Posted on August 6, 2022
TW: Mentions of suicidal thoughts and negative thoughts about food.
Back in May and June of this year, I tried another MAOI antidepressant, Tranylcypromine; it actually works a bit differently to the other MAOIs I’ve tried, like Phenelzine and Moclobemide, so I was hopeful that it would be the best of those and maybe even more. This one was a tricky one to get because it’s so expensive (a month’s supply is £300 – everyone I’ve talked to about it has asked if it’s made of gold, which made me laugh because that was my exact reaction) but fortunately, I have a great psychiatrist and a great GP who made it possible. I wasn’t in a great place but I was cautiously optimistic that this one would be better.
As is always the case with posts about medication, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
WEEK 1 (10mg Once Daily)
I was still struggling to sleep, not getting to sleep until after three in the morning, and then I’d sleep into the afternoons. I struggled to get up (probably due to both physical tiredness and my bad headspace) and doing pretty much anything – my week involved a stressful dentist appointment, multiple swims and hydro sessions, a meltdown, and more – had me falling asleep on the sofa as soon as I got home. And I was tired and sleepy all day, regardless of the hour.
I was very nauseous all the time and when I actually managed food, it wasn’t satisfying at all. So eating was tough.
The depression was solid, like it was darkening the edges of my vision at all times. I was also very anxious most days and I was really struggling with my concentration.
The chronic pain that had flared up wasn’t great but it was getting better. It was less than it had been and for that I was grateful.
My sleep continued to be a struggle. During the day, I was tired and sleepy (and fell asleep on the sofa several times despite how wonky my sleep schedule was) but then I just couldn’t sleep at night. My brain kept going to scary places and nothing that’s helped in the past worked. I usually fell asleep sometime between three and five am and then I’d struggle awake in the early afternoon. I couldn’t shift it, no matter how hard I tried or what I did.
I was too depressed to do anything. I was completely paralysed by it. I was depressed and anxious and restless. I was struggling to concentrate. I felt overwhelmed and lost and hopeless. I was having suicidal thoughts again. I was desperate to distract myself from my thoughts. I nearly had another meltdown. I felt like something vital in me had been broken. I still do.
Sleep remained the bane of my existence. I wasn’t getting to sleep until around five in the morning and one night I didn’t sleep at all (that was a particularly miserable day). I’d manage to wake up around three or so but feel sleepy straight away. And I was tired all day everyday but then I’d go to bed and just lie there, so anxious that my chest felt tight, so anxious that I couldn’t breathe; I just couldn’t calm my brain down.
I was still very depressed. Nothing helped, nothing made me less depressed, or made me feel better. It was so bad that I just couldn’t engage with anything; I felt trapped with my thoughts and it was horrible. And feeling like that, I didn’t know what to do with myself. I just felt like crying and screaming. I was also really anxious. And I just felt hopeless, my suicidal thoughts a consistent buzz in the background. My OCD also became more difficult to manage; the compulsions felt even more suffocating than usual.
Food was also really stressing me out. I wasn’t enjoying it and it doesn’t seem to give me any energy, which – in my head – meant that I was just gaining weight and the thought of that made me very anxious. I’ve never talked to anyone about my anxieties around food and body image because it always feels like there are more pressing problems. Sometimes it’s easy to ignore and sometimes it’s all I can think about and this was the latter.
WEEK 4 (+ Zolpidem)
After so much disrupted sleep, my GP prescribed me Zolpidem to hopefully get a handle on it. As a result, my sleep cycle became very erratic: some nights I barely slept at all, some nights I slept for more than thirteen hours, some nights I slept at a normal time, some nights it made no sense at all. But regardless of that, I was still tired and drained and sleepy during the day.
I was still feeling awful. I was depressed and anxious with almost constant suicidal thoughts. I felt useless and pathetic and I couldn’t stop crying. I just completely overwhelmed and utterly hopeless. Even the most basic engagement with the world was excruciating but hiding away hurt too. I ended up retreating from everyone, both in real life and over social media. As I said, I just felt completely overwhelmed and paralysed.
