Posted on March 22, 2022
After the Temazepam didn’t make a dent in my insomnia, my GP prescribed melatonin and finally – FINALLY – I started getting some sleep again. And in the nighttime hours. I started out at 2mg but almost straight away, I found it almost impossible to wake up in the morning so we reduced it to 1mg with the blessing of my GP.
As is always the case with posts about medication, supplements, etc, this is just my experience. Please don’t start, change, or stop taking anything without the advice and support of a medical professional.
So it definitely helped me get to sleep more quickly. I went from lying awake for hours – for most of the night – to falling asleep in less than an hour. It wasn’t always quick but it was a lot quicker than it had been (part of that could have been due to a flare up of my chronic pain though).
Almost straight away, I was struggling to wake up in the mornings. I would wake up and fall asleep again over and over; I couldn’t seem to stay awake and that meant I wasn’t getting up until late morning or early afternoon. After a couple of days, I went from 2mg to 1mg but it didn’t seem to make any difference. I mean, I appreciated being able to sleep again but suddenly I was sleeping more than twelve hours, which was just problematic in a different way.
Again, almost right away, I was finding myself increasingly sleepy in the day. That was another reason to reduce the dosage but that didn’t seem to make any difference on this either. I was back to drinking Red Bull pretty much every day – not a habit that I want to return to but I was just too tired to come up with an alternate solution and just wanted to make it through the day. My eyes were always tired and I struggled through the day, trying to do things, trying not to fall asleep. And that was with the caffeine (I’m starting to wonder if caffeine has any effect on me at all at this point). It’s hard to know whether it’s the Moclobemide, melatonin, or just the accumulated lack of sleep but I really, really don’t want to spend my whole life feeling tired and sleepy because MAOIs are the only medications that work.
It was taking me a while to get to sleep – I couldn’t get comfortable (yay, chronic pain); I couldn’t relax; I couldn’t unwind – but it was still so much better than before I started taking the melatonin. I was still getting to sleep a lot quicker than I had been. I do keep going to bed too late, which is a habit that frustrates me, but I’m trying to be better about that.
I was sleeping restlessly, waking up a lot, which wasn’t super restful. Waking up was a struggle: I’d fall asleep, wake up, fall asleep, wake up… I just couldn’t wake up. I couldn’t open my eyes or make my hands work for such a long time; it was horrible. I don’t know if that’s the melatonin or the Moclobemide but, whatever it is, I don’t like it. Getting up took a lot of effort and I usually didn’t manage it until into the afternoon.
During the day, I was physically exhausted but also really sleepy; I couldn’t keep my eyes open (and they were just so tired). I was ready to go back to bed within a couple of hours of getting up. I started consistently drinking Red Bull again, something I haven’t done since I stopped taking the Phenelzine last September. It’s not a habit that I want to start again but I don’t really know what to do: I’m so tired that I can’t figure out what the right thing to do is so I’ve just been going with it to get through the day. But even with the Red Bull, I’m very drowsy and tired.
While I’m certainly drifting off faster than I was before I started the melatonin, it hasn’t been straightforward. It often took me quite a while to get to sleep, like I had to concentrate in order to sleep (which seems somewhat counterintuitive) but then I was restless and woke up over and over. However, there were also nights when I fell asleep quickly and slept well. So I’m not sure what conclusions to draw from that.
Generally, waking up was unpleasant. I’d wake up, fall asleep, wake up, fall asleep – over and over again. It was very frustrating. I found that eating something straight away did help me stay awake but I hate it: food is absolutely not what I want when I first wake up but it’s the only thing that seems to make waking easier. Over the week, I have noticed that I’m naturally waking up earlier and earlier, which I am grateful for.
I struggled during the day though, physically exhausted and just so sleepy; it was so hard to keep my eyes open. I don’t know if the Red Bull helped at all. Socialising, even when it was enjoyable, was exhausting and I fell asleep on the sofa multiple times. That, of course, just made it harder to get to sleep when evening rolled around.
