Finding HopeGoodbye Moclobemide
Posted on June 11, 2022
TW: Mentions of suicidal thoughts.
After a couple of months of Moclobemide, it became increasingly clear that it wasn’t really working. It was better than nothing but it wasn’t good enough; I was having less bad days than I’d been having previously but I wasn’t having many good days. I don’t expect constant happiness – I know that that’s not a realistic dream – but I have to believe it’s better than this. But, in order to try something new, I had to get off the Moclobemide first.
I was taking 300mg twice daily before I began to reduce the Moclobemide and I came off it fast. As always, this was a process I discussed with my psychiatrist and we made all of the decisions together, dependent on my medical history and our joint understanding of my reactions to these kinds of medications. This is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
150mg Twice Daily (+ 20mg Propranolol Twice Daily)
The first phase of the reduction was a little over a week and I didn’t feel particularly different. I was still feeling depressed and hopeless and miserable; I was so incredibly anxious. I didn’t want to be around people: I just felt so overwhelmed and oversensitive. I was feeling pretty unmoored and lost but on the worst days I felt pathetic and unaccomplished and useless. It was awful. Plus, it was a pretty hard week: although I had one really good hangout with a friend, I also had two quite upsetting medical appointments and a migraine that lasted several days.
Sleep-wise, it was still a struggle – as it has been for months. Getting to sleep was frustrating; sometimes it took hours, even on the few occasions that I took sleeping pills (I haven’t found them helpful since I tried ADHD medications back in November last year, which have thoroughly screwed up my sleep). The longer my difficulty with sleeping goes on, the more anxiety I have around it, which definitely isn’t helping. When I finally did sleep, I slept badly with the vivid, stressful dreams that I’ve come to associate with the changing of medications. I’d sleep late – into the afternoon – but even then, when I had managed to get up, I was still tired and sleepy, actually falling asleep on the sofa during the day several times.
I was craving food – particularly salty foods – but nothing satisfied the craving, which was incredibly frustrating.
It’s probably worth noting that I was in the middle of a pain flare up, with the pain mainly in my arms around the elbow. It was pretty bad, worse than the chronic pain has been for a while. It was especially bad in the mornings and was part of why I struggled to get up once I finally managed to wake up. It was so bad one day that I had to cancel my hydrotherapy session because just the thought of washing my hair in the shower had me near tears. Fortunately, it did start to get better by the end of the first phase, much to my relief.
150mg Once Daily (+ 20mg Propranolol Twice Daily)
The second phase of reducing the Moclobemide lasted ten days. It was a hard week: I was very depressed (and the suicidal thoughts were back) and I was easily overwhelmed and upset. It felt like my brain just wouldn’t shut up and kept magnifying all of the most distressing or anxiety-provoking thoughts I had; I was doing my best to keep myself distracted by mundane stuff as much as possible but I wasn’t always successful. As I said, it was a really hard week.
It was still taking me hours to get to sleep, even on the nights I was falling asleep on the sofa. Most nights, I slept badly and I had more of the same vivid, stressful dreams (and nightmares) before struggling to wake up, no earlier than eleven. I was sleepy within an hour of waking and Red Bull didn’t seem to help. I was so tired and so sleepy during the day; I fell asleep on the sofa in the day several times during those ten days. I was so tired all the time that I struggled to get anything done.
I was still craving the sensation of eating – especially salty foods, as I said – but again, food just wasn’t satisfying or filling in any way. I’ve got it under control for the most part – I’m getting better at resisting the urges and eating according to what I should be eating and not what I randomly want to eat which I then get no pleasure out of anyway – but it’s very frustrating. I’m also talking to a nutritionist about the specific salt craving and she’s sent off for blood tests to determine whether I have a vitamin or mineral deficiency that needs attending to.
The chronic pain got bad again after it’s momentary dip. It was so bad that it was repeatedly waking me up in the night and washing and drying my hair was an exhausting experience. I had several really bad pain days that made it a struggle to concentrate, to do anything. I also had a several horrible migraines that took me out of commission for a couple of days each, which was very unpleasant. They have been worse though so I’m grateful for that.
