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.

10 Things That Are Helping My Mental Health in Lockdown

I think probably most of us can say that we are struggling mentally in lockdown. I certainly am. I seem to be swinging wildly between overwhelmed, depressed, and anxious with no warning as to when the ground I’m standing on is going to change. It’s exhausting and kind of makes me feel sick all of the time. So I’ve put together a short list of things that are, if not helping, then managing my mental health in this emotionally turbulent time.


  1. Talking about how I’m feeling – I’m in lockdown with my Mum and talking to her about my anxieties and how I’m struggling with my mental health has been helpful, even if it can, in the moment, be really hard and make the emotions feel more acute. But after all this time, my Mum is very skilled at helping me with my mental health so when I get into such a state that I can’t think properly, she’s very good at helping me through it.
  2. Keeping a diary – I always keep a diary but I’m finding it particularly useful at the moment. Emptying my brain and getting all of my thoughts down on paper lifts a little of the weight I feel like I’m carrying. It just makes me feel a little bit lighter, like I can breathe more easily, and that’s invaluable right now.
  3. My cats – Obviously my cats have no idea that we’re in the middle of a pandemic so they’re just continuing to do all of their cat things: playing together, chasing bugs in the garden, playing with their toys, and sleeping all snuggled up together. It’s a good distraction and a very mindful one. Everything they do is entirely in the moment and it’s hard not to smile when you look at them, something I’m finding hard at the moment.
  4. Favourite Films and TV Shows – While getting sucked into a new TV show is a great distraction, I find that I don’t always have the concentration to keep up with new characters in a new world with an unknown storyline so I’ve been watching a lot of my old favourites, especially ones from my childhood. They’re familiar and comforting and distracting, making everything feel just a little bit less scary.
  5. Video calls with friends and family – I hate not being able to see my family and friends in person, hate not being able to hug them and just hang out with them for no particular reason other than just being together, I’m very grateful for video calling. I’ve spent a lot of time talking and catching up with my favourite people and although I sometimes find it draining (I think, to an extent, the level of video call use just serves to be a reminder of how different everything is), I’m just really pleased to be able to see them at all. I miss hugging though. I really miss hugging.
  6. Reading Fanfiction – As I said with watching films and TV shows, I’m finding it really difficult to get into new books. I just don’t seem to have enough concentration to stick with new characters and settings and so on. But a technique I’ve used for a while when it comes to anxiety is reading Fanfiction. I love that you can get so many new stories but with familiar characters and overall themes and story arcs. If you’ve ever felt like a book, movie, or TV show didn’t do a good enough job with a story or that they left out something really important or you see the characters in a completely different scenario, then I highly suggest looking into Fanfiction.
  7. Playing an instrument – I’ve spent a lot of time at the piano over the last couple of weeks. It’s something I’d hoped to do during my empty semester but coincidentally, it’s been really good for my mental health. I love the sound of the piano (I find the lower octaves especially soothing) but I also find that playing takes up all of my brain. I often sit down to play a couple of songs and then realise that I’ve been there for over an hour. Learning new songs and figuring out new chords and progressions just pushes everything else out of my head. It’s a nice break from reality.
  8. Time away from social media – I’m definitely guilty of spending too much time on social media at the moment, terrified to miss out on important information (I absolutely do not trust the government to be giving us the full story, ever really but especially right now). But that’s leading to a lot of fear spirals so I’m trying my hardest to spend real time away from my phone and social media, checking it once a day at most. It’s complicated since part of my job involves the use of social media but with the disruption to the music industry at this time, I’m not too worried about that right now. My mental health has to be my priority.
  9. Decluttering – This is another thing I’d hoped to do during my empty semester and, depending on my mood, it’s not always possible but when I do feel up to it, I’m finding that going through my things and creating space in my room seems to create space in my life and my head too. I can’t do it for long periods because I start to experience decision fatigue and get really indecisive but creating order and having some control when I feel so out of control has been both satisfying and soothing.
  10. Preparing for my next university module – Something I was worried about before the pandemic was being prepared for this next module in my Masters degree, which involves a level of musical theory that I’m not sure I’m comfortable with at this point. So I’d wanted to do some work on that and my attempts at this have actually been good for my anxiety: focusing on a completely separate anxiety has been a good distraction and preparing for a future post-pandemic has been good for my mental health too. It helps me remember that this isn’t forever.