Given how much I struggled to wake up and how sleepy I was during the day, I stopped taking the melatonin, an experiment to see if it was the cause of my drowsiness, if I could sleep without it.
My sleep was better than it had been before this experiment with melatonin but it still wasn’t great. It was still taking me a couple of hours to get to sleep but I wasn’t lying awake all night, which was an improvement. Most nights, I slept restlessly and kept finding myself stuck between asleep and awake or with busy, vivid dreams.
I consistently struggled to wake up, although I discovered that eating something straight away did help. Otherwise I just kept drifting back into sleep. Waking and then getting up was just a battle, every single day. I was managing to get up earlier than I have been able to over the last few months but then I was generally sleepy within an hour of settling to whatever I was working on.
I was incredibly sleepy during the day, every day without fail. I was easily fatigued and it didn’t take much to leave me passed out on the sofa for a couple of hours. Everything just seems to take so much energy. The urge to nap was constant and my eyes kept closing; it took all of my energy just to stay awake. Even with a Redbull or two in my system, I was always drowsy. I wish I knew why the sleepiness kicks in during the day only to completely disappear at night; it’s really wearing me down. It seems clear that the MAOIs are at least the main cause of this sleepiness but if they’re the only way forward, then we need to find some way to counteract it. It just isn’t sustainable. I can’t do what I need to do like this.
Having come to the conclusion that the melatonin wasn’t the cause of my daytime sleepiness, I decided to try another experiment. Given that I still wasn’t sleeping particularly well, I thought I’d try the melatonin again, just to be sure. I started with the 1mg but that didn’t seem to be enough: I’d feel my body, particularly my legs, start going to sleep but then they’d twitch awake, horribly and painfully. That only made it harder to get to sleep, both the physical pain and the fear of it. So, thinking that that dose might not be enough, I returned to the originally prescribed dose of 2mg. It had mixed results. Some nights I slept quickly and well but some nights, I slept terribly, waking over and over and experiencing busy, stressful dreams. It’s better, I guess, than sleeping badly all of the time but it’s not as straightforward as I’d hoped it would be.
The drowsiness – and fatigue – is still a problem. I’ve got some ideas to pursue on that front but there isn’t the time to test any of them out before my trip to Nashville so, until I get back, I’m just going to have to muscle through and hope the adrenaline can plug the gaps. I’m anxious – I don’t want to miss out on anything – but I’ve also been living with this, to some extent, for years now. I’m well practiced at managing my energy, even though I don’t always listen to my experience and instincts.
So I’m not really sure how I feel about the melatonin. After five weeks, I’d hoped I’d know one way or the other whether it was helpful but I’m not sure that I do. It might have broken the sleepless loop I was in but it hasn’t proved to be reliably helpful and on the nights it isn’t helpful, it feels like it makes things worse. So I don’t know. I really don’t.
Category: adhd, chronic fatigue, depression, heds, medication, mental health, sleep, treatment Tagged: antidepressants, chronic fatigue, drowsiness, exhaustion, fatigue, hormone, hormones, insomnia, maois, melatonin, moclobemide, monoamine oxidase inhibitors, red bull, redbull, sleep, sleep cycle, sleep-wake cycle, sleepiness, supplement, tired, tiredness
Posted on March 19, 2022
TW: Mentions of self harm and suicidal thoughts.
