Trying Tranylcypromine

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.

WEEK 2

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.

WEEK 3

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.

Another Autistic Summer

Summer as an autistic person can be really difficult. There are a lot of changes and some of them can feel quite extreme, quite overwhelming: the heat, the humidity, the general increase of people out and about… It can feel like a lot to deal with. I don’t pretend to know everything – not by any means – but I thought I’d share some of my thoughts and strategies for dealing with some of the big summer stresses…


SENSORY ISSUES

  1. Too bright – While bright skies are a sensory issue year-round, the summer months are hard in their own way: the light feels like it has a different intensity, it reflects back at me differently, it’s a different colour, it’s present for more hours of the day… It’s hard work on my eyes. I like working in my living room because it has white curtains, allowing for some light but without the glare (although anti-glare glasses are a good option to explore if you’re struggling inside). Outside, sunglasses are the obvious protective measure, but polarised sunglasses are better if you can get them.
  2. Too noisy – I find noisy environments very stressful and my anxiety only increases the longer I am in that noisy environment. The sensory overload is just too much and I become less and less able to function. And with more people around in the summer, the noisier it tends to be and therefore, the more stressed out I can get. I’ve found that the most effective coping mechanism is noise-cancelling headphones but playing music or audiobooks/podcasts through headphones and earplugs (if you find them helpful, you can have ones specially made – relatively inexpensively – to fit your ears, making them more effective) also work.
  3. Too hot – I’ve always found the heat of the summer very difficult and have been using open windows, fans, damp flannels and so on for years. But over the years, I’ve found the noise that regular fans make more and more anxiety-provoking so I finally invested in a Dyson silent fan. It was expensive (note: they are less expensive outside the summer months) but it was one of the best investments I ever made in managing my day to day health; it’s the most effective fan I’ve ever had and I use it year round. It’s more than made up for the expense. It’s also important to remember to drink as much water as you can – this is especially important for those with hEDS as well as dehydration makes the symptoms worse. Carrying a water bottle with you, having an app that reminds you to drink regularly, and so on can help you to remember and help you to build it into your routine.
  4. Different clothes – Following on from problems with heat, that often demands an entirely different wardrobe, which can be a less than comfortable change, literally and figuratively. It can involve different, uncomfortable fabrics or less fabric altogether, which can result in chafing or just feeling really exposed when people look at you. Finding specific fabrics – like cotton or linen – that aren’t irritating can be helpful. Layering, so that you can stay covered up as much as you need to to be comfortable, with thin fabrics can allow you to balance the need to keep cool and the need to be covered. And if you find a piece of clothing that really works for you, I recommend getting several to avoid the repeated stress of trying to find comfortable clothes.
  5. Crowds – As we know, in the summer, there are more people out and about and the world just feels more crowded. Public places are busier and that can be really stressful. Especially with the anxiety around COVID-19, crowds and crowded places can feel overwhelming which can cause anxiety attacks or meltdowns. The obvious advice is to avoid busy places at peak times but we all know that that’s not always possible. We all have our own strategies for managing anxiety but the ones I find most helpful in this situation are having someone I trust with me, giving myself plenty of time so that I don’t have that additional pressure, and I’ve also found the sunflower lanyard useful in certain places.

CHANGES IN ROUTINE

  1. Day to day changes – For some of us, our routines change regularly with the seasons but that doesn’t make it any less stressful. As someone who finds change very stressful, I try to make these changes slowly so that I have time to adjust and don’t end up feeling overwhelmed. It requires planning but it can really reduce anxiety.
  2. Loss of structure – While this isn’t, of course, applicable to everyone, the summer is often when people have time off from their usual occupation or go away on holiday. And with these things, we often find ourselves without structure. A lack of externally imposed structure can lead to a lot of aimlessness and/or anxiety so learning to build our own structures is a good skill; you don’t have to fill your schedule from opening your eyes in the morning to closing them at night but giving yourself things to do and think about (beyond their inherent value) keeps you moving and feeling and living. I do struggle with this but I’ve found it really helpful to have my family prompt me when I get stuck in a rut.
  3. Seeing less of some people and more of others – As I talked about in my BPD Awareness Month post, I get very anxious about my relationships and fearful that I’ll mess them up or that my issues will be too much for people. So a big change in my routine of seeing friends makes me very anxious. Living with such limited energy, socialising is something I find stressful because it requires so much energy, even though I enjoy that actual spending time with people. I’m lucky that my good friends are really lovely and really understanding but I still worry. I haven’t really figured out a good way of dealing with this anxiety but I do try to be as honest as I can with my friends and family so at least we all always know what the situation is.

ANXIETY

  1. Trying to do too much – When I have free time, I often end up struggling with a lot of anxiety, usually about whether or not I’m using the time in the best way (partly due to the fear that if I say no to too many things, people will think I don’t care and eventually want nothing to do with me). This can result in trying to do too much, more than my health – my sensory issues, my energy levels, and so on – really allow me to, which can lead to meltdowns or feelings of burn out. Over the years, I have gotten better at judging what I can and can’t manage and what’s really important to me but I still find it difficult and stressful and sometimes upsetting. I think it comes down to practice and self-compassion but that’s easier said than done. (I know that I also have issues about being as productive as possible but I also have a lot of anxiety about time running out in general, in multiple aspects of my life, which means I often end up pushing myself too hard. But I can’t say I know what to do about those issues at this moment in time.)
  2. The stress of holidays – While there are fun things about holidays and travelling, there are a lot of really stressful aspects, from the actual travel like flying to all the new-ness to being cut off from all of the normal coping mechanisms. There’s also a weird expectation to have fun on holiday that can create added pressure. Personally, I’ve found that the absolute best thing I can do in these situations is just talk to whoever I’m with and try to be realistic about what I can manage, although it’s still a learning curve. It doesn’t always feel like enough but I’m still learning to adjust my expectations to fit with my physical ability; I struggle with feeling guilty about ‘wasting opportunities’ too but, as I said, learning to let that go is a process and requires practice and self-compassion.
  3. Anxiety around what comes next – This is the first year where I haven’t been in education (or had education on the very near horizon) so I can only really speak to the experience of being in education and how it can, at times, feel like an endless hamster wheel. Every year, there’s the freedom of the summer holidays but there’s anxiety too. I always had this anxiety in the back of my mind about what the next year would bring, having finally gotten comfortable in the patterns of the year just gone. After all this time and all these years, the new academic year still stressed me out to an almost unbearable level so I don’t really know how we, as (disabled/neurodivergent/struggling) students, are supposed to manage that stress. I think a big part of it is on the schools and how they handle the roll out of the new year and talking to the school about it can help but, personally, I haven’t had much experience with that making things better. But I have to hope that they will eventually improve.

I know it’s been a while since my last post. A lot has happened and I’ve been having a really, really hard time. Some of that is stuff that I would like to write about at some point but I still feel like I’m stuck in the middle of it. Plus, I’ve been really struggling to write – with even being able to string a sentence together – which hasn’t been helping anything. Things still aren’t great – which may be the biggest understatement of my life – but I miss writing and I miss writing for this blog so I’m trying to push through. I wrote most of this a while ago and, given how hot it’s been recently, I wanted to get it up while it might still be helpful. I hope it is.

A Moment of Modafinil

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.