Living With Unmedicated ADHD

It’s been a while since I last talked about my ADHD so I thought it was time for a little update. A lot has happened since I was diagnosed, some of which I thought might be worth sharing…


It was a lot to process that I did my BA and have been doing my MA with undiagnosed and unmanaged ADHD but the diagnosis had me looking back over the last few years and a lot of things started to make sense: why I’d excelled in certain areas and struggled desperately in others. Part of me was impressed with how I’d done, factoring in this new obstacle that I’d been unknowingly battling against, but on the other hand, it makes me sad that I’ve had to, you know? It makes me sad that I’ve had to work against my own mind all this time without anyone noticing or supporting me – in this sense, at least. Life could’ve been so much easier.

And now I have to finish my Masters unmedicated.

Because I take Phenelzine for my depression, there’s the risk of interactions with stimulant-based ADHD medication so I can’t take those; both medications have the potential to raise a person’s blood pressure and together, that could be very dangerous. However, given the extreme drowsiness I experience as a side effect of the Phenelzine, I can’t take a non-stimulant medication either due to the high chance that they’ll add to the drowsiness. It’s hard enough staying awake and (somewhat) focussed during the day. I can’t afford to make it worse, especially in this final module of my Masters, the one I’ve been looking forward to since I started the Masters. So it looked like a dead end. But I wasn’t giving up at the first hurdle so I did what I always do: I started researching.

After a bit of searching, I found a research paper about a series of studies done, combining medications when traditional routes failed to work. One of those cases detailed a man who only responded to an MAOI (which is what Phenelzine is) and a stimulant-based ADHD medication. He had to continuously monitor his blood pressure but had no problems and continued on the two medications indefinitely, which allowed him to live a normal, productive life. That seemed very promising, as a starting point for discussion at the very least, so I sent it to both my psychiatrist (who’s been managing my medication for years now) and the ADHD specialist.

My psychiatrist was willing to try, provided I was diligent about checking my blood pressure. Despite our initial ups and downs, we have a really good relationship – and we have had for a long time now – and he always takes my thoughts, opinions, and research into consideration, which I really appreciate even if he ultimately opts for a different approach. So that felt good, like a step in what felt like a positive direction.

We didn’t get a response from the ADHD specialist for weeks. To begin with it was just frustrating but as time went on, I started to swing between despair and anger. I felt like I’d just been abandoned, dropped without a word (something that’s unfortunately happened enough times that it’s become a big trigger for anxiety attacks, episodes of depression, and even autistic meltdowns, depending on the situation); sometimes it feels so upsetting that these medical professionals can just go home at the end of the day and leave all of the struggles of their patients/clients behind while we all have to keep living (and suffering) from them. I know it’s not that simple – that they don’t just stop caring, that they can’t and shouldn’t have to work ridiculous hours – but in my desperate moments, in situations like this, it feels hard to feel supported, to believe that they do care, that you’re not just another file rather than a person struggling through each hour.

After some extra complications due to communication problems, we finally heard back and she was saying a categorical no, having had previous patients respond badly to the combination. While I can understand that, I found it frustrating that she wasn’t even open to trying it. I’ve always responded unusually to medications (proven again and again by my experiences with more than fifteen medications/combinations for my depression – the only one that’s worked is one that’s rarely used) so I was frustrated by the brick wall approach she was taking. My psychiatrist was still open to trying and said he’d talked to her about transferring the medication aspect of managing my ADHD to him since he’s been treating me for so long and has a detailed understanding of my history. But she said no.

So that’s it as far as I can tell. Unless I change my antidepressant, (I have to point out again) the only one that’s helped me, I can’t take medication for my ADHD. It’s essentially come down to choosing which of the conditions to treat, my depression or my ADHD, which just makes me feel so upset and frustrated. Treating my ADHD could make a huge difference in finishing my Masters but I’m getting blocked at every turn. It’s almost worst now than before I knew about the ADHD. Before, I was struggling; now, I’m struggling and I know why but I can’t do anything about it. The whole situation makes me so angry, so angry that I couldn’t do the most recent online appointment. I wasn’t in the right headspace and I doubted my ability to be receptive when my emotions were so all over the place.

