was a spoiled brat and wouldn’t stop complaining until I had full-time one-to-one. Which was almost correct before topiramate, but it wasn’t when I was on this medication. And it isn’t now either. After all, when I wished for near full-time one-on-one back in 2021, I didn’t realize its implications in care. I do now.

I realize I might need to go back on my full dose of topiramate (even though the evening dose is going to be discontinued next week too), but I don’t think it’s an excuse to keep everything else the exact same, since my needs weren’t being met before I discontinued this medication. In short, yes, the med might get me to shut up, or it might not, but either way something else needs to change too.

After many meltdowns, I finally wrote down my care needs in a document and E-mailed this to my assigned staff. I did water them down a little to make them manageable within the way my home operates, but not so much that I’d have every reason to still complain if the team decide to implement this. At the end of the document, I put in a brief summary of my care in Raalte (in early 2022, so when the team had already fallen apart) and asked for recognition of the improvements I’ve made since. I mean, I don’t seriously request to be moved now (I do blurt it out during meltdowns) and I wish I got half as suitable care as I got back then.

The support coordinator mostly making decisions about me, is on vacation now, but she’ll return on Tuesday. I hope I’ll have a meeting with her and the behavior specialist soon to discuss my needs.

If we were having coffee, lastly I’d share some positives of the day today. I realize this post was mostly negative, after all, but today was a pretty good day. Here are some reasons why:

  • My assigned staff was here this morning.

  • She brought me a cup of coffee right when waking me up.

  • Even though we were late finishing my morning routine, the staff coming for my morning activity came right on time.

  • I went for three walks today.

  • I had a waffle with forest fruit jelly, powdered sugar and whipped cream on it with my afternoon coffee. And a macaron in the morning. Sorry not sorry, dietitian.

  • I was able to ask the staff who did my afternoon activity with me, whether she’s leaving (which I thought because I’d seen her with a client from another home) and thankfully she said no. I am proud of myself for up front asking her rather than getting distressed.

My Medication Musings: Topamax

Posted on by Astrid

Hi everyone. I had a med review today, which prompted me to write a post in my series discussing the various medications I’ve been prescribed. Today’s med review mostly concerned topiramate (Topamax), so I’ll write about that.

Topamax is an anticonvulsant usually prescribed for epilepsy. It has also shown effectiveness in treating migraines. How exactly it works is not known, but it does in these cases, although it’s not the first choice of treatment for either epilepsy or migraines.

I have neither epilepsy nor migraines. Besides, the highest dose of Topamax I ever took, 75mg/day, is far lower than the effective dose for these conditions. The reason I took Topamax is because it is also believed to help with PTSD-related nightmares and flashbacks. The way my psychiatrist explained it to me back in 2021, it might even lower my general distress level slightly. Well, it didn’t.

Topiramate can have significant side effects, including cognitive impairment, tingling in the hands and feet, and others. On 75mg, I experienced slight tingling, but I honestly don’t know whether I ever had any other side effects. I do have quite horrible tremors in my hands and legs, but these could be from any of my medications or from something unrelated altogether, although my doctor didn’t say what.

I, after some tweaking, eventually settled on a dose of 25mg twice daily. I never really questioned its effectiveness until I was wanting to taper another medication, Abilify, about two months ago and my prescribing physician and I reviewed all of my current psych meds. I said that none of my meds except for my antidepressant, Celexa, seemed particularly effective. The doctor then decided I could discontinue my morning dose of Topamax.

Today, I had a review. Though I have been a bit more distressed lately than usual, this could have many causes, including fellow clients being in distress more than usual too. Furthermore, I don’t experience an increase in nightmares or flashbacks. I admitted that most of my flashbacks are emotional, in the sense that I get dysregulated when triggered rather than having a visual reliving. I’m not sure whether these have increased.

When the doctor asked me what I wanted, I was clear: to discontinue my other 25mg of Topamax as soon as possible. This will happen in mid-August.

I am, honestly speaking, also guided by general principles in addition to personal experience: I learned about a year ago that a then recent systematic review had disproven the effectiveness of topiramate for PTSD-related symptoms.

#WeekendCoffeeShare (July 6, 2024)

Posted on by Astrid

Hi everyone. Today, I’m joining #WeekendCoffeeShare. As I start typing my post, I’ve just had dinner, but I probably won’t be finished with my post until after my evening coffee, as I’ll take a break from writing for my evening activity time slot. In case I am able to offer you a virtual coffee – which I will anyway, since it’s virtual -, I will offer you a stroopwafel biscuit with it too. I bought those at the supermarket this afternoon, because the staff ordering groceries this week either forgot to order large cookies for the weekend or thought they’re bad for our health. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d moan about the weather. It’s been rainy and chilly most of the week with daytime temperatures barely reaching 20°C. On Wednesday, the daytime high in fact was as low as 16°C.

If we were having coffee, next I’d share that I tore my Apple Watch wristband in two last week. That is, I pulled a tear into it when putting it on once, then when trying to put it on once more thinking I could still use another hole, I tore the entire thing in two, thereby dropping my Apple Watch. Thankfully, it didn’t break, but I couldn’t use it for a couple of days because of having no wristband. I mean, the wristband that broke wasn’t the original one, but somehow I must’ve discarded part of the original, since I could only find half of it.

