Finding HopeExperimenting With Melatonin
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.
WEEK 1
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.
WEEK 2
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.
WEEK 3
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.
WEEK 4
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.
WEEK 5
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.
Insert Joke About Being Iron Woman
Posted on June 15, 2019
Several months ago, I had some blood tests done and they revealed that I was incredibly low in iron. Since I’ve had some pretty unpleasant experiences with supplements, my doctor recommended an infusion and set it up straight away at the local hospital. I was really impressed by the efficiency of it all: the speed at which the problem was identified and the treatment arranged. That was the last we saw of that.
The actual hospital visit for the infusion took six hours. All was going smoothly: they’d taken my blood just to double check the iron levels but then we saw no sign of the doctor for over an hour. When someone eventually appeared, they told us that somehow they’d managed to test for everything but iron and were having to run the tests again. It took so long that I fell asleep in the chair.
Hours later, they finally had the infusion in. It was cold and made me feel kind of sick. It was a bit like when you get a general anaesthetic, if you’ve ever had one of those. But it was okay. It only lasted about fifteen minutes and then I had to stay for half an hour to make sure there weren’t any negative interactions. But then it was all over and I could go home. I thought I’d keep notes on how I reacted in case it would be useful to anyone else.
WEEK 1
I slept very late everyday (sometimes into the afternoon when I’m usually up around eight) and still struggled to get up. Despite all the sleep, I could still nap in the day and would start dozing off around ten. I had absolutely no energy. I tried to continue my routine of getting up early to swim but I could barely drag myself downstairs (or even out of bed); I couldn’t stand up long enough to shower and had to wash my hair in the bath, which I absolutely hate doing. I was very shaky and felt just generally unwell.
WEEK 2
At the beginning of the week, I also reduced two of my medications, Clomipramine and Flupentixol, as I’d previously planned with my Psychiatrist. The infusion came about so quickly that the plans collided with no time to adjust. I also went down with a migraine during the week so it’s hard to tell what caused what and how each thing affects the others.
Slowly, I started to wake up at my normal time again but I was still very tired and sleepy. Doing anything was a struggle but by the end of the week, I started to feel a bit better and a bit more like myself pre-infusion. I also started to feel like myself pre-Flupentixol: I had my first shower standing up in weeks and I walked around London without feeling like I was going to faint. It felt a bit like a fog was lifting.
WEEK 3
The week began with my first shower standing up and I was positively giddy about it. I had to lie down afterwards but it was amazing to be able to do something again that had been taken away. I was still physically exhausted but I no longer felt like I was going to faint if I stood up for too long.
Mentally and emotionally, I felt like I was declining. I felt depressed and restless; I didn’t know what to do with myself.
I did spend the second half of the week sick, feeling nauseous with a cold and sore throat. I don’t know whether that’s related to the infusion or the changing medications or whether it was a coincidence. Either way, I spent several days in bed feeling miserable.
WEEK 4
At the beginning of the fourth week, I reduced the Clomipramine again. I wish all of these things could’ve happened separately from each other so the effects could be clearly identified by unfortunately, that just wasn’t in the cards this time. The reduction of the Clomipramine, an antidepressant, no doubt had a real impact on my mood. I felt overwhelmed by feelings of depression and hopelessness and I just didn’t know what to do with myself. I couldn’t settle or concentrate so it was hard to distract myself from these feelings. My anxiety also increased, which was an added struggle.
Energy wise, I felt back to my ‘normal’ levels of tiredness: I couldn’t – can’t – stand or walk for very long, big events and big emotions require several days of recovery, I need a lot of sleep. But I’m a lot better. I’m swimming again and going up to London has been easier. So on that front, there has been improvement.
Everything has been fairly consistent since then and eight weeks after the infusion, I went back for a blood test to see if the infusion worked. The results were certainly interesting: by my maths, my iron levels have gone up 4000%. So, for the moment at least, it seems to have worked. In the medical sense anyway – I’m not seeing as much of an improvement as I would’ve hoped, energy wise. I’d hoped that this might explain the ongoing trouble I have with fatigue but if this is up to normal levels and I’m still struggling as much as I am, then it’s not the answer, or not the whole answer.
It’s not the end of the road. In three months, I’ll be going back for another blood test, this time to find out whether my body is holding onto and processing the iron properly. So that may yield more answers, more information. From there, I’m not sure what happens but it’s not the only route we’re pursuing. There’s got to be an answer and I’m not giving up yet.
Snapshot #1: Country2Country Festival as an Autistic Person
Posted on March 12, 2018
So, while this isn’t specifically a post about mental health, it is about how my mental health affects my life and the things that I want to do so I think it’s still relevant and maybe useful to someone else. There still aren’t a huge amount of resources for people with Autism and music festivals aren’t a naturally autism friendly situation: they’re loud and busy and overwhelming. The obvious advice is to avoid the conditions that cause you distress but when you love music and live music, it’s not that simple. This thing that I love is also a great stress. So it has to be about balance. Am I having a good time? Is this taking more than it’s giving?