My Mum took the meeting but it hasn’t changed anything. I’m still not getting any treatment, any support. I feel like I’ve been given this great weight to carry but abandoned to carry it without help or advice. I don’t know what to do. I don’t know how to move forward. I feel like I’ve been let down by someone who’s job it was to help me. Again. It’s upsetting and exhausting and stressful.


I don’t say these things to encourage a mistrust of doctors or because I regret the ADHD diagnosis. I just need to be honest – for the sake of my own mental health – and while I generally try to see the positive, sometimes the situation just sucks. It’s just bad and hard and makes a mess of you.

Yet Another Medication Review

It’s been a while since the last medication review, hasn’t it? That’s mainly because, having starting the Masters, I didn’t want to add anything in that could make life more difficult. We all know that some of these drugs can cause really unpleasant side effects and I didn’t want to potentially lose weeks of university because of that.

The system we had was a good one but it wasn’t a long term solution. My medications were helping with my depression but I was still having major problems with my anxiety. I was taking Phenelzine, Pregabalin, and Diazepam for when the anxiety got really bad, which was basically all the time. So I was taking Diazepam constantly, something that isn’t recommended although my psychiatrist had signed off on it as a short term plan. So eventually we decided we had to try something new. My psychiatrist recommended Aripiprazole, which he was fairly confident would be side effect free as the combination of three is one he’s used regularly with very few reported side effects; he also said we’d know very quickly whether it was working or not. Plus it might actually give me some energy (hurray!) so I gave it a go and kept notes as to how it affected me.


Week 1 

For the first week, I was still incredibly anxious and I felt like I couldn’t breathe unless I was taking Diazepam. Having said that, there was a lot to be anxious about that week so I was dealing with both ‘normal’ anxiety (university stuff) and ‘clinical’ anxiety (anxiety without a cause). It was a very difficult week.

Week 2

I still had a lot of anxiety and was very stressed. I was also incredibly sleepy – I could barely keep my eyes open all day everyday – but then both that week and the week before had been very stressful so that definitely could’ve contributed. But it was like a sedation-like sleepiness rather than just a general tiredness. I was drinking so much red bull to stay awake and even then I was still having accidental naps. I also started experiencing a symptom completely new to me where I couldn’t find the words I wanted when I was talking: I’d get halfway through a sentence and I knew the word I wanted but I just couldn’t find it. It happened when writing too. It was very stressful since being able to express myself through words is so important to my mental health.

Week 3

I still had a lot of anxiety, requiring Diazepam multiple times a day, and I still struggled with the sleepiness, finding it really difficult to keep my eyes open. I’m probably fifty percent red bull at this point. I was still having trouble with my words, which was only getting more stressful. I’d also had an incredibly emotional week, which probably didn’t help.

Week 4 – 6

A month and a bit in, I was still experiencing the symptoms/side effects I’ve been talking about but a new one appeared, one that was the deciding factor for me with this medication: my hands started to feel thick and stupid, like I was wearing ski gloves. I hated it. I couldn’t play guitar anymore and that made the decision for me. So that was it. It hadn’t helped my anxiety and had caused more problems so we decided that I would stop taking it.


So I stopped taking it and within a day, the thick hands feeling stopped. It was such a relief. I’m still having the occasional problem finding the right word, more than normal, but that has improved. The sleepiness and anxiety have remained the same though, which is very disappointing and distressing. I’m still having so, so much anxiety and the Diazepam is not a solution. The next option is to try reducing the Pregablin and see if that helps so that’s the next step. I guess we’ll see how that goes.

A Week in My Life (Reading Week)

A while back, I had a reading week as part of my university semester, where classes don’t happen and we stay home to focus on our studying. Being a part time student meant that it wasn’t much of a change as I’m only at uni one day a week but not having to expend the energy that that requires allowed me to do more, both in terms of uni work and in other areas. Yes, I researched for my essay, prepared for a presentation, and wrote songs, but I also did a whole bunch of things for my job as a singersongwriter.


