Finding HopeReducing and Coming Off Pregabalin
Posted on June 27, 2020
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.
Mass Observation – A Day in the Life of UK Lockdown
Posted on May 13, 2020
On the 12th of May every year, the Mass Observation Archive asks people to keep a diary for a day in order to capture the everyday lives of people all over the UK. This year, 2020, is the 10th anniversary but we are also living in the midst of a global pandemic, making this year a unique one, to say the least.
I’m a dedicated diary writer and have been for years so this is the ideal project for me. I love the idea of so many people’s experiences in one place, the idea of collecting as many versions of one day as possible and trying to build the fullest picture of it. So I was very excited to take part in this day, even if I’ve recently been floored by one of the most awful periods of depression I’ve ever experienced.
Some important things to know before reading this: I am autistic, struggle with depression, anxiety, OCD, and Borderline Personality Disorder. All of the symptoms get worse under stress. I’m halfway through a Masters Degree in Songwriting. I’m really struggling with the Covid-19 pandemic (particularly when it comes to my anxiety, with the fear that my loved ones will get sick), self isolating with my Mum, separated from my three other parents, my brother and my friends.
I slept badly, waking up at eight with my alarm. I’ve been trying to keep to my pre-lockdown routines and on a normal day, I would’ve gotten up and got to work on something but I had a throbbing headache, probably due to the restless night. So I buried my head under my duvet and tried to hide from the light coming in through my curtains.
Being a part time Masters student means I have an empty semester from yesterday until the end of September and I had all of these plans: practice the songwriting skills I’ve learned this year, establish a recording space at home, and get back to swimming, to name a few. But then the pandemic happened and we went into lockdown and all of my plans went out the window. I’m terrified all the time. Everything feels pointless. I can’t focus on anything. And my creativity – my ability to write songs – feels completely blocked. I’m stuck in this frozen state and I just feel like I can’t breathe. I feel like screaming and crying and hyperventilating but I feel like if I start, I’ll never stop. But even distracting myself is hard. I just can’t make myself care about a TV show or whatever. It all feels too big, like there isn’t enough space in my brain for anything other than this howling fear. And this has only been made worse by the government’s most recent, incredibly unclear statement about easing the lockdown. The idea that the government think this is acceptable when hundreds of people are still dying every day makes me sick with fear. I didn’t vote for them but I at least thought they cared about the people they were governing.
The only thing that I’ve found actually helpful in distracting myself is reading fanfiction. It’s something I’ve found effective as a relaxation technique over the last year, dealing with my wildly fluctuating mental health, starting my Masters, and this pandemic. It’s easier than reading a book because I’m already familiar with the worlds and the characters, which is a relief when I’m constantly exhausted by all this fear. Escaping into a comforting world is just that… comforting. So I spent several hours doing that, reading through old favourites from my teenage years when I first discovered fanfiction. It just gave me a break from everything. As much as possible, anyway.
Eventually though I got up and went downstairs. I thought that maybe working on one of my anxieties would help my overall level of anxiety so me and Mum went out into the garden to do some filming for a music video. My original idea is now impossible with the lockdown, which has been very upsetting because I was really looking forward to it, so I’m having to come up with something new, something that’s been difficult and frustrating because the original idea felt so perfect. I’m not super happy with the current back up plan but I need something. So me and Mum spent several hours filming [I’m omitting some bits here because I don’t want to give away the video if this is what we end up using]. I have absolutely no energy at the moment so I was completely exhausted by the end of it, even though I don’t feel like I actually did that much. I ended up falling asleep in the comfy chair in the kitchen, sleeping for a couple of hours.
I woke up, stiff and uncomfortable and just as anxious. Apparently trying to work through an anxiety didn’t help. Maybe I didn’t solve that anxiety, maybe all of this is just too big.
I had a shower and then settled on the sofa in the living room. There are so many things that I could be doing with my time but I just don’t have the motivation, the emotional energy. I just can’t see the point – what does any of it matter when hundreds of people are dying everyday, when people are losing loved ones, drowning in unbearable grief? It’s in moments of quiet that these thoughts overwhelm me and I feel my throat start to close up.
I dived back into fanfiction until dinner snuck up on me. Me and Mum ate in front of a Lucifer rewatch – for some reason, it was the only show that didn’t make me want to scream. We watched until we were both falling asleep, until the cats were crawling all over us for their pre-bedtime snack (otherwise they do their level best to wake us up at five in the morning). So we fed them and headed for bed.
It’s hard to admit – maybe because I’m twenty five and feel I should be stronger than this – but I haven’t been able to sleep without my Mum with me for weeks now, possibly longer. All of my mental health stuff is worse at night, particularly my anxiety. It just builds and builds until I’m in a panic attack or worse, a full autistic meltdown. Having my Mum with me, feeling her heartbeat and hearing her breathe, makes things just okay enough to fall asleep, although sometimes it takes a sleeping pill too.
If you’ve been keeping a diary or still want to jot down some thoughts about yesterday, I really encourage you to do so and send it to the archive. The page is here, in case you’d like to submit or learn more about this and their other projects.
Finding Hope 