I initially tried to order a new wristband and screen protector online, but the Apple Store would only let me pay by credit card and, though I did manage to order a screen protector off Bol.com, it was delivered to my in-laws’ house and hadn’t been delivered there yet by the time my mother-in-law visited me on Tuesday. I finally decided to just give it a try and order a wristband at another store and have it delivered to the care home. Like I’ve said a few times, the care home does have its own postal code, but I was originally instructed to address mail to the main building and add my home as second address line. Bol.com won’t accept second address lines and so I always used to have them deliver to my in-laws. Not anymore, since the wristband, addressed to the care home, arrived promptly and so did the screen protector I ordered that evening. Now I’ll have two screen protectors once my spouse brings the one that’s lying around at my in-laws’, but who cares? I have a working Apple Watch at last!

If we were having coffee, I’d tell you that the fact that it was raining plus the fact that I didn’t have my Apple Watch meant I didn’t walk nearly as much over the past week as I usually do. On Monday, I got pretty frustrated, because a temp worker happened to be assigned my two-hour activity time slot three times this week. Granted, he’s a regular temp worker here, but I had not yet trusted him enough to do anything other than play games and go for medium-long walks. On Monday I was anticipating two hours of dice games because of the weather, but thankfully it stopped raining eventually and we could go for a short walk.

Then on Tuesday, he told one of my most trusted staff that he’d love to work with clay with me. On Monday, the way he’d suggested we work with clay, it sounded as though he was just rattling off my activity list and I don’t do clay with staff I don’t trust to show at least some interest in it. I mean, they don’t need to know anything about polymer clay or even crafts in general, but if they’re the type to just sit around playing on their phone, a complex activity like polymer clay isn’t for them and me to work on together.

So on Wednesday, I decided to take the plunge and make a unicorn with him. At first, I used Cernit, which was way too soft, so I eventually gave up and chose Fimo. He asked to take the finished unicorn home with him to show his children, which I was happy to allow him to after I’d taken a picture, since I have many unicorns anyway.

Polymer Clay Unicorn

If we were having coffee, I’d tell you I started tapering one of my medications yesterday. It’s not the medication I originally wanted to taper, which was my antipsychotic, aripiprazole (Abilify). Instead, the intellectual disability physician suggested I discontinue my morning dose of topiramate (Topamax), which was supposed to help against nightmares and flashbacks. So far, I’m not noticing any difference good or bad, but it’s still early days of course.

If we were having coffee, lastly I’d tell you all to come to my home tomorrow. No, not really, but we will have a barbecue here. The parents of one of my fellow clients organize it, so I decided to buy them some chocolate as a thank-you gift.

#WeekendCoffeeShare (February 6, 2022)

Posted on by Astrid

Hi everyone on this rainy, windy Sunday afternoon. I’m really regretting having started the landing page for #Write28Days rather than just having linked up some archive of the tag or something, as today I’m already a day behind and it looks weird to add posts to my landing page again now. Okay, maybe that’s just my autistic brain acting up. Anyway, this afternoon I’m joining #WeekendCoffeeShare. If I feel so inclined, I’m going to add another post on my #Write28Days topic tonight, but again I won’t promise I will.

I’ve just had my afternoon coffee. I’m supposed to have a serving of fruit with that. Since the supermarket delivered 5kg of pears yesterday, the staff badly wanted me to eat a pear. Thing is, I’m not a fan. Besides, it’s not my problem either the supermarket got the order wrong or my staff mistyped it in the system. They should have been five pears, not 5kg. Anyway, I chose a banana, but if you all would like a pear (or two) with your coffee, tea or soft drink, we’ve got loads! Let’s have a drink and let’s catch up.

If we were having coffee, I’d share some more details than I did yesterday about my psychiatrist’s appointment on Tuesday. First, we decided to decrease my topiramate (Topamax) dose again to 25mg morning and 25mg evening, because the other 25mg I was taking in the evening was only giving me side effects and no positive effects. We also discussed my fear of letting go of my sense of control particularly in the evening and at night when getting ready for sleep. This means that traditional anti-anxiety medications or sleeping pills are pretty much out of the question for me, since they’d cause me to get drowsy and hence by definition lose a bit of control. Then, I’d fight the effect of those pills and get even more anxious. The psychiatrist instead prescribed me pregabalin (Lyrica). This, like topiramate, is originally an anticonvulsant, but it also works for anxiety. I would be starting with one 75mg tablet on Saturday early evening (around 5PM, when we have dinner here).

The psychiatrist also recommended that my nurse practitioner talk to the mental health agency’s psychologist to see if she can offer me ideas for coping with the anxiety. My nurse practitioner is also going to discuss this with my care facility’s behavior specialist.

If we were having coffee, I’d tell you that, indeed, I started on my decreased topiramate dosage on Tuesday right away. I slept great my first night and originally thought maybe this was the solution after all. It wasn’t to be though, as the next day I was right back to being sleepless and anxious.