Washout (+ 20mg Propranolol Twice Daily)
The one day washout period was awful. I was deeply depressed with suicidal thoughts; I was barely functional. Fortunately, it was just one day without medication rather than the usual two weeks. That’s always the worst part of changing medications for me so I’m grateful that it was so short this time.
So coming off the Moclobemide wasn’t fun but it wasn’t as terrible as it could have been either. I’ve definitely had worse. I’m just glad it’s over and now I’m onto the next medication, which will hopefully be better. It’s hard to stay hopeful when I just seem to be finding medications that don’t work but even when I do feel hopeless, I honestly don’t know what else to do. So I just keep going.
[I just thought I’d add that, a few days after this, the chronic pain faded and I started to feel a lot better. So that was very good news.]
Mental Health Awareness Week 2022
Posted on May 14, 2022
I have to admit that I often struggle with Mental Health Awareness Week, particularly the flooding of social media with “it’s okay not to be okay” and “reach out to someone if you need help”; it makes me want to scream in frustration because we are so far past that. If we’re going to create better support for mental health, we need more than that. This year, the theme is loneliness, which is an apt one, two years and change into this pandemic. I’m certainly seeing a lot of loneliness around at the moment: those with mental health issues, disabled individuals, people who are still shielding and feeling abandoned by society because of the dropped mandates… I can’t imagine what it’s like to be in or from Ukraine right now…
All of these situations need to be talked about and since the Mental Health Foundation is encouraging everyone to share their experiences with loneliness for Mental Health Awareness Week, I thought I’d write about my experience, as a disabled person with mental health issues.
This is something I find kind of hard to talk about. I guess talking about it – and writing about it – makes me feel a little guilty because I’m not alone. I know I’m not alone. I have a great family and some really wonderful friends who have been there for me through some really tough stuff. They try so hard to make sure that I don’t feel alone. Fortunately, we – as people – don’t need to understand each other’s experiences point for point to find friendship and create those important, supportive bonds: I have a friend who has experienced very different trauma to me but there have been a lot of similarities throughout both of our journeys that have made it possible for us to relate to each other. I’m grateful for that, more than I can say.
But it’s also true that I do, often and increasingly, feel alone, feel lonely. And I think that that’s because no one – no one I’ve found at least – really understands what it’s like to be in my head, in my body, in my life, dealing with the problems that I have and the ripple effect that they can create. I’ve had multiple doctors and medical services simply stop helping me (or refuse to help me at all) because my case is “too complicated.” These are the professionals – the people who are supposed to really know and understand this stuff – and even they don’t know what to do with me (and those abandonments, plus other abandonments in my life, have left me with a lot of issues and fears that I have to work on every day). I think the issue is compounded by the fact that I have multiple diagnoses so, even though I may fit into the autistic community, I still don’t feel like I fit in because I also have OCD and BPD and so on; I can’t imagine there are many people who fit into the same community as me when the criteria is so narrow. I’m also not entirely convinced by the idea of community based on diagnosis either, to be honest, especially when the diagnosis covers such a range of symptoms, behaviours, and experiences, like Autism Spectrum Disorder. Anyway, my point is that I don’t feel like I fit in, even with the people that, on paper, I would likely get along with.
As I said, I’m not alone. Even though I’ve never felt like I quite fitted in, I have some great friends and friends from all areas of my life: school, sixth form, uni, Masters, as well as stuff outside education… But I can’t always keep up with my friends, with my peers, and I can’t always do the things I wish I could and I find that so hard. I always end up feeling like there’s a gap between me and everyone else and it’s lonely. Not being able to physically keep up with those around me means that I often feel left out – even if that’s nobody’s intention. And there’s a level of embarrassment and shame about being the one who can never keep up, the one who is always asking people to wait, always having to double check or change or cancel plans. I don’t know where that comes from – I know my friends would never want me to feel like that. But still, it’s there. It widens the gap and it makes that loneliness worse.