So, let’s begin. For those of you who don’t know, Country2Country is a country music festival in London, Glasgow, and Dublin. In London, it’s three days at the O2 Arena with little stages throughout the complex and a big arena show in the evenings. I love country music and I love the country music community in the UK so there are a lot of positive moments but a lot of stressful ones too. I thought I’d write out a little overview of the festival, the good points and the bad, and how the whole thing fitted into the picture of my mental health and experience of Autism.
The biggest consideration for events like these is my lack of energy, especially with my recently increased struggles with fatigue. Standing is a huge part of any festival and for me, standing for extended periods of time (and by that I mean more than a few minutes) results in shaking, dizziness, and overwhelming nausea. Not to mention the disproportional levels of fatigue that build and build until I physically can’t stand up anymore. Most of the shows are standing, especially the ones during the day. And like any concert, there’s the expectation that you stand, as if standing means you care more than someone who’s sitting. My fatigue has been so bad lately that I only went to shows where I knew I could sit down and even then, I really struggled. I had to really pick and choose what I could go to and that came down to an upsettingly short list. But I was determined to enjoy what I could manage.
My 2018 C2C experience began on the Thursday night with a Songwriters’ Circle where a group of songwriters take turns playing songs they’ve written (that have often been released by other artists) and sharing stories about writing them. I love these events: they’re usually pretty laid back and very inspiring. It is one of my favourite things to hear songs as they were originally written and to hear how they turned from nothing into something. I was almost at the back but I was just so happy to be there. The line up was Brett James, Luke Combs, Nicolle Galyon, Kip Moore, and Natalie Hemby who is one of my all time favourite songwriters so I was very excited and they did not disappoint. They played old favourites as well as new songs but I think everyone agreed that Natalie’s performance of her song, ‘Jealous,’ recorded by Labyrinth, completely stole the show. Although I must also give an honourable mention both to Nicolle’s performance of ‘Consequences,’ recorded by Camila Cabello, and Luke Combs’ new songs. And to round off the night in the most perfect fashion, I managed to hang out with Natalie for a few minutes after the show and she was even lovelier than I remembered. So with that as a first night, the standard was set pretty high!
My excitement was so high that I did crash afterwards. I was completely overwhelmed by nausea twice on my way home, to the point where I had to sit on the ground and just breathe until it faded. This is one of the side effects of my most recent medication (for depression) and it’s one of the worst I’ve experienced but once it passed, I was okay. The emotional energy I get from live music and from being inspired and from talking to these wonderful people is unlike anything else. I could live off that night for days, even weeks, and that’s without the rest of C2C. It’s like feeding a dying fire; I come back to life.
Having had to go back home to Brighton, Day 1 of C2C began with travelling into London. My first event of the day was a very exciting one: an exclusive listen to The Shires’ upcoming album. I’d applied for a ticket and not gotten one but one of my friends in the UK Country community offered me their plus one. I can’t put into words how much that meant to me. I’ve been listening to The Shires since their first single came out and I actually went to one of the events they held when releasing their first album. I’ve already said it but I absolutely adore the UK Country community: I’ve met so many wonderful people (and now great friends) while queuing for gigs or while waiting in meet and greet lines and it is just the kindest, most generous group of people. For this event in particular, I saw so many people offering their tickets to people they knew desperately wanted to go and I was so touched to witness that. Personally, I had three people offer me a ticket because they all knew how much I wanted to be there. How amazing is that?! You’ll get no spoilers from me but it was better than I’d hoped it would be and I felt honoured to be there. Ben and Crissie are such lovely people and it has been so special to watch their journey up to this point. I’m honestly so excited to listen to all of these new songs over and over when the album comes out.
We weren’t allowed to use our phones in the session so, for the purposes of this blog post, I took a photo of The Shires appearing in the official highlights video.
I genuinely loved hanging out with everyone and catching up afterwards but it wasn’t long before I started to struggle. I powered through for a while but when my legs started to shake, I had to call it and headed back to where I was staying, although I did have to sit in North Greenwich station for a while because the shaking and dizziness got so bad. I would love to be able to wander around and spend the day listening to artist after artist but it’s just too much for me: my lack of energy, the constant high level of noise, and the overwhelming amount of people. With the latter two, it’s like my brain becomes overloaded and that can trigger a meltdown. I haven’t written about meltdowns very much so far on this blog (although I mentioned them here – a more in depth post is on the list, I promise!) but one way to explain it would be to imagine tapping on glass that has a crack in it. While one knock doesn’t do much damage, they build up and eventually it shatters. That’s how incoming sensory information feels to me. When I reach overload, I experience extreme anxiety and that can lead to crying, screaming, self harming, etc. Obviously that’s not something I ever want to experience in public, with people that I don’t know, where I don’t feel completely safe, so I have to be aware of how close to that point I am and retreat to a safe place when everything starts to feel too much. I went back to where I was staying and had a couple of hours of quiet time before heading back to the O2 for the arena show.