MONDAY

I got up, did my hair and makeup, and caught a train to London. I’d booked a slot at the Selfie Factory at The O2 Arena, thinking that Richard (Richard Marc, who also does all my photography – he’s a photographer as well as a writer, musician, and producer) and I might get some good social media content. I get very self conscious having my photo taken but I’m trying to get over that anxiety and it looked like fun.

I used the train journey to send a load of emails, which made good use of the time, and then I met Richard at The O2. The Selfie Factory was small but it had some really fun set ups and we had great fun, especially in the ballpit.

We got some nice photos and when our time ran out, we headed home. Again, I used the train journey to be productive and worked on a rough script for my university presentation – we all had to give presentations on our essay subjects the next week when we were back in regular classes. I’d already made the slides with the information but I wanted a rough script to keep me on track and provide extra information.

I got home and, even though I was exhausted, I practiced several of my songs as I had a recording session coming up later in the week that I needed to be prepared for. I wasn’t super familiar with the arrangements of the songs I was singing so it was quite hard work but I definitely made progress, getting used to the rhythm and melody. It was a good practice.


TUESDAY

I started the day with another big batch of emails: uni stuff, music stuff, gigging stuff.

That took an hour or so and then I spent the rest of the day doing research for my assessment essay. There’s not much to write about here really; I just read relevant sections of books, read articles, and pulled useful quotes, putting them in separate documents to keep everything organised. This session was focussed on imagery, specifically in songwriting, obviously. It’s surprising how few books on songwriting go into any detail around imagery.

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At least I had some good company (and entertainment).

I had a gentle evening, working on a blog post and watching old episodes of Grey’s Anatomy. There’s something very comforting about the familiarity of them and the time when I first watched them.


WEDNESDAY

I spent the morning practicing for the recording session, going over the songs, and then, after lunch, I had an appointment with my psychiatrist.

The practice had moved since my last appointment so there was an element of anxiety about going but it was okay and turned out to be a really productive session. My psychiatrist agreed with my decision to come off the Aripiprazole, since it clearly wasn’t working, and we discussed what else we could try to help with my anxiety. We also talked about what could be causing my drowsiness and decided to try reducing my Pregablin as it’s clearly the current medication situation that’s causing it. So we’ll see how that goes. And considering we’re changing that, we decided to stick with the Diazepam for my anxiety so that we’re only changing one thing at a time and can clearly see the results. Otherwise you can’t tell what’s causing what. So that’s progress and we’ll just have to see what the effects are.

Late in the afternoon, I caught a train up to London in preparation for the recording session the next day, using the time to do some more reading for my essay. My frequent train journeys are great for any reading I have to do for my course. From Victoria, I made my way to where I stay in London: the flat belonging to one of my parents. I was suddenly, out of nowhere, overwhelmed with anxiety and although I took Diazepam as soon as the feeling started, it obviously doesn’t kick in straight away so I spent most of the journey talking to said parent, a mix of distraction and reassurance. I’d just started to feel calmer when I got there.

We had dinner together and then I spent the evening in the pursuit of catching up with my diary. It feels like a hopeless task; I’m so behind, what with the time taken up by uni work and managing my mental health. I’m hoping to catch up once I’ve submitted my essay. It’ll take a while though.


THURSDAY

I slept terribly. So terribly that I barely got any sleep at all, the worst I’ve slept in years. Maybe I was nervous about the recording. I finally got a solid hour or so just before my alarm went off. But it was an important day so I dragged myself up, got ready, and headed to the University of West London where we were using one of their studios to do the recording.

It was a beautiful studio and we had a lot of fun. Having said that, we worked bloody hard. We worked from about eleven until six, filming and recording for a project that I’m not going to talk about yet. It’s a surprise. It does mean there’s not a lot for me to write about, other than the fact that I’m super grateful to everyone (all tagged below) for the work they put in. I really, really appreciate it.