After a rough session with my psychiatrist, I came off the Tranylcypromine. That was fairly easy, all things considered, and I did feel better. Well, ‘less terrible’ is probably more accurate: I was less sleepy, which made things easier, and I had periods where it all felt a little less oppressive. I also got better at blocking the world out, although I’m not sure that’s done me in favours long term.
As far as my psychiatrist is concerned, my options now are to either start taking Phenelzine again – the one antidepressant that has helped – or to look at other options. My anxiety around going back to Phenelzine is that I will just end up here again, when the side effects become too much to handle. So it feels like searching for another option is inevitable (but then I’m scared that another option won’t work and I should just accept what the Phenelzine can do but… And round and round we go). I have been referred to the Treatment Resistant Depression clinic (something I had no idea existed) to discuss what those other options are and we are also talking to a private clinic, trying to get as much information as possible. But, as hard as I try, I don’t know what to do next. I don’t know what the right choice is and no one else seems to know either.
Category: anxiety, body image, chronic fatigue, chronic pain, depression, emotions, food, medication, mental health, sleep, treatment Tagged: antidepressants, anxiety, appetite, chronic fatigue, chronic pain, concentration, depressed, depression, fatigue, food, insomnia, maoi, maois, medication, medication review, nausea, side effect, side effects, sleep, sleeplessness, suicidal thoughts, tranylcypromine
Posted on December 18, 2021
TW: Mentions of self harm and suicidal thoughts.
And ten months after being diagnosed, I finally started taking medication for my ADHD. If you’ve been following this blog, you may remember that I was diagnosed back in January and, due to the disruption it would’ve caused at a crucial point in my Masters, I had to wait to come off my antidepressant (Phenelzine is contraindicated with stimulant medication for ADHD) and then start the ADHD meds. But, as of mid November, I could start taking Xaggitin XL (definitely my most strangely named medication so far); I’d researched it and read multiple accounts that it hadn’t affected creativity and my ADHD specialist didn’t have a problem with trying it when I suggested it. And as I always do, I kept notes; it helps me to remember what each medication was like and hopefully it can be helpful to anyone who might be taking or about to take the same medication. But, as always, it’s important to state that this is a medication I was prescribed by my doctor, according to a plan that we decided on together. This is just my experience; please speak to your doctor if you have any questions about your medication.
WEEK 1 (18mg)
I started to feel the side effects straight away. From the second day, I was experiencing overwhelming, almost constant nausea. It got worse if I rushed around or even stood up for too long and I’d end up curled up on the floor, focussing on just breathing until it passed (by the end of the week, I had figured out and was getting better at avoiding the things that made it worse). That combined with a massive loss of appetite meant I really wasn’t eating much, although most days I managed to force at least one meal down. I also started having trouble with my sleep. It would take me hours to get to sleep – usually between two and four am – which meant that my sleep schedule started to shift. It was so hard to wake up in the morning and that just meant I ended up going to sleep later and as hard as I tried, I couldn’t keep my routine from moving several hours around the clock.
My mental health also took a hit, which wasn’t entirely surprising since I no longer had the Phenelzine in my system. I started to feel overwhelmed and fragile. My anxiety increased and I even had a panic attack, not something I usually struggle with. My depression started to creep back in too; it wasn’t too bad but it was there.
The cough was still hanging around and I had multiple migraines (some that I managed to cut short with medication and some that took me out of commission completely) but both of those could’ve been left over from coming off the Phenelzine, having been big problems throughout that process. I’m not sure.
The nausea, the lack of appetite, and the trouble sleeping persisted. As did the cough (I’ve taken several COVID tests since it started and they’ve all come back negative). I also felt even more scattered than usual: I couldn’t focus on whatever I tried to do and I started losing my train of thought mid-thought, which was very stressful. I felt completely unable to do anything.