Kelsea Ballerini was my priority with Tim McGraw and Faith Hill’s headline set coming in second; I would have to assess my capabilities throughout the night. Getting into the O2 Arena always stresses me out: there could be a problem with the ticket, they might not let me take my bag in, the metal detector could go off and they’d want to pat me down… All of those things cause me a lot of anxiety before going into a concert but fortunately everything went smoothly this time (having said that, that anxiety still takes a lot out of me, even when the things I’m worried about don’t come to pass). It always surprises me that people can’t seem to tell how anxious I am because to me, it’s everything. It’s all I can think about. But as I said, it was simple, so that anxiety didn’t turn into anything else.
“Can I be Kelsea Ballerini when I grow up? What a fab show. I loved every second of it. I may have cried a little bit because I want to write songs and sing them too and I want it so badly but that’s not necessarily a bad thing. We are made to love things and I love music unapologetically.” (x)
Kelsea Ballerini was fantastic. I’ve now seen her three times in the last year and she’s such a great performer. I got completely lost in it and that was wonderful, even if I did cry a bit because I want that to be me so badly – that’s not something I can ever really separate myself from. But I had a really awesome time, and I actually managed to lose myself in the music and not feel so self-conscious about enjoying myself. Normally, I can barely move for feeling so exposed to everyone’s opinions. So that was really fun. Also, we all need someone to look at us the way Kelsea looks at her audiences…
By the end of her set, I was feeling very shaky and since I wanted to be well enough for Sugarland the next night (I’ve been waiting eight years to see them live!), I decided to go home. That was derailed a bit by some stuff going on with a friend that didn’t exactly help my anxiety and by the time I got home, I was completely exhausted. As is normal after days and evenings of high emotions, it took me a long time to get to sleep but then I slept so deeply that when I woke up, I was so disorientated that a week could’ve passed. Apparently the previous two days had tired me out more than I’d thought because I slept for most of the day and only really managed to get up in time for the arena shows. I was pretty shaky and anxious but having some of my family with me definitely helped.
Sugarland were freaking awesome. One of my parents played me a few Sugarland songs about eight years ago and ever since, I’ve absolutely loved their voices, their songs, and their energy. If I’m jamming out in the car, it’s most likely to a Sugarland song. So we were both super excited when they announced that they were getting back together and even more so when they were on the line up for C2C. We sang and danced (while sitting down) through the whole thing and it was so, so fun. It couldn’t have been better. I mean, there were more songs I wanted to hear but I do understand that they couldn’t just keep playing until they’d performed their entire repertoire. Mostly… Anyway, I was and am a very happy bean for having finally seen them live. It was a dream come true.
“I didn’t think I could love Sugarland any more than I already did but after last night, I absolutely do. The show was incredible and after waiting eight years, it was a dream come true. Apologies to the people behind me for all the crazy dancing and dramatic singalong.” (x)
The headline act of the night was Kacey Musgraves who I have loved since her first album. When I bought my tickets, I decided that I wanted to see her more than anyone on the Sunday so I decided to push myself to stay for her and then not go the next day. I was okay with that trade off and it was worth it. I’d sort of forgotten how much I love her and her writing style and it was so great to hear both my old favourites and some new songs from the upcoming album. I struggled a bit with the graphics on the screens; they made me a bit dizzy and gave me a headache. But it was a great show and I can’t wait for her to come back to the UK in October. I was worried about being in the underground with masses of people so we left a little bit early and had a relatively easy journey home.
“Kacey Musgraves is a princess. I’m loving the new songs.” (x)
It was a good weekend, if a tiring one. I spent the next day in bed, tired and achy and a bit overly emotional, but that’s not an unexpected consequence of an event like this. It takes a lot out of me, on lots of different levels. Because of all the thinking and restricting and careful planning, it wasn’t too bad but I wish it were easier. I wish I didn’t struggle so much and I wish my abilities and my needs weren’t so incompatible with the way the world typically works. Being out in the world is stressful and overwhelming and most places don’t come with a built in quiet room to hide out in while I recharge. It doesn’t help that I find it really difficult to ask for support. I feel like I’m failing for succumbing to these problems and that I should be strong enough to power through, which I think comes from being diagnosed so late: I’ve spent my life thinking this way and it’s not an easy habit to break.
I hope that this has been helpful, or at the very least gives an insight into what it can be like to go to a festival such as Country2Country when you have Autism, when you struggle with your mental health. The positive moments are unrivalled but the difficulties are freaking difficult.
Finding Hope 