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.

Living in Lockdown

When I’m not spiralling into an anxiety-induced meltdown over the pandemic, the resulting quarantine, and (particularly) the thought of a loved one getting sick, I can look at living in lockdown in a somewhat detached, practical sense (something that has taken over a month to be able to do). Intellectually speaking, we’re living in unprecedented times, experiencing something that our parents are experiencing with us for the first time – something that very rarely occurs. There are very few people alive who have witnessed the last pandemic of this scale: the Spanish Influenza in 1918. So this is a big deal, one that will be written about in history books and studied in the future – from political, sociological, and psychological points of view to name just a few. I’ve been thinking about that a lot recently and I can’t help thinking how often history is told from the point of view of the powerful and how terribly, appallingly wrong that is, especially given the number of mistakes being made by the people in power during this period (I’m speaking from the UK but I think we’re all aware of the mistakes being made by other governments, especially that of the US). So, if we want that to change, we have to write it ourselves, write our own experiences of living in lockdown, both for the history books but also for our own sake, so that we don’t forget what this experience has been like and how our lives have been changed by it. And as true as it is that we’re all in the same position – all in lockdown with limited access to our families and friends, the world outside, and our ‘normal lives’ – each of us will be experiencing this differently so I think the more experiences written about the better. So here I am, writing about mine, both for the reasons I’ve already listed but also to keep from drowning in it all, in the anxiety and the fear and the attempt to keep going as if this isn’t a traumatic experience.

I was aware of the Coronavirus before it even moved out of China but it felt like such a horror movie scenario and caused me such anxiety that I worked really hard not to think about it too much. It seemed unlikely that it would get all the way to the UK so I focussed on the anxieties in front of me and got on with my life. Besides, surely the government would be prepared should it reach us, given how much warning they had. I didn’t vote for this government nor do I trust them but I assumed that their egocentric motivations would have them preparing the country as best they could, for themselves if not for their people.

But then the virus started to move from country to country and more and more people in the UK began to take the idea that it might reach us seriously. I battled with my anxiety around it, trying to act responsibly without thinking so hard about it that it sent me into anxiety induced meltdowns. To an extent, I felt fairly unafraid of getting the virus as a young, physically healthy person but having said that, I was very aware that I was in regular contact with immunocompromised people and I was terrified of getting it and passing it on to them. So I was careful to wash my hands, use hand sanitiser, and avoid busy areas and travel times where possible. My anxiety had already been high before the virus made the news so it was a daily battle, as it often is.

Then everything seemed to happen at once. One day I was making plans with a friend for later in the week and the next she was on a plane back to her home country because of the travel ban. I didn’t even get to say a proper goodbye (that’s my little bit of self-pity done because I know, without a doubt, that she made the right choice and I absolutely support her decision). Before that week of classes began, our course came together (electronically) and decided that we didn’t feel it was safe for us or others if we were travelling to and from uni, etc, so suddenly my weekly routine was gone, my education disrupted, and my friends were all going home, again without any of us actually getting to say goodbye to each other. I know we can all talk via social media and video calls and that this isn’t forever but depending how long this goes on, we may never come together as a course again and that is an idea I find really difficult to get my head around emotionally.

I think it was the next week that we went into official lockdown. My university pulled out all the stops to support us and within days, our classes had been moved online but prerecorded lectures and a forum aren’t the easiest ways to have discussions and a sudden lack of access to the library and facilities wasn’t an easy adjustment. I found the online classes difficult. Don’t get me wrong – I really appreciate how hard they worked to keep our education up to date and as normal as possible – but it’s not the way I learn best. It’s just a personal thing. It also made working on the assessment essay much more challenging. Fortunately, I had a tutor who was incredibly supportive and with his help (and my Mum’s), I managed to get it in with good time, despite the added stress and the impact that had.

The essay, despite the anxiety it caused me, was actually a good distraction. As soon as it was done and submitted, I really started to feel the effects of being in lockdown. After all, up until then, I was pretty much doing what I would’ve been doing anyway: spending all my time on my assignment. But with that done, it all started to sink in.

The most obvious struggle is that I miss and worry about my family. I have four parents, only one of which I’m living with, and the others are all on their own; my brother is living by himself in London; my Mum’s Mum is also living by herself, a significant distance from any of us, even if we were allowed to visit each other (I’m thinking more in the case of an emergency where we would obviously keep our distance from each other and be very careful); and I have multiple family members categorised as vulnerable. So I have a lot of people to worry about and worry about them I do. The constant anxiety is exhausting. And as grateful as I am for video calls, it’s just not the same. I miss BEING with them. I desperately miss HUGGING them. I try not to dwell on it – or stress about how much longer we’ll be separated – because that is only more damaging to my mental health but it’s hard. It’s really hard.

On a similar note, I also really miss my friends. We have video calls, regular calls, texting, social media, movie dates on platforms like Netflix Party, and so on but again, it’s not the same. It’s not the same as hanging out with them, or hugging them, or going on coffee dates, or having writing sessions. As I’ve already said, I’m trying not to think about how long it could be before I see them again. We’ll manage, thanks to the technology we have,  but it will be really wonderful to see them again.