By the end of the week, it felt like everything was starting to fall apart. I was really struggling to write. What I’d thought was just a few bad days (unpleasant but not unheard of) turned into an awful week; the internal flow that makes writing so easy and so calming was suddenly absent and even the forms of writing that have always felt easy (regardless of whatever’s going on with my mental health) felt awkward and forced. My mental health had started to get really bad – my anxiety and depression had gotten a lot worse – and that just made it worse. And on top of that, I had started to have suicidal thoughts again, which I haven’t had – consistently, at least – for years.
WEEK 3 (36mg)
The nausea and lack of appetite were still really bad so I wasn’t eating much. I tried but it was really hard. Sleeping was also difficult. I was wide awake all of the time – like I was highly caffeinated – even late into the night, which didn’t help in my attempts to get my sleep schedule back to normal. Most of my nights were disturbed one way or another and I had one night where I never went to sleep at all; I didn’t even start to feel sleepy until I’d been awake for over thirty six hours. It feels very strange considering that even three months ago I could barely stay awake, even with two Red Bulls in my system; talk about from one extreme to another…
I was still struggling with concentration and my mental state was only declining. I was consistently depressed – feeling hopeless and alone – and there were days where I struggled to get up, not just because of the nausea but because everything felt so overwhelming and difficult. The suicidal thoughts continued and I did self harm once. My anxiety also got worse and I had another panic attack.
The nausea got even worse, lasting all day and making it even more difficult to eat (or do anything at all, to be honest). And having no appetite didn’t help with that. My sleeping was still awful too, despite how physically exhausted I was starting to feel after so many nights of poor sleep. The cough and difficulty concentrating continued and I had a couple of days that were monopolised by migraines (or maybe one migraine that never quite went away).
My mental health deteriorated further. I was incredibly anxious and my depression just got worse. I’m pretty sure it’s the worst my depression has ever been, based on what’s been going on in my head. The suicidal thoughts continued but they are different to what I’ve experienced in the past. It’s been a lot. I can’t know for sure whether this is down to the lack of antidepressant in my system, a reaction to the ADHD meds, or both.
That last week was a big week, which was unfortunate considering how awful I was feeling; it made it hard to enjoy or get the most out of those events – going back to therapy after several months away, my Mum’s birthday, and a visit from a friend for both work and fun – and then I felt physically worse afterwards, physical exhaustion and pain in addition to the ongoing side effects of the medication.
So it’s been a rough month. The nausea and trouble sleeping has been awful but the anxiety, depression, and suicidal thoughts have been worse by far. And losing the ability to write has been unbearable. After speaking with both my psychiatrist and ADHD specialist, it’s been decided that I’m going to stop taking the Xaggitin and try Bupropion, which should – hopefully – help my depression as well as my ADHD. So that’s another month gone and the waiting game begins again.
Category: adhd, anxiety, depression, emotions, food, medication, mental health, self harm, suicide, treatment Tagged: adhd, adhd inattentive type, adhd medication, anxiety, attention deficit hyperactivity disorder, concentration, cough, depression, focus, inattentive adhd, inattentive type, insomnia, loss of appetite, medication, mental health, migraine, nausea, panic attack, side effects, sleep, suicidal, suicidal thoughts, trigger warning, tw, xaggitin, xaggitin xl
Posted on September 19, 2021
The time has come to sum up the final semester of my Masters. I am done. That’s sort of unbelievable. Given everything that’s happened since I started the course in September 2019, the end of the Masters always felt so far away and although I have lots of plans, I do feel a bit lost now that all of the work is done. Maybe it’s because I haven’t received my final grade or because I haven’t actually graduated yet; maybe once those things happen, the experience will feel a bit more… finished. It was always going to be weird – I’ve been going to this uni on and off for the last seven years – but knowing something and actually feeling it are so different.
So, here is my final semester review.
The final semester of my Masters course involves a largely independent project called the Major Repertoire Project and as long as you’re developing your songwriting skills and knowledge in some way, you can pretty much do whatever you want. People have done projects exploring identity, exploring their heritage, writing song cycles or musicals, digging deeper into their own songwriting and pursuing an artist project like an album, experimenting with newer applications of songwriting (such as in various therapies), and so on. It’s a fascinating module because everyone ends up doing something so different and so interesting. And after a spending a year or two focussing on their craft, the songwriting is so incredible; the final works that I’ve heard are amazing. It would probably take a month but I would happily listen through everyone’s projects.
