Farewell Phenelzine 2.0 (The 2021 Edition)

The decision to change my medication has been a long time coming. I was diagnosed with ADHD back in January but, for various reasons, I haven’t been able to take any medication for it up to this point. As I said in this post, my specialist wouldn’t allow me to take any of the classic, stimulant medications for ADHD while I was still taking my current antidepressant, Phenelzine. So, in order to take anything for my ADHD (other than the less common medications that would only make me even drowsier than I am currently), I would have to come off the Phenelzine and either try a different antidepressant or try going without one. That all felt too much to manage while I was doing my Masters – it feels like a lot to manage now – but now that the Masters as is over and I’m already in a period of transition, it felt like it was time to come off the Phenelzine. The side effects were going to throw a wrench in several plans but that was going to be the case regardless of when I decided to do it and I hated the feeling of having it hanging over me. I know I need to do it but a big part of me really didn’t want to (and is still sceptical to a certain degree): over the last ten years, I’ve found it all but impossible to write songs during the periods when I wasn’t taking Phenelzine so it’s not surprising that it’s not exactly an easy decision. But if I want to get out of this limbo state, then I need to try.

So, beginning the 18th November, I started to reduce the dosage of the Phenelzine. For two weeks, I took half my normal dose and then I went another two weeks without anything in my system, giving my body the time to filter out any traces of the Phenelzine (known as the wash out period) and ensuring that way any new drug I take won’t result in a negative interaction. As always, it’s important to point out that this is a plan I’ve worked out with my psychiatrist and my ADHD specialist and is specifically tailored to me. If you’re making any changes around any medication you’re taking, please consult your doctor first.


REDUCTION PERIOD

WEEK 1 (Monday 18th October – Sunday 24th October)

For most of the week, I felt fine, which surprised me: usually, if I miss a dose of Phenelzine, I get hit with a headache pretty quickly but for some reason, that didn’t happen this time. I was tired and a bit more emotional than usual but nothing that out of the ordinary, nothing that couldn’t just happen anyway. I think those first four days lulled me into a false sense of security.

It hit me on the Friday. I felt weak and shaky and had a really unpleasant headache. And that turned into feeling absolutely awful over the weekend: I had debilitating migraines; I felt nauseous, shaky, and lightheaded; I thought I might faint every time I stood up. I also developed an annoying cough and, after multiple COVID tests, I had to assume it was part of the withdrawal and not COVID related (thank goodness – I don’t think I could’ve coped with that as well and I’m glad my family didn’t either).

WEEK 2 (Monday 25th October – Sunday 31st October)

The cough and the migraines continued into the middle of the week and then, fortunately, they started to let up. My sleep schedule was utterly screwed up: I was struggling to get to sleep and not drifting off until between two and five am and then, because I was so exhausted, I was sleeping in to the middle of the afternoon. And as hard as I tried, I couldn’t correct the schedule. I also had really weird, really vivid dreams that took me a while to drag myself out of and separate dream from reality. I did have a sudden, deep dip in mood where I felt really awful and discouraged about the various things I’m currently working on, which was scary: my big fear about coming off the Phenelzine has been returning to that really depressed place I was in before so to feel it happening was horrible. But fortunately it didn’t last and I’ve tried to just stay away from things that trigger those kind of feelings, for the duration of this changeover at least.

By Sunday, things had started to improve and I was feeling a bit more human. Having said that, I was not looking forward to the rollercoaster that the next two weeks were likely to be.

WASH OUT PERIOD

WEEK 1 (Monday 1st November – Sunday 7th November)

The beginning of the week was okay with just minor headaches and some nausea, both of which were pretty ignorable. And apart from sleeping really deeply and the continuation of the weird, vivid dreams, I felt okay. But by the end of the week, I was feeling very tired and just generally unwell again. The cough had faded but it picked up again and then, on Sunday, the nausea was back in full force.

WEEK 2 (Monday 8th November – Sunday 14th November)

This was a very big week. Unfortunately. It was a really bad time to be coming off a medication but, as I said, it’s almost always a bad time. There’s always something happening so I just had to get it over with. But this week held both my graduation from university (I had a great time but physically, I did spend the day counting down to the next dose of painkillers and – on several occasions – actively focussed on not throwing up) and my Granny’s Celebration of Life service (thankfully, by that point, I was feeling a bit better and was able to just focus on the day without too much distraction). Given those two huge things, I spent a lot of the week dealing with a lot of physical exhaustion and pain.

The cough was ongoing and I had migraines for most of the week, although they did lessen in intensity by the end of the week. I was nauseous, shaky, and overly emotional but, again, that had mostly passed by the weekend. On the Sunday, I was a bit weak and nauseous but I felt a lot more human than earlier in the week.


So, four weeks later, I’m finally starting medication for my ADHD. I’m excited but I’m also nervous; I haven’t had many good experiences with medications and it’s taken a lot of trial and error to find the only one that’s helped so far. So it’s a bit scary to be starting over with a whole new category of medications but I’m trying to stay… cautiously optimistic. I’ve started Xaggitin XL and now, I guess, I just have to wait and see.

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.