It’s been a while since I did one of these updates and the last few months have been A LOT. An update is somewhat necessary, if only for blog cohesion. It’s all been pretty awful, hence all of my posts about medication: we’ve been desperately trying to get a handle on things. I’m not sure we have but there’s a natural point here, around medication and my upcoming trip to the US, so I figured now was probably the best time to do it…
The end of last year and beginning of this year was bad. Really, really bad. I was the most depressed I’ve ever been, self harming and suicidal. I’ve been suicidal in the past but never like this, never to this extent. It was awful but it was also kind of cozy and cotton wool-y, especially compared to what came next. I had a kind of anxiety-induced breakdown, something beyond and different to a meltdown, that just wrecked me. Like, it was so bad that I missed being suicidal. The anxiety was paralysing and the whole thing completely wrung me out. It was unbearable but it was probably the only thing that would’ve forced me onto the new medication – something I’d been resisting out of sheer exhaustion and hopelessness. But I couldn’t go on feeling like that. I was scared the medication would bury the stuff that needs dealing with and I still am but I couldn’t go on like that.
So I started taking Moclobemide but I was also taking Diazepam pretty consistently, given how bad my anxiety was. Things are better than they were – and I’m writing again, which is a good sign – but they’re still not great. I’m still struggling with a lot of stuff. I haven’t been able to go to therapy for a while now and I’m not sure when I’m going to be able to go back – that unexpected twist in the road certainly hasn’t helped. So I’m feeling kind of stuck in terms of how to move forward.
Physically, things haven’t been awesome either. My appetite hasn’t recovered much from the battering it took from the ADHD meds; I’m still not really eating but I am doing better than before so that’s something (the whole thing definitely hasn’t helped my already complicated relationship with food). And after a short break, my chronic pain is back with vengeance. It’s throughout my whole body but my arms, wrists, hands, and fingers in particular have been especially painful. I’m still waiting to hear back from the Pain Clinic. I haven’t written much about my experience with them; I guess I’ve kind of been waiting to have something to write about but so far, I haven’t received any proper support. They said they’d get back to me after their next team meeting but that was early November at the latest so I’m not exactly holding my breath. The Chronic Fatigue Service gave up on me – they literally told me my case was too complicated – and I don’t have high hopes about this experience either. I’ve been waiting for some sort of support for this pain since May 2020 and I know that the NHS have been overwhelmed but that is a really, really, really long time when you’re in pain.
My sleeping is better but still not great. The melatonin helped somewhat and I managed to wrestle my sleep cycle into something a bit more reasonable: rather than lying awake all night and then sleeping through the day, I am now at least sleeping mostly at night. But I’m incredibly tired all the time and I’m drowsy in the day again, just like I was when I was taking Phenelzine. I’ve picked up my Red Bull habit again – although not to quite the same degree (yet) – which I really never wanted to do again.
Between the sleepiness and the not feeling that much better, I’m not convinced by the Moclobemide. It’s pretty reasonable to assume – at this point – that MAOIs are the only antidepressants that help at all but as I said in my Moclobemide review, this level of better doesn’t feel like enough. I still don’t feel great; I don’t even really feel good. And I’m so sleepy, all the time. I don’t feel like it’s that much to ask for: to feel functional, to write songs, to have the capacity to feel good, to even be happy sometimes. Is that really more than I should hope for?
It’s been a long few months and it’s all left me feeling very raw. And, as excited as I am to get back to Nashville, I’m also terrified. The COVID risk aside, the whole world has been through this huge thing so how could going back not be different, feel different? It also just feels very soon to be out in the world for so much of every day when I still feel so… fragile, I guess. It’s like I’ve just started putting myself back together and I’m not ready for the Jenga tower to get toppled again, to start over. I don’t know if I have it in me. I just really hope – really, really hope – that everything goes as well as it can while I’m still getting my feet under me.
Category: about me, anxiety, covid-19 pandemic, depression, emotions, food, heds, medication, mental health, self harm, sleep, suicide Tagged: antidepressants, anxiety, anxiety disorder, asd, autism, autism spectrum disorder, autistic, autistic adult, breakdown, covid-19, depression, diazepam, disordered eating, maois, medication, mental health, mental illness, moclobemide, monoamine oxidase inhibitors, nashville, pandemic, pandemic 2020, pandemic anxiety, self harm, self injury, sleep, suicidal, suicidal thoughts, therapy, trd, treatment resistant depression, trigger, trigger warning, trip, tw
Posted on February 12, 2022
TW: Mentions of self harm and suicidal thoughts.