For my project, I chose to explore my experiences as an autistic woman through songwriting, attempting to translate those experiences both through the lyrics and storytelling and the execution of the song, from the structure to the arrangement to the production and so on. I wanted to write songs that autistic individuals would hopefully relate to and that neurotypical individuals would hopefully gain some insight from. But while the overall goal was to create a body of work, a large part of the project involved researching our chosen area – Autism, in my case – responding to the research (sometimes that was through practice and sometimes it inspired specific songs), and reflecting on my songwriting process and how it was evolving during the project.
The module officially began in the second week of May but I’d already started working on it: I’ve been thinking about this project ever since I applied for the Masters so I was super excited to finally start doing it. But I’d barely begun when I started getting debilitating migraines that lasted for days at a time and resulted in several ambulance visits because the pain was so bad. We eventually traced the source back to one of my teeth: the emergency dentist thought the nerve was dying and diagnosed an abscess. I was top priority for an extraction and given antibiotics (which I had to have a second round of when it flared up again midway through the semester). Fortunately my university granted me an extension – giving me back the time that I’d lost – but it was a flexible extension in case I suddenly got pulled in to have the tooth taken out and needed some recovery time. Due to the long waiting list (and bear in mind that this was the waiting list for emergencies), I still haven’t had the tooth taken out and while the antibiotics and some good painkillers have prevented any more similar episodes, I’ve still been dealing with some tooth pain and migraines. So that hasn’t been ideal.
We only had four classes over the semester but since everyone was researching something different, they weren’t exactly classes. They were more group discussions where we’d talk about how our research and writing was going, whether we were struggling in a particular area, what we could do if we felt like we weren’t fulfilling one or more of the overall objectives, and so on. We had individual supervisors for the more specific guidance and problems whereas this was more general and we were able to share with each other what we’d found helpful, etc. These classes were online but we were finally able to come into the building. With most of the other courses finished for the summer, it was pretty empty and I felt safe there; you had to test negative just to get in the building and with no one around (pre-COVID, it could be a bit of a crush at times), my pandemic anxiety was a lot lower than it usually is when I’m out in the world. Being there after so much time and getting to see some of my friends again made me positively giddy! And there were some friends that I was actually meeting in person for the first time, which was just wonderful! I’m really going to miss it; I mean, I’ll pop in now and then for events and stuff but I’m really going to miss it being part of my day-to-day, week-to-week life.
Anyway. My supervisor was truly awesome. We had fortnightly and then weekly sessions and she was fantastic, not only with the academic stuff but with helping me to manage my anxiety, the things that tripped up my neurodivergent brain, and so on. And while we worked together well, we also had a lot of fun: we went on some epic tangents and there were multiple conversations that we had to mentally bookmark for later in order to actually get our work done. We got on really well and our sessions were always fun and thought-provoking, as well as helpful. I hope that this isn’t the last time we get to work together.
I obviously know a lot about Autism already so, after finding sources for that information, I started writing songs about my experiences and researching Autism further. Having the foundation of knowledge that I did, I think allowed me to research both more deeply and down different avenues since I didn’t have to spend so much time on the basic knowledge. And some of that research, from academic papers to anecdotal stories to art made by autistic individuals, sparked some really interesting song ideas (for example, I ended up writing a love song after watching Love on the Spectrum, which I found both upsetting and deeply depressing as an autistic person).
I don’t want to give too much away about the songs because I hope to release them but, over the semester, I wrote eighteen songs with a handful more that still need finishing. For the most part, I wrote alone – first because it was more convenient and then because I felt like my experiences were conveyed with more clarity that way – but I did work with a few different people, when I was struggling with a concept for example. I wrote with a couple of my friends – Richard and Luce (known as LUCE) – but I also wrote with new people that I’ve met during my time on the Masters – Luke (known as leadmetoland), Phill Vidler, and Katherine Moynihan – which was fun and exciting. It was nice to do both: I love cowriting and the back and forth of ideas but doing so much writing by myself really restored my confidence; I’ve spent so much time cowriting over the last two years and really not that much solo writing so I was nervous when I started to write alone again but after a while, it started to feel really good and that was really exciting.
