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.
Category: anxiety, chronic fatigue, depression, emotions, food, medication, mental health, sleep, suicide, treatment Tagged: anxiety, depressed, depression, drowsiness, insomnia, lack of appetite, loss of appetite, medication, medication review, medication side effects, modafinil, nausea, side effects, sleep, sleepiness, suicidal ideation, suicidal thoughts
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 12, 2022
TW: Mentions of self harm and suicidal thoughts.
In the last week of January, my psychiatrist told me to stop taking the Bupropion since it was so obviously having such a detrimental effect. In theory, after the wash out period was complete, I’d start taking a new antidepressant, Moclobemide. It’s an MAOI, like Phenelzine (the antidepressant that I’ve ever had the best response to – the only one I’ve had a halfway decent response to), so my psychiatrist thought it was the best option. But I was so depressed that I just couldn’t take it: knowing how these medications affect me, I just didn’t feel emotionally capable to handle the change.
But then, after a hellish few days and some kind of breakdown, I started taking Moclobemide. At that point, it was self preservation: I didn’t want to but I knew that I couldn’t keep feeling that awful – or worse – because something terrible was going to happen if something didn’t change.
This change was somewhat complicated by the fact that I was taking other medications at the same time. I was taking a lot of Diazepam with my anxiety so bad and I was also taking 20mg of Propranolol (recommended for anxiety and POTS – which was diagnosed by a cardiologist after a first round of tests – although I’m not sure it’s doing anything for either).
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 (150mg twice daily)
The first week was bad. I was completely overwhelmed by my anxiety and needed constant Diazepam to be even vaguely functional, just to get out of bed. I was very depressed, feeling exhausted and hopeless and worn down. I was still having thoughts about self harm and suicide although not as much as I had been but I just felt utterly overwhelmed, by everything the world wants from me. Life just felt like too much.
I was still struggling to fall asleep (there was one night when I was still awake at seven thirty am). My sleep schedule was completely fucked up; I was almost nocturnal. And even then, I was falling asleep in the day, regardless of how hard I tried not to. As I said, it was a whole mess. I was exhausted all of the time.
My struggles with food continued too. I could barely eat and on the rare occasion where I did feel able to eat, nothing appealed – at all – or satisfied the feeling. But between my mental health and my sleep issues, food felt like the least of my problems.
I also spent more than half the week with at least a low level migraine, which wasn’t exactly pleasant.
The second week was also pretty tough, although in a few different ways.
I was still feeling very anxious – the Diazepam was only doing so much – and my depression was still very present. I just couldn’t engage. I was miserable. I felt very overwhelmed; life just felt like it was too much.
At the beginning of the second week, I started taking Temazepam – prescribed by my GP – to help with my sleep. It gave me a couple of good nights but after that it didn’t seem to do much. Most nights, I was still awake for hours and struggling up in the afternoons; waking up was miserable. I was exhausted and sleepy and kept falling asleep in the day, despite drinking Red Bull, something I haven’t felt I needed in ages.
I did have one pretty intense day: despite only getting about three hours sleep, I was up early and writing a song from start to finish – something I haven’t been able to do in months. It’s usually a sign of how good or bad my mental health is: things are getting bad if I can’t write. I’m not jumping for joy just yet but I am cautiously optimistic that if this is possible, things are improving. I felt really good for a couple of hours but then all of the bad stuff crept in again: I went to bed feeling exhausted and overwhelmed by my anxiety and depression.
At the end of the week, I spent two days in and out of a hospital in London, having tests done (I wasn’t taking the Propranolol for a few days as advised so that it wouldn’t affect the results). Just being in the hospital and the staff’s general lack of understanding around Autism was stressful and frustrating and exhausting. The first day was quiet but it was hard to relax with the blood pressure monitor going off every twenty minutes. The second day was more involved with more than three hours of tests. It was exhausting – I could barely stay awake for the rest of the day – and my whole body hurt afterwards, so badly that even getting upstairs when we got home was a struggle. I don’t have a whole lot of faith that these tests will show anything different than the first round (which resulted in the POTS diagnosis) or in medical tests in general anymore but I guess we’ll find out what they say in a few weeks.
At the beginning of the week, I officially gave up on Temazepam since it didn’t really seem to be doing anything. My GP had prescribed melatonin for when the Temazepam ran out so, with her blessing, I started taking that instead. It definitely improved my ability to sleep: after months of being awake for hours on end, I was falling asleep within half an hour every night. But I was still sleeping late – into the afternoon – and feeling sleepy in the day. I had several RedBulls in a week for the first time in months, which is a step backwards that I’m not happy about. I don’t know whether it was the melatonin or a side effect of the Moclobemide (not unlikely since I had the same side effect with Phenelzine) but, regardless, I hate it. This was one of the reasons I was so excited to try the ADHD meds; I thought I might finally feel something other than exhausted or sleepy or tired.
My chronic pain kicked up again, which was deeply unpleasant. My whole body hurt all week: every joint felt ache-y and crunchy and grind-y. I took painkillers throughout the day but the pain woke me up at night almost every night. But the only painkillers that help are ones that I can only take for a few days at a time and when those three days ran out, I was back to Ibuprofen and Paracetamol – neither of them do much – which was miserable and so frustrating: this has been going on – on and off – for almost two years and all I have are sporadic three day periods where I’m somewhat pain-free. The lack of progress is enough to reduce me to tears.
Mental health wise, things were up and down. Some days were okay and I actually got things done for the first time in ages, but some days were really hard. My anxiety was still bad and I was restless and uneasy; I didn’t know what to do with myself. I just felt like I was making everything I worked on worse. I was depressed, feeling overwhelmed and hopeless.