Then yesterday I was anxiously awaiting starting my pregabalin at 5PM only to find out first that the staff thought it was put in the med system for 8PM. Then, once they took a closer look, they found out the pharmacy had put it in there for 8AM and the morning staff had indeed given it to me. I’d apparently taken it without noticing. No side effects so far, but this really is quite stupid, as there’s a reason I should be taking it early in the evening. I E-mailed my nurse practitioner, who will hopefully get back to me tomorrow. By the way, I also noticed I got a capsule rather than a tablet. The dosage is right, thankfully.

If we were having coffee, I would share that, yesterday, I decided to order soft pastels to use with my polymer clay. They should be getting here any moment, as thanks to my Select membership with Bol.com, I can have stuff delivered for free any day of the week.

If we were having coffee, I’d tell you that I asked about sealing my polymer clay creations if I’d used acrylic paint or soft pastels on them. I particularly commented that I don’t want to use resin for this, as it’s rather risky with the UV or fumes of the two-component epoxy. Thankfully, I was reassured that sealing isn’t really necessary and, if it is, I can use other products than resin, such as floorboard protector or liquid clay.

If we were having coffee, lastly I’d share that, due to the high winds, my husband didn’t visit today. He didn’t want to risk driving on the highway in his small Daihatsu Cuore, particularly near Lobith, where they’d issued a weather warning. Better luck next week!

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.

An Unbelievably Good Psychiatrist’s Appt Yesterday

Posted on by Astrid

Yesterday, I didn’t blog, because I was overwhelmed and frustrated all evening. The frustration is a topic for another time. My overwhelm was mostly positive in a way, in that I’d had a psychiatrist’s appointment in the morning and was overcome with disbelief at how understanding she was. That in turn triggered feelings of disbelief at my current life situation in general, which triggered memories of trauma.

I’d seen this psychiatrist once before, last December. Then, she had switched my PRN medication from lorazepam to quetiapine. Now was the time to discuss whether this was the right medication for me. I wasn’t sure to begin with. I explained truthfully that, while the medication helps somewhat with my oversensitivity to stimuli like noise, it doesn’t help with the anxiety and PTSD symptoms. I didn’t mention PTSD as such, but I did mention that my basic level of arousal is already pretty high. She asked me to describe how I moved from my baseline, which I explained was already a five on a 1-10 scale, to a level ten. I explained that I move very quickly and, once I’m at a ten, I’m too overwhelmed and unable to process stuff to take a quetiapine. Then, when I recover slightly to, say, a level eight, I can take the medication and it helps me get back to my baseline level of five.

I can’t remember how we got talking about it, but I assume my nurse practitioner already told her some things about my anxiety. I mean, we got talking about my fear of going to sleep, which I up to that point had hardly realized was maybe an actual fear of going to sleep because of nightmares. Until this point, I’d always assumed it was some form of fear of abandonment, as the night staff isn’t in my home all the time.

The psychiatrist pretty quickly got to her suggestion, which is adding a low dose of topiramate (Topamax) to my daily medications. I had heard of this medication before and a person I know online, had gotten it at his own request to help with PTSD-related nightmares. This person got it only for a few nights when he had to endure a triggering situation though. Besides, I don’t have nightmares every night. So before I agreed to it, I asked the psychiatrist to explain what it would do. She said it’s normally prescribed for epilepsy or migraine, but low doses are also found to be effective for trauma-related symptoms. She explained that some people love this medication and some hate it due to its side effects. At first, I’ll get one 25mg tablet to be taken at night. I’ll notice any side effects I’m going to get within the first several days and can then stop right away if they’re too unpleasant. If I tolerate this medication, the dose can be upped, in which case I’ll need to take the medication twice daily. The highest dose she usually goes to for PTSD is 150mg a day. She said that it should help with nightmares, but also could be helpful in preventing me getting triggered and having flashbacks often during the day.

I loved how understanding she was of my symptoms. I can’t even remember having said that I experience flashbacks, but I quite often do indeed. She said that, though I can continue to take my PRN quetiapine, that one dulls me a bit, while the topiramate should actually make me less susceptible to flashbacks. It reminds me of an explanation of the different effects of antipsychotics vs. anticonvulsants in helping with sensory overreactivity that I once read. It said something like, imagine overload is hearing a hated radio channel at top volume in your head. Both antipsychotics and anticonvulsants change the channel, but while antipsychotics give you headphones, anticonvulsants actually lower the volume of the radio. Of course, I will continue to take my daily antipsychotic (aripiprazole) and antidepressant (citalopram).

A possibly not-so-undesirable side effect of topiramate is decreased appetite. Other than that, side effects include drowsiness, sleepiness, double vision and tingling in the hands or feet. That last one, particularly if it’s going to effect my fingers, sounds annoying, but I’ll get to experience that if it happens.

Since my nurse practitioner will have to talk to my care facility’s physician before the medication can actually be started, I don’t expect this to happen till sometime next week. It’s also been decided I will start this when a trusted staff is on shift.

Now this did get me into an excited yet overloaded state yesterday evening. I mean, seriously, how can it be that someone truly understands? It baffles me but I’m so relieved.