So, I’ve been gone for a while. After having a bad reaction to the first ADHD medication, I had another bad reaction to the second, Bupropion, as well. Everything fell apart and I was really unwell for months; I couldn’t get out of bed, let alone write. I’m still not feeling great but things are better than they were and I am starting to feel able to write again, hence this new post.
After the mess that was Xaggitin, I was hopeful (kind of – in the only way you can be when you’re feeling hopeless and suicidal) that Bupropion would be better, given that it was an antidepressant but one that’s supposed to help with ADHD. I honestly don’t know whether it was better, which is somewhat mindblowing considering how awful the Xaggitin was.
As always, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
BUPROPION – 150mg
The most pressing of the side effects was the nausea: it was overwhelming. And it went on all day, every day. It was horrendous. I was barely eating and while I can’t see it, I’ve had multiple people comment that I’ve visibly lost weight. (I also had a weird reaction to the Christmas tree in that it made the nausea even worse – it also irritated my eyes, nose, and throat, making my cough even worse, which wasn’t pleasant.)
I had consistent difficulty sleeping. I was always wide awake until very late at night (or early in the morning) and then I struggled to get up at anything approaching a reasonable time the next day – I also had a lot of very vivid, stressful dreams, which is something I’ve noticed pops up when I change medication. I was physically exhausted all the time (both therapy and hydrotherapy, for example, had me falling asleep on the sofa, which I haven’t done in months) and I was feeling very burned out and overwhelmed with nothing left emotionally as well as physically. I had a couple of almost meltdowns as a result (I think the only reason they didn’t turn into full on meltdowns was because I was so physically exhausted so I just shut down instead).
I was very depressed, feeling hopeless and having suicidal thoughts. I was also restless and had this ongoing sense of unease. It was awful but my psychiatrist strongly encouraged me to stick with it for a month to really get a feel for it, for whether it would help or not. The depression and suicidal thoughts could’ve been a hangover from the Xaggitin and the only way to know was to give it more time.
I was also having headaches, not quite at migraine level but not far off.
The nausea continued, unfortunately. It was still bad but it was a little better on some days, I think. All of the food around Christmas was pretty stressful though: I still didn’t really have any appetite but I did manage to eat a bit, although what I used to consider a normal potion made me feel very unwell.
My sleep schedule remained messed up too. I was getting to sleep at around three in the morning (regardless of any help, that being medication or the methods I’ve used in the past that have helped) and then struggling to get up the next day. There was one night where I never got to sleep and then, the night after, I slept for fourteen hours and felt well rested for the first time in longer than I can remember. I’d hoped that that would right my schedule – at least a bit – but it didn’t. I was back to struggling to sleep the night after that. And I was still having the terrifyingly vivid nightmares. I was also physically exhausted: Christmas Day and a small family thing the day after Boxing Day, in particular, absolutely wiped me out.
The anxiety and depression persisted, plus I felt very, very emotional; I was restless and uneasy and I felt very raw and lost. It was pretty overwhelming.
The headaches continued too, plus the weird response to the Christmas tree: it made me feel very nauseous and made my eyes burn horribly. I love having the Christmas tree up so that didn’t help my mood.
BUPROPION – 150mg (+ PROPRANOLOL (20mg))
I hadn’t wanted to start Bupropion and Propranolol at the same time since it would be impossible to tell if one of the two wasn’t working. So, two weeks in, I added the Propranolol. But while I’d remembered that, I’d lost track of time and forgotten that, after two weeks, I could up the Bupropion. So I was taking the half dose three days longer than I’d intended to (in which I also got my COVID booster).
