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.

Reducing and Coming Off Pregabalin

Months and months ago, I had an appointment with my psychiatrist and we reviewed the medications I was taking and how I was faring mentally. There was a lot to discuss but we spent a significant amount of time talking about how affected my life is by the sleepiness I experience, as well as the high levels of anxiety I’d been experiencing despite taking the Pregabalin. The result of this conversation was the decision to reduce and eventually stop taking the Pregabalin as it didn’t seem to be helping.

The reduction ended up being pretty uneven, without any particular structure. That was mainly due to the decision to take my time and take less as I felt able to; I didn’t make any alterations during my assessment period at university, for example, as I figured I had enough to cope with. But there were also periods when I was so preoccupied that I simply forgot that I was in the process of reducing it and only lowered the dose when I remembered. Fortunately it wasn’t as traumatic a transition as some of them have been.


150mg —> 100mg

Dropping from 150mg to 100mg, I noticed fairly quickly that my levels of anxiety were going down. At the very least, I had fewer periods of the paralysing, suffocating anxiety that short-circuit my brain, killing my ability to do anything at all. I also started to have more periods of general okay-ness. I wouldn’t quite describe my mood as good, but it definitely moving in a more positive direction than it had for a long time.

I was experiencing specific anxiety around the spread of Covid-19 but I figured that was normal for most people, especially those who already suffer from higher levels of anxiety or anxiety disorders. My as-needed prescription for Diazepam was helpful when it came to managing that, as well as taking precautionary measures.


100mg —> 50mg

I immediately suffered from side effects after this change. I had almost migraine level headaches that I could only manage by lying in bed in my darkened room. They remained at that intensity for several days before fading to a dull throbbing that painkillers took care of for the most part. I also had trouble keeping food in my system; I don’t think I need to go into any further detail on that.

I didn’t feel any different once the side effects passed but after a while, my Mum commented that I seemed less sleepy. I wasn’t convinced but kept an open mind and eventually I did think that I wasn’t feeling quite as drowsy. Part of that was down to the fact that I was drinking less Red Bull than I had been. That seemed to prove that I was needing less caffeine to function and was therefore feeling less sleepy.


50mg —> 0g

Again, I felt the side effects straight away. I had the same headaches although fewer of them and my digestive system also struggled. But with this reduction, I was also nauseous on and off for days and constantly shaky. It was very unpleasant and still hasn’t faded completely, even though I’ve been Pregabalin free for a couple of weeks. But maybe that’s been underneath the Pregabalin all along. I don’t know.

Aside from the side effects, my ability to sleep well disappeared overnight. I can’t be sure that it’s connected but it did start happening around the same time so I think it’s important to include here. I either wasn’t sleeping or having vivid nightmares that left me feeling disturbed and unsettled throughout the next day. I’ve read that this has been a common complaint during the pandemic so I’m thinking that it’s more to do with that than the Pregabalin however, it did start just as I finally stopped taking said medication. It seems unlikely that there’s no link at all.


Now, a few weeks later, I think it’s safe to assume that I’m no longer being affected by the Pregabalin or any withdrawal symptoms. Having said that I am still pretty sleepy and drinking at least one can of Red Bull a day, usually two. I still feel pretty weak and shaky, especially if I have to stand up or exert myself for more than about fifteen minutes. I’m also still sleeping badly with nightmares almost every night. It’s pretty gruelling.

I’m continuing to review the medication situation with my psychiatrist – although it is more difficult while we can’t have face to face appointments – and there are multiple options to think about. I haven’t decided what to do yet. We’re also continuing to investigate physical causes for my fatigue, although that has been put on hold by the lockdown. The restrictions are loosening but I’m not sure what that means for this situation. So, for now, all I can do is research and hope to make the right decisions when the time comes.

I’m Running Out of Clever Titles for Medication Reviews

A couple of months ago, I (with the help of my psychiatrist) decided that it was time to stop taking the Venlafaxine. I don’t feel like it’s helping; it just makes me numb to everything and, as overwhelming as my emotions tend to be, feeling is better than not feeling. It might not always feel like it but that’s the truth. Plus, the side effects are not worth it, even if it was helping: my concentration and motivation were pretty bad before I started taking it but I’m pretty sure it’s gotten worse, especially recently. Writing has been such a struggle, even the practice of it. My depression has always had a negative impact on my creativity but this is the first time I’ve found it so incredibly difficult to simply write at all: getting words out has been like pulling teeth.

So I had some good reasons for wanting to stop and I’d put in the time to make sure I had an informed perspective. So I discussed it with my psychiatrist and we decided that the right move was to wean myself off the Venlafaxine and try something new.

When I first reduced the dosage, I didn’t really feel the difference. I still felt both depressed and numb, which is a really weird combination. But over time that’s changed. Obviously I can’t know how much of that to attribute to the medication change or to life in general but I still think it’s worth keeping track and I recommend this practice to everyone: it allows you to see the trends in your life and analyse what does or doesn’t work for you.

Not long after lowering the dose, I started getting headaches. The pain was very similar to the pain of a migraine but I didn’t have any of the other symptoms that come with it. Normal painkillers didn’t seem to help much and there were several occasions where I just retreated to my bed and tried to sleep through it. I had one of those headaches almost everyday for about two weeks, which was horrible but they have now passed at least. So that’s progress.

Coming out of that, I felt really raw and emotional, which was very weird, having felt so blank for months. I felt like I had no control over my emotions, which was more than a little bit scary, and kept bursting into tears over the smallest things. It’s felt a bit like I’ve had all of my emotions bottled up since I started taking Venlafaxine and suddenly they were overflowing everywhere: if something upset me, I became inconsolable and if someone irritated me, I had the urge to scream at them. I feel very lucky and grateful that I’ve managed not to scream at anyone because that isn’t how I actually feel. Once that emotion has died down a bit and I’ve been able to process the whole experience, that’s how I really feel. I live in fear of saying something I don’t mean and it ruining everything. So far, I’ve managed to manage these emotional tidal waves. They’re still happening though, even now that I’ve stopped taking the Venlafaxine completely.

And more recently I’ve started to have moments where I can think more clearly. They don’t last very long and to begin with, they were so sporadic that I didn’t even connect them to coming off the medication. But now that there have been a handful of them, it seems pretty likely that the two are linked. These moments are amazing. The feeling reminds me a bit of coming up for air after being underwater for a long time. You breathe in and you can almost feel the freshly oxygenated blood rushing around your body; everything suddenly feels so easy and you’re shocked by how hard it was up until that moment. These moments aren’t lasting very long and I wish there were more of them but it’s something.

I realise that I’m not giving this progress the recognition it probably deserves but I’m really not in a place where I can be enthusiastic and optimistic; the most I can manage right now is one foot in front of the other. My depression is worse than ever but at least it’s real. And I’m doing the best I can. That has to be enough.