The other thing that I’m really struggling with right now is my mental health.  For those of you who know me or have followed this blog for a while, you’ll know that, amongst other things, I struggle daily with anxiety and depression. These are the particular problems that have only gotten worse since the appearance of Covid-19 and the lockdown.

  • Anxiety is my constant companion, although fortunately I have my ’emergency’ medication (to be taken as needed) for when it gets really bad, like I-can’t-breathe bad. My anxiety rises to that level at some point most days and the medication has kept it about as manageable as I think I’m going to get in the current circumstances. But my anxiety isn’t constantly that overwhelming (at least not anymore) and I’m wary of going through the medication too fast so most of the time, I’m just left with this relentless pulsing under my skin that leaves me restless and unable to think as clearly as usual.
  • My depression has been really bad too. Some days are a complete write off from the beginning, where all I can do is stare at the TV. Most of the time though, my mood is better but more precarious. I feel like I’m walking a tightrope: one little knock and I’m going to plunge straight into the darkness. It feels like I have to constantly watch my step, be hyper aware of any possible threat to my mental health, otherwise I’ll fall and who knows how long it would take to build myself back up again, given the uncertain, scary times we’re living in. Maintaining my mental health in this period is like trying to build a house of cards of shifting sands. It’s practically impossible.
  • Since the lockdown started, I’ve had serious difficulty concentrating. On anything. Getting my university assignment done took more force of will than I knew I had and while I knew that I’d need some recovery time after that and after finishing an intense semester, weeks later my ability to focus hasn’t returned. I’ve had phases where I’ve struggled to focus (likely caused by my fluctuating mental health and trying different medications) but it’s never been this bad. I can’t read a book, I can’t watch anything, I can’t do anything without my concentration drifting. Everything takes ten times longer to finish and ten times as much energy, if not more.
  • Most distressingly for me is that my creative brain is completely dead. Out of power. It just feels empty and I have no ideas. I’ve suffered extended periods of writer’s block before and usually experience it to a degree along with the exhaustion of finishing a difficult semester and stressful assessment period but it’s scary to feel that it’s still not working, even after several weeks have passed. I’ve tried all my strategies for writing and all my strategies for writer’s block but nothing is working. It feels like my brain is broken and that’s really, really upsetting.

I’ve still been having therapy, but via Zoom instead of in person. In theory, it shouldn’t be that different but somehow it is. I’d never really considered how important it is to have a space to work through all the hard stuff and then be able to walk away from it, which you just can’t do when you’re having therapy in your living room. Plus, Zoom calls are exhausting – here’s a good article about that – which only adds to how exhausting therapy can be. Then, when it comes to the content of a session, it all feels a bit frozen: it’s hard to tackle difficult emotions when we’re in the middle of different difficult emotions. And when I’m just about coping, feeling so fragile, I don’t want to trigger something and make life even more emotionally difficult for myself than it is already. So the whole thing is really tricky and confusing. Having sessions is definitely better than not having them but it’s not straightforward. It’s not as easy as I thought it would be when we made the plan just before lockdown.

And just to add to that, I’ve been struggling with sleepiness as a side effect of my medication for months but that’s gotten a lot worse since self isolating (perhaps from the increased anxiety – I don’t know). I’m exhausted by the smallest things and I seem to need so much more sleep. And that hasn’t been helped by a sudden, intense bout of hay fever, which has bestowed upon me the additional symptoms of an itchy, blocked nose and sore, itchy eyes. It’s been so bad that even having the windows open makes it dramatically worse so going outside definitely hasn’t been an option (I can’t take antihistamines because of my other medication). So I can’t even go in the garden, making me feel all the more trapped. Inhaling steam helps but only for short periods of time. The recent rain has been a blessing, giving me several days of relief. I’m cautiously hopeful that it’s started to settle – I’ve managed a couple of trips into the garden without incident – but I don’t want to speak too soon.

And lastly, for now at least, I’m really struggling with how uncertain everything is, uncertainty having always been something that causes me anxiety. We don’t know when the lockdown will end, we don’t know when we’ll be safe again, we don’t know when we’re going to see our friends and family again. I don’t know what’s going to happen in terms of my university course. And so on and so on and so on. So on top of the ongoing fear, there’s nothing solid to hold onto. Many of my summer plans have become impossible or at least difficult, while some have been cancelled outright, which has obviously been very upsetting and left me without anything to look forward to or anchor me. I feel very lost. I’m sure that’s true for a lot of people at the moment. I try to focus on each day as it comes but it’s hard. We’re all so used to looking and planning ahead.

One more thing… I found this on Twitter the other day and wanted to share it:

I found it really helpful to have various explanations as to why I’m struggling, to know that my brain isn’t actually broken. Of course, knowing this stuff doesn’t actually fix the problems but being able to take a breath and reassure myself that there is a reason and that it won’t last forever has been helpful.

I hope you’re all safe and coping the best you can. And if you’re in the UK and they do loosen the lockdown this coming week, please continue to be careful. I hate being in lockdown but I’m absolutely terrified of what will happen if the government relax the rules, of how many more people will get sick and die. I’m scared out of my mind that someone I love will catch it. I can only speak for myself but I’m sure I’m not the only one with such fears. So please, please be careful. For all of us.

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.

IMG_5270

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:

7071D4BF-46A0-4A51-A9D0-FC35184967BC.jpeg

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.