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.

The New Plan

The last few months have been tough, medication wise. I had a wonderful, un-depressed Christmas (which I’m massively grateful for) but since then, I’ve been struggling. My mood just kept dropping and my anxiety just kept getting worse and we tried to alter the medication to compensate, to find that perfect balance, but it’s gotten to the point where we just need to try something new. So I’m taking stock of everything and trying to figure out how I feel about all of it.

The Clomipramine (a Tricyclic anti-depressant) worked for a while. As I said, I had a really good Christmas where I felt joyful and energetic and actually happy for the first time in a really, really long time. But then it seemed to lose its effectiveness and my mood dropped, whether that was because I was taking a magnesium supplement (I talk about that here) or because it just had a short shelf life. I don’t know. But it stopped working and my depression returned. Since then, my depression has been stifling and I’ve really struggled with suicidal thoughts, at an intensity I’ve never experienced before.

My anxiety also skyrocketed so, in addition to the Pregabalin (also known as Lyrica) I was already taking, I started taking Flupentixol to help manage it. At first I felt no different but after adjusting the dose, my anxiety decreased dramatically and I started to feel a bit more functional. But in the months since then, it seems there have been a number of difficult side effects: my energy levels dropped dramatically, to the point where even a shower is a real struggle. Standing for any length of time is impossible and I ended up being wheeled around multiple airports in a wheelchair during my Nashville trip. The worst part though was that my hands felt thick and clumsy, like my fine motor skills had just evaporated into thin air. Playing guitar was practically impossible.

At first I didn’t realise that these things were connected to the Flupentixol but thanks to my Mum and her incredible attention to detail, we realised that the dates all seem to match up and since we reduced said medication, these problems have disappeared. I’m ridiculously grateful to have my hands back, even if my anxiety has flooded back in.

We’ve reached a point where I can remain where I am or start over. So I’m starting over. I don’t want to live like this. So, after a lot of thinking and talking to my psychiatrist, I’m coming off both the Clomipramine and the Flupentixol. I’m not a massive fan of the Pregablin either to be honest but even changing two things at once is ambitious. So that one can wait. I’ve already started reducing the meds and I’m bracing myself for a barrage of mood swings, depressive episodes, and more. It’s not going to be fun. But it will be worth it. Hopefully.

The current plan is to come off the two drugs, go the ‘wash out’ period (two weeks of no drugs – apart from the Pregablin – so that there aren’t any negative interactions between the medications), and then start Phenelzine again. Yes, Phenelzine – the drug I stopped taking two years ago because it had stopped working, because the joyfulness it gave me felt fake and suffocating. BUT it’s the only drug that’s allowed me to be functional – creatively and otherwise – so we’re giving it another try. It did work for a long time and if it doesn’t, we’ll try another MAOI (monoamine oxidase inhibitor) anti-depressant.

I’m not sure how I feel about it, to be honest. Part of me is frustrated and disappointed. I’ve spent two years trying to find something better only to end up where I started. But on the other hand, that’s two years of knowledge, experience, and confidence that I didn’t have before. I’m a different person and chances are, my reactions will be different: our bodies change and our chemical makeup is constantly shifting. These medications all but cause a hurricane inside us. So I’m trying to be optimistic. I’m trying to be hopeful.

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Coming Off Phenelzine

Just over a month ago, I decided to change medications. It was a long time coming but I eventually managed to speak to my psychiatrist and we came up with a plan. The first step was weaning myself off the Phenelzine and the second was going drug free for at least a couple of weeks to make sure it was out of my system before trying the new medication. I kept notes to track any patterns in mood and since I couldn’t find many accounts of coming off Phenelzine when I searched online, I thought I’d write about my experience. As always, this is only my experience, which will be specific to the dosage I took and the duration for which I took it.

Week 1

I was already on half of the prescribed dose so, to start the weaning off process, I went down to a quarter of the prescribed dose. Very quickly I felt very irritable, snapping at people over things that normally wouldn’t bother me. I was also overly emotional and ended up in tears a lot, sometimes multiple times a day.

Week 2

In the second week, I stopped taking the Phenelzine altogether. My anxiety skyrocketed and remained really high, higher than it’s been in a long time. My mood was also very fragile, so even small things made me very upset and depressed.

Week 3

In week three (the second week without any medication), I felt completely exhausted; some days, I was so tired that I could barely get out of bed. I was very depressed and felt blank, empty, completely disconnected. It was like everything just bounced off me. I’ve gone through periods of feeling like this before so, even though it isn’t pleasant, it wasn’t unfamiliar.

Week 4

Although I’d already been off the Phenelzine for two weeks, I decided to wait a little bit longer before trying the new drug. It was two weeks minimum and I’ve always been very sensitive to medication so I wanted to make sure it was completely out of my system before starting the next one. I didn’t want any chance of an overlap distorting that experience; I didn’t want to risk writing off something that could help over something as small as a few more days. For that last week, I was just really tired. My mood seemed to stabilise a bit and everything just felt less turbulent. It was that settling of my mood that made it easier to think more clearly and I felt ready to try the new medication.

It’s worth pointing out that my mood has been consistently low throughout all of this. I’ve had a couple of days where I felt a little bit lighter but on the whole, I’ve been feeling very depressed, hence the change in medications.

And now I’m onto the next stage: trying the new medication. I’m nervous but I’m really ready not to feel like this anymore.