But while I didn’t manage to write with Richard as much as I’d originally hoped to, we had many production sessions, mostly over Zoom. While I’d never considered the production unimportant, the project evolved to a place where the production was just as key to the representation of my autistic experiences and the emotions attached to them as the lyrics conveying the story or message. So the two of us spent a lot of time working on every little detail. While I’ve always been involved in the production choices of my songs, I’ve also always been aware that Richard knows a hell of alot more than me so I was happy to defer to his judgement. But with this project, for the first time really, I was taking the lead on production decisions – on occasion, I had the whole arrangement and production planned out before the session. But I felt more like a producer than I ever have: I was coming up with ideas that actually worked from idea to execution; I was able to pick out specific instrument, arrangement, and effect details in a way I haven’t been able to do up to now; and so on. Along with the songs themselves, that’s something I’d really proud of. I really feel like I grew as a musician and as a producer.
I absolutely loved working on my project. To be researching and writing songs about something I’m so passionate about was just so creatively invigorating. That’s not to say it wasn’t hard though. There were, of course, periods of doubt, insecurity, and anxiety over the academic elements and whether I’d be able to do as good a job as I desperately wanted to. Plus, some of the experiences I was digging into were pretty raw and writing those songs did get difficult, especially since I was suddenly doing the project without the support of my therapist, something I’d put in place to help me manage that. But apart from one bad bout of depression, my mental health was – somehow – reasonably stable (apart from my day-to-day, ongoing anxiety). As I said in my previous post, I think it was the constant creating (and creating things that I’m really proud of) that did it, that kept everything on a reasonably even keel.
Having said that, my chronic pain was almost constant, worse than it’s ever been. There were periods where my knee, for example, was so painful that I could barely walk and my back so painful that I could barely move. My Mum (once a massage therapist) said that it felt like I was storing rocks in my muscles. It certainly felt like they were made of concrete. Maybe it was my anxiety around the project, I don’t know, but the pain was keeping me up at night. I also struggled on and off with my hands and wrists, presumably from all of the typing, piano, and guitar playing I was doing. God, my various health issues are like freaking buses sometimes. I’m still waiting for physiotherapy and hydrotherapy, have been for months. I’ve just started with the Pain Clinic but one appointment was never going to change anything before the Masters ended. So all I had were various painkillers that were only sporadically helpful.
But my biggest ongoing obstacle was my difficulty concentrating, which I’m assuming is due to my (still untreated) ADHD. Staying focussed on my work was very difficult; I exhausted all of my energy trying. It felt like my concentration was so delicate that the smallest distraction would shatter it and then there was no way to know when it would come back; I felt like I was clinging onto it by my fingertips. So I couldn’t stop (really not healthy, I know). I couldn’t waste a second of it. That was super stressful and I often ended up sitting at my computer for hours and hours; there were multiple fourteen hour days, some successful, some not. People kept telling me to at least take a day off now and then but I just couldn’t. I was too scared of losing my concentration when my hold on it felt so tenuous.
During the semester, I also had a few other commitments; it was awkward timing but they were all great opportunities:
In the last month, my approach reached a new level of intensity. I was working constantly, quickly when my concentration was good and agonisingly slowly when it was bad. But I didn’t stop. I even worked while I ate. I know that’s not a healthy way of doing things but I was just so terrified of getting a grade I wasn’t happy with, that made me feel like I was letting everyone down, myself included. If I wasn’t working, I felt guilty so I just kept working.