The trouble sleeping continued. I was finally getting to sleep between two and five in the morning and then, of course, struggling to wake up in the morning. I was completely exhausted and finding it a real struggle to get out of bed at all, something that certainly wasn’t helped by my depression. Feeling depressed, hopeless, overwhelmed, and anxious… getting up and facing the world felt like more than I was capable of.
The nausea was still very present too and there were moments when I had to stop and sit down on the floor and just focus on not throwing up. It was very unpleasant. I couldn’t really handle food, not that I really had any appetite anyway.
I also had a headache that grew into a vicious migraine (with intensely painful light sensitivity). The COVID booster was positively pleasant in comparison. My arm was sore and heavy for a few days but that was it, symptom wise, as far as I could tell.
BUPROPION – 300mg (+ PROPRANOLOL (20mg))
I only managed five days on the full dose of Bupropion. It was clear straight away that it wasn’t agreeing with me.
If I was sleeping, I was sleeping terribly: I was getting to sleep around three at the earliest and then desperately struggling to wake up in the mornings. But between the depression and the anxiety, I found getting out of bed felt overwhelming. The depression had gotten even worse – the worst it’s ever been – and everything just felt hopeless. The self harm urges and suicidal thoughts were relentless. I felt checked out of my life and I just couldn’t engage with anything, even things that I love and things that have previously helped when my depression’s been bad. The anxiety amped up too. I was just overwhelmed, terrified that something bad was going to happen; I felt like I was constantly trying to stop myself from panicking. The nausea and lack of appetite also persisted; I was barely eating anything. But I have to confess that I didn’t really care. Food is so stressful for me that not eating was a relief.
BUPROPION – 150mg (+ PROPRANOLOL (20mg) + LORAZEPAM (2-4mg))
With things getting so bad, my Mum was calling anyone who could help us and my GP told us to go back to the half dose, adding Lorazepam to help with the overwhelming anxiety (which apparently not uncommon when taking Bupropion).
At this point, I’d basically stopped getting out of bed, only getting up to have a shower and try to eat something before going back to bed. My anxiety (including racing thoughts, which I’ve only had a handful of times) was so bad and so overwhelming that I just couldn’t engage with anything: everything made my anxiety worse. It messed with my sleep even more and I barely ate at all; just the thought of food made me incredibly nauseous. I had meltdowns and I self harmed (which didn’t actually make me feel any better) and just being up in the daylight made everything so much heavier so I stayed hidden in my darkened room. I was beyond miserable.
Halfway through that week, the Crisis Team (or Assessment and Treatment Team as I believe they’re formally called although everyone we spoke to called them the Crisis Team) came out to see me. As nice as they were, I’m not really sure what the point of it was. The guy wanted to make sure I was eating at least a bit; he wanted to know about my anxiety and depression; he wanted to know whether I was having thoughts of self harming and suicide, although he didn’t ask if I was planning on acting on those thoughts. And then he rambled a bit about me being monitored over the medication change. I’m not sure what good that would do. I’ve changed medications so many times now; I’d just be doing what I do every single time but with someone coming to see me everyday. How was that supposed to help? What was that going to achieve? They offered to refer us to one of their psychiatrists, which my Mum asked them to so so that we could find out whether, at this point, there was any point in continuing with the Bupropion or whether I should start coming off it officially. As I said, they were nice but it was a pretty frustrating and upsetting experience and I just wanted to cry. I wrote in my diary afterwards: “Oh my fucking god, I can’t keep feeling like this every day, over and over again. It just makes me want to tear my hair out and rip my skin off and scream until my throat tears.”
Over the rest of the week, I continued to sleep badly and struggle to wake up. I lay in bed all day, my brain just spinning out of control: my thoughts felt very chaotic and it was all just big, overwhelming feelings that I couldn’t make sense of. I felt like I was losing control of my mind – like I was just a spectator – and I felt like I couldn’t breathe. And I couldn’t stop crying. I was depressed, anxious (by the end of the week, I was up to 4mg of Lorazepam daily – prompted by calls to 111 and then my psychiatrist – although I was still paralysingly anxious), terrified, miserable, and exhausted: those seem to be the words I wrote down the most. Eating was an ongoing struggle, although the nausea had finally dissipated (for the most part).