The older I get, the more I notice it – the gap. While I spend my time trying different medications, going to appointments for my physical and mental health, and resting after doing what I can manage to do, a lot of my friends are pursuing PhDs, establishing careers, living independently, and building lasting relationships. Our life experiences are just so different. And the longer it goes on, the bigger the disconnect feels. It just feels like the future is full of loneliness and I don’t know what to do with that.
I know this is kind of a depressing post. It’s a depressing truth, although it might have come out differently if I weren’t coming off my antidepressants; if I were in a better place mentally, I might have a more hopeful outlook. I don’t know.
I don’t think it’s a bad theme – loneliness can have a devastating impact on a person’s mental health – but the Mental Health Foundation’s website says that they want to “shatter the stigma around loneliness” and while I can’t say that there’s no stigma associated with loneliness, I can think of so many things that might have more impact as a theme, might make more of a difference, like access to mental health support or the impact of social media or… I don’t know, something more specific than loneliness or nature (last year’s theme). (I talked about this more in my Mass Observation Day post.) As I said at the beginning of this post, I find Mental Health Awareness Week difficult because I so often feel like the information being circulated is somewhat obvious, that we could – and should – be going deeper. I guess it all just feels a bit surface level but I don’t know how that changes, if anyone else even feels this way. It just doesn’t feel like enough. It’s one week a year and it doesn’t feel like enough.
A Moment of Modafinil
Posted on April 23, 2022
TW: Mentions of suicidal thoughts.
In hindsight, I’m not sure this was the best moment to try out a medication that’s supposed to help you stay awake, given that it was going up against jet lag, lack of sleep, exhaustion, and the general sleepiness caused by my antidepressants. But I was desperate to feel something other than drowsy and trying out the Modafinil was the only option to hand. So, for a week, I took it twice daily – per the instructions of my prescription – and I thought I’d describe the experience, just in case it might be useful to somebody.
For most of the week, I took the 8am pill and then went straight back to sleep, only waking up again to take the 12pm pill. I was just so tired; I couldn’t wake up, no matter how hard I tried. I did manage to get up earlier on a couple of the days but regardless I only felt actually awake for a couple of hours before I started feeling sleepy again. I was constantly exhausted and fell asleep, sometimes multiple times in a day, regardless of how hard I tried to stay awake. Red Bull didn’t seem to help much. The first night, I never went to sleep at all – despite how tired I was – but after that it was all I could do to stay awake for more than a couple of hours at a time.
I haven’t had much appetite since taking the ADHD medications but I was suddenly very nauseous again with absolutely no interest in food. I have to say, it’s an improvement on the medications that make my want to eat constantly but it’s still not pleasant.
My mental health took a hit too. I was very anxious but there were multiple external factors to consider so I tried to tough it out but it just kept getting worse. Within a few days, I was feeling incredibly overwhelmed and fragile and then, on top of that, I started to feel more and more depressed. By the end of the week, I was having suicidal thoughts again. I stopped taking them at that point. It said that, if it causes depression (or perhaps made my existing depression worse, I don’t know), to stop and talk to a doctor and maybe I should’ve waited to stop until I could talk to my doctor but it was the long weekend and I just couldn’t face feeling like that any longer. So I stopped taking them and sent my doctor an email about it. I’m hoping for a proper appointment with him soon.
I was only taking them for a week but they didn’t seem to have any positive affect at all; I was still employing extra strategies etc to try and stay awake, something I would’ve hoped I wouldn’t have to do with the Modafinil. Having said that, I was only taking 100mg and I’ve read that most people need to take 200mg to feel the effects but I’m worried that taking a higher dose would make my depression even worse and that’s not something I can be okay with.
For several days after, I was sleeping long nights and most of the day; I was probably sleeping somewhere between sixteen and eighteen hours out of every twenty four. I’ve emerged from that at this point but I’m still incredibly sleepy. The quest for a non-drowsy life continues.
Finding Hope 