When we finished, I was so tired that I thought I might throw up. I manage to help pack up a little but eventually I just had to leave. I felt bad for not staying to the very end but everyone was very understanding. I got home and barely made it through dinner before falling asleep at about half past eight.


FRIDAY

I slept for twelve solid hours and woke up feeling like an entirely different person. Still, I had a slow, gentle start. I had breakfast, got showered and dressed, and did some reading for my essay.

Around lunchtime, my Mum arrived, on her way home from visiting her Mum (this was when we still thought we were going to Nashville and she’d obviously wanted to spend some time with her before we went). She’d stopped in London because we had a plan to have lunch with one of my best friends, Sharné, and her Mum, who had come to visit her. The four of us had hoped to spend a little time at the songwriters circle I’d played (the one I mentioned in my previous A Week in My Life post) but it was busy and loud and it just wasn’t the right setting. So we’d planned lunch at this awesome Italian restaurant.

It started out quite stressfully due to pouring rain and terrible traffic but once we were all together, it was lovely. They’re both so lovely. We all got on really well and have a lot in common; it was just unfortunate that we didn’t have longer. Hopefully we’ll get another chance at some point.

We said goodbye and me and Mum headed home to Brighton. When we got in, I curled up on the sofa with a couple of the cats and had some diary time. I was exhausted and really just needed some quiet, rest time.


SATURDAY

Richard came down first thing because we were performing at the Access Open Day at The Brighton Dome. We picked him up from the station and went home so he could drop off his stuff and we could have a quick run-through, especially of the songs that we’ve only just started to perform like ‘Clarity.’

We headed to The Dome and had everything explained to us, where we could store our stuff, hang out between sets, and so on. We were playing once at 12.30pm and again at 2.15pm so we’d have time to kill between sets. There were other talks and activities going on but I’m never able to concentrate when I’m about to perform.

Both sets went really well. I felt like my voice sounded really good, I didn’t make any (obvious) mistakes, and I felt really confident in my body and how I was moving as I performed. I’ve done a few gigs recently but before a couple of months ago, it had been a long time since I’d performed so it’s felt a bit like starting all over again. But this felt completely natural and quite possibly the best I’ve ever performed. I’m just sad more people didn’t see it because they were performances I was really proud of. But I had a great time, telling the stories behind the songs and singing my heart out. It felt so good. And that’s the important thing.

This is a picture from the first time I played there:

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When we got home, we were both still buzzing with adrenaline so I suggested we write a song since we’re not getting a whole heap of opportunities to write together at the moment with both of us on Masters courses. So we got to work and managed a track and half a song before we ran out of energy. It was really fun and I’m really excited to finish it.

And before the day was up, I put up a blog post as I always try to do on a Saturday. This one was the one about February Album Writing Month, where I tried to write fourteen songs in the month of February. I’m proud of succeeding in the challenge and proud of the post I wrote about it.

We had an early dinner and were basically falling asleep on the sofa so we dragged ourselves up and went to bed early. I was asleep within minutes.


SUNDAY

We had a gentle morning, watching Friends together and companionably working on different things. I finished a blog post and put it up, #30dayfeb Challenge For Tommy’s. It covered my attempt and completion of Liberty’s Mother‘s challenge to do something positive for your wellbeing from the 1st February to the 1st March. I’d chosen origami.

Richard went home because I had a few things to do, as much as I would’ve liked to have him stay and work on the song and chill out together. So we dropped him at the station, came home, and I got to work, practicing my presentation for the following Tuesday. I was confident with the material and the questions I wanted to ask; I just wanted to make sure it was within the time limit. So I ran that a few times and then spent the rest of the day resting. I also have dinner with some of my family on Sunday nights (when we can manage it) so that was really nice.


So that was my reading week. Not as productive uni work wise as I would’ve hoped – I wanted to have started writing the essay rather than still adding research to my structure – but it was very productive in the working-as-a-singer-songwriter sense. And those opportunities don’t come around super often so I’m really grateful for them. So it was a good, if exhausting week.