After speaking to my Mum, my psychiatrist recommended I come off the Bupropion and, with my depression so bad, go back to an MAOI antidepressant since we’ve had the most success with them. I wasn’t thrilled by that plan (I’m still not wild about it) because the Phenelzine isn’t great, plus it massively limits the options for ADHD medication. But there don’t seem to be any other available options so I just went with it. With the two week wash out period, I didn’t have to make the decision straight away.
WEEK 1 (20mg Propranolol + 4mg Lorazepam)
My sleeping schedule got worse: it was taking longer and longer to get to sleep until I was eventually drifting off at around five in the morning. That, of course, meant I was waking up later. I didn’t really mind that: I didn’t really want to be awake anyway and being awake in the dark didn’t feel quite as difficult as it did in the daylight hours. I did get up each day – to shower, to try to eat – but it was a miserable experience that usually resulted in tears. I felt completely overwhelmed and just didn’t know what to do with myself but I was still restless and felt like I was constantly on the verge of a meltdown. Even though I wasn’t doing anything, I was completely exhausted, which just made the inability to get to sleep that much more frustrating.
I had periods of intense anxiety but for the most part, the depression was overwhelming and suffocating. I felt separate and disconnected from my life, and like I couldn’t get back to it. I felt completely hopeless and the suicidal thoughts continued. I was completely miserable.
WEEK 2 (20mg Propranolol + 4mg Lorazepam)
I was constantly exhausted, barely eating and my sleeping just kept getting worse, getting more screwed up and out of sync. I took sleeping pills, I tried every strategy that’s ever worked, every possible combination… but I just couldn’t get to sleep; it just got later and later until I was going to sleep at eight in the morning. It was miserable. I was miserable: I was in tears multiple times every day; I was incredibly anxious (I’m not convinced the Lorazepam was doing anything); I was deeply depressed and consistently having suicidal thoughts and thoughts about self harming (which I did act on although it didn’t make me feel any better). It was the worst I’d ever felt. Everything just felt impossible, overwhelming and hopeless and I just didn’t know how to act like that wasn’t how I felt. It was all too much and I just didn’t know what to do with myself: I couldn’t engage or connect with anything. Everything felt wrong and uncomfortable and sad.
It’s a really hard state of mind to describe so I thought I’d include some of the things I wrote in my diary during the week:
So it was a rough week after a rough few months. The wash out period is up but I still don’t know what to do. There are so many reasons why I don’t want to go back to MAOIs – messy, convoluted reasons that I don’t even know how to put into words – but there doesn’t seem to be another option. I still don’t want to take them though. I feel completely stuck.
This was several weeks ago now and as much as I didn’t want to go back to an MAOI, I had a bit of a breakdown and started taking a new antidepressant, Moclobemide. I was desperate. And, as I said, things aren’t great but they are better than they were. I still feel very conflicted about what to do around the medication and the clash between the medications for each condition but at least I am feeling clearer and not so completely overwhelmed.
Category: adhd, anxiety, depression, emotions, food, medication, meltdowns, mental health, self harm, sleep, suicide, treatment Tagged: adhd, adhd medication, anti-anxiety medication, antidepressants, anxiety, anxiety disorder, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, bupropion, depression, exhaustion, gad, generalised anxiety disorder, generalized anxiety disorder, insomnia, lorazepam, loss of appetite, maoi, medication, medication change, medication review, meltdown, meltdowns, mental health, mental illness, migraine, migraines, moclobemide, monoamine oxidase inhibitors, nausea, neurodivergent, propranolol, self harm, side effects, suicidal, suicidal thoughts, trigger warning, tw, xaggitin, xaggitin xl
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.