WEEK 4 (450mg daily)
I was sleeping but sleeping restlessly and waking up a lot. And come morning, it was such a struggle to wake up. I would fall asleep again and again; staying awake felt impossible. I don’t know if that’s the melatonin or something else but it’s pretty miserable. I feel like I cannot open my eyes, cannot make my hands work. It’s not fun. At the other end of the day, things are generally better. It can take a while to get to sleep but it’s nothing like it used to be. It can take a while to get comfortable, wind down, relax but I’m still getting to sleep easier than I was without the melatonin.
In the daytime, I was getting sleepy within an hour of getting up and drinking Red Bull almost daily again. It’s not something I want to make a habit of but I was just too tired to figure out what the right thing to do was so I just focussed on getting through the day. But even with the Red Bull, I was tired and sleepy and all I wanted to do was close my eyes. Again, I don’t know if this is the melatonin or the Moclobemide but either way, I don’t know what to do. If it’s the melatonin, I can stop taking that and hope my sleep stays okay but if it’s the Moclobemide, then I’m pretty stuck. I really don’t want to spend my whole life feeling tired and sleepy because this is the only medication that works.
I’ve started working again – a bit, given how unpredictable everything’s been recently – after being completely unable to since the end of last year. That’s been good and hard (and completely exhausting) in equal measure, socialising too. It’s nice to be in contact with people again but so often, at the moment at least, it also makes me feel defective and broken. My friends are telling me about their jobs and their relationships and so on and all I have to talk about are the new meds I’m trying and the new therapy I’ve been thinking of trying. When you’ve been depressed and suicidal for the past four months, there aren’t a lot of light and fun conversation topics to reach for. So I just felt very lonely. I’m not putting that on my friends – I want to hear about their lives – but the disconnect is hard.
My chronic pain was bad too. My whole body was hurting, my joints aching, even my fingers. I still haven’t heard anything from the Pain Clinic so all I’ve got are over the counter painkillers that I can only take for a few days at a time. What I’m supposed to do on the other days, I don’t know; nothing else helps at all.
I’ve realised that I’ve been feeling cold a lot, pretty much all of the time. I’m not sure when it started but it’s been going on for a while. Even with a thick jumper, a scarf, wooly socks, and a blanket, I’m freezing.
Mentally, it was a tough week. I felt very anxious and overwhelmed. My depression was pretty bad too, although not as crippling as it has been, and I was just miserable really. I cried a lot. So, yeah, a tough week.
WEEK 5 (600mg)
My energy and sleep continues to be troublesome. It’s so hard to wake up in the morning: I keep going back to sleep, I can’t keep my eyes open, and my hands won’t work. I’ve found that eating right away helps but I hate it as a strategy; food is the last thing I want right after I wake up. Despite the difficulty, I have been managing to wake up earlier than I have been over the last few months and getting to sleep has been a bit easier (with the help of the melatonin – although it does sometimes feel like I have to focus really hard on falling asleep sleep, which seems to be somewhat counterproductive). But I was still very sleepy during the day, falling asleep accidentally a couple of times, and so tired, although it was a busier week. I was doing more, socialising more, and feeling everything more intensely. There were some really good moments but it was hard too.
And, of course, more activity has resulted in more pain. I’ve been in pain constantly but it’s gotten worse. Multiple long car journeys and more time on my feet has caused problems with my back; I’m sure that with time, sensible exercise, and slowly building up my stamina, things will get better but it’s really hard to be patient. The pain has also been really bad in my hands (from my elbows down to my finger joints), which instantly instills a cabin fever-like feeling inside my own skin. I’m still waiting to hear from the Pain Clinic but experience doesn’t exactly encourage high hopes for what they’ll come back with, if they ever do.
My mental health has been all over the place. Five weeks of this medication and I still don’t feel like I’ve got my head on straight. As I said, I’ve had some good moments this week but I’m still struggling, more than I feel like I should at five weeks of a medication. I’ve had a lot of anxiety and my depression is still very present. My suicidal thoughts aren’t as constant as they were but they are still there. I guess, I just would’ve hoped that, at this point, I’d be feeling better mentally. It’s hard to not lose hope.
So, I’ve been taking Moclobemide for five weeks and while things are very different from day one, I’m still not feeling great. My depression is still a constant, day-to-day battle, which is one thing if I’m waiting for medication to kick in and for it to get better but if this is it, it’s not enough. I’m grateful that things are better – that I can write songs again – but living like this is really, really hard. I just want to feel better. I don’t want every day to feel like a mountain that I have to climb. I guess, I just want to feel normal. Although, having said that, I don’t know if I even know what normal feels like.
Category: adhd, anxiety, autism, chronic fatigue, depression, emotions, food, heds, medication, mental health, music, self harm, sleep, suicide, treatment Tagged: adhd medication, antidepressants, anxiety, bupropion, caffeine, chronic fatigue, chronic pain, creative block, depression, diazepam, drowsiness, eds, heds, hypermobile ehlers danlos syndrome, hypermobility, insomnia, loss of appetite, maoi, maois, medication, mental health, mental illness, migraine, migraines, moclobemide, pain, pain clinic, pain management, pain medication, phenelzine, pots, propranolol, red bull, self harm, self injury, sleep, sleep schedule, sleep wake cycle, sleepiness, songwriting, suicidal, suicidal ideation, suicidal thoughts, suicide, temazepam, trigger, trigger warning, tw, writers block, writing
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.