Finally it came time to try and distill all my work down to the most important points for the final presentation. My god, that was hard. Months of research, almost twenty songs, and a lot of reflection on my creative process all into an hour… Or, as I said, the most important points. But figuring what those important points were was a real struggle. Throughout the whole Masters, I felt like the module objectives were designed to trip me up – not me specifically, of course, but anyone reading them. Reading them felt like trying to interpret another language that you barely understand so I felt like I was just waiting to discover that I had it all wrong. Maybe it was my autistic brain, I don’t know. My supervisor was great regarding this anxiety but two years of feeling that way made it a hard feeling to exorcise. So I just did what I know how to do and worked through it, hoping it would be enough. And on the 6th September, I had my final assessment. Two tutors watched my presentation and then, after a brief discussion, they asked me a couple of questions, both of which were pretty straightforward to answer. And that was it. The project and the semester was over.
According to the usual rules, the results will be released in twenty working days, although I don’t know if that will apply given that my assessment was so much later than everyone else’s and they all received their results the day after I presented. So I’m just waiting to hear. I’m trying not to stress about my grade but, as I said in my previous post, I’m finding it hard. I’ve been working relentlessly – with so many obstacles to navigate – and the idea that that still wasn’t enough to get the Distinction I want so badly does upset me. I mean, I’d get over it in time but, yeah, it would be distressing. I just really hate the idea of thinking, “I could’ve gotten a distinction if I wasn’t autistic or had ADHD, etc.” I know that that’s not a healthy way to think but the standards and expectations I have for myself are somewhat warped, something that I think is due to the late ASD diagnosis and the clash between twenty-ish years with neurotypical standards and then having to adjust those expectations in accordance with what I now know is a neurodivergent brain. It’s a mess basically. But I’m waiting for the results – they should be out on the 6th October – and hoping desperately that it went as well as I hope it did.
While the ‘project-for-assessment’ is over, I definitely want to keep working on the songs, write some more on various elements of my autistic experience that I just didn’t manage in the timeframe, and then, hopefully, release it in some form. That’s the dream. I’m so proud of so many of these songs and I really, really want people to hear them and hopefully find strength or comfort in them. We’ll have to see because these projects are just so expensive to put together, from the production work to making music videos to all of the marketing.
And while this is a topic for another post, it should be acknowledged that the semester ended on a very sad note. I found out the morning after my presentation that my Granny had died. Between that news and an intense semester’s worth of work and my brain is just at overload. I can’t tell if I’m not feeling anything or feeling everything. I don’t really want to get too deeply into all of this, partly because I’m not ready and partly because, if only on my blog, I want to keep this semester and this project separate. I really just wanted to mention it in the context of all the emotions I’m dealing (or maybe not dealing) with right now.
So that was the final semester. But there’s still a couple more chapters in this story, so to speak. Graduation will hopefully go ahead as planned – in person – in November and then who knows? I guess we’ll have to wait and see.
My apologies if this post is a bit all over the place: everything’s really hitting me and I’m just exhausted but I wanted to get this out while it’s still fresh.
Category: adhd, anxiety, autism, covid-19 pandemic, death, emotions, family, heds, meltdowns, mental health, music, research, sleep, therapy, university, writing Tagged: adhd, adhd inattentive type, anxiety, anxiety disorder, asd, assessment, attention deficit hyperactivity disorder, autism, autism awareness, autism in women, autism spectrum disorder, autistic, autistic adult, autistic student, chronic pain, classes, collaboration, concentration, conference, coproducer, covid test, covid-19, cowriting, deadline, death, dentist, depression, ehlers danlos syndrome, emotions, exhaustion, extenuating circumstances, final assessment, final presentation, final project, focus, friend, friends, gad, generalised anxiety disorder, grades, graduate, graduation, grandmother, grandparent, granny, grief, heds, hydrotherapy, hydrotherapy referral, hypermobile ehlers danlos syndrome, inattentive type, loss, major repertoire project, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, mental health, mental illness, migraine, migraines, musicology, musicology conference, neurodivergent, neurodiversity, online classes, pain, pandemic, pandemic 2020, pandemic anxiety, part time masters student, physiotherapy, presentation, producer, production, research, research conference, research project, self worth, singersongwriter, songwriter, songwriting, songwriting competition, songwriting process, songwriting project, special needs dentist, specialist dentist, tooth extraction, tooth pain, trd, treatment resistant depression, university
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.