It’s also worth mentioning that I have an anti-anxiety medication that I take as needed, which is pretty much all the time right now. My psychiatrist is aware of this and supports it. This has been hugely helpful and has halted many a panic spiral for which I’m really grateful. Being constantly overwhelmed by anxiety is exhausting and only makes it harder to cope with everything going on.


As I said, I don’t know if these things are helping or just maintaining my mental state but honestly, I think the only thing that’s really going to help my mental health is life returning to somewhat normal: being able to continue our lives and do the things we love to do without a thick fear of being infected. I want to feel safe again. I want to hug people, go back to university, go back to the gym. Maybe I’ll write a post about all the things I want to do when it’s safe again.

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Living with Autism During a Pandemic

I know that everyone is talking about this right now and I’d rather not because it makes me so anxious but there are a couple of things I want to say and then hopefully this blog can go back to being a Coronavirus free zone. I know it’s scary for a lot of people and there’s a lot of information and advice being thrown in your face so I just want to document my experience so far and write about the things that are helping me to minimise my anxiety.

I think the first thing to say is that I hate change, as I know many autistic people do. I especially hate sudden change because it gives me no time to process what’s going on, which causes me a lot of anxiety. It also messes with my emotions, leaving me feeling unsettled and sick and empty and twisted up. I can’t really explain it properly; it’s such a specific feeling.

The first big thing to happen was Tin Pan South, the festival we were going to Nashville for, was cancelled, which meant we had to decide whether or not still to go as it could be more expensive to cancel our flights. But as the news from other countries got more serious, we decided that we didn’t want to go and get stuck there so we had to make the difficult decision to cancel. I was gutted. I am gutted (we were supposed to be flying out today). I was so looking forward to the trip and to the festival that, not only was the change stressful, it was very distressing too. And then, of course, there was the stress of getting the money back. With the travel ban, we have since managed to get everything refunded or in credit but it was incredibly stressful, in addition to all the stress coming from the news about the virus. I have family who would be in serious danger if they caught it so, even though I’m in much less danger, I was  terrified of unknowingly transmitting the virus to them. I still am so we’ve all been self isolating apart from essential trips like picking up extra medication and so on.

And then, suddenly, everything started happening. All of the concerts I was going to got cancelled, which isn’t a big deal in the grand scheme of things but they are the bright spots in my life that get me through when I’m in a bad place, which I arguably am right now. So that’s been difficult, especially the suddenness, as I mentioned earlier. Then one of my best friends was suddenly on a plane home, which was very upsetting (although, of course, I understand and support her in wanting to be with her family); one minute we were making plans for the next day and the next she was messaging me from the plane. That change has been hard and I’ve cried a lot about it. Plus, just as I’ve  started to get into the groove of going to therapy again, we’re having to switch to video sessions, which I thought I was fine with but turns out I’m struggling with. And then there’s just all the not knowing what’s going to happen or how long this is going to last. So there’s been a lot of change really fast.

I actually feel quite traumatised by all the changes. Stuff like this always messes with my head and with my emotions and I end up feeling like it’s causing brain damage, like parts of my brain are being permanently warped and will never recover.

The week after all of these changes happened (most of them happened over the weekend and into the Monday), I wasn’t going to go to uni. Many of my friends and classmates weren’t going, having gone back to their families abroad and within the UK, and I just couldn’t bear to be there and see it without them all with so little time to adjust. I just felt so unsettled and restless and anxious. I don’t think I’d’ve been able to concentrate if I’d been there.

My course discussed it through our WhatsApp group (we’re a small course) and ended up emailing our programme leaders to say that we didn’t feel safe and that we didn’t feel it was responsible for us all to be there, to travel in on public transport, and so on. Very few people went to the classes and I think it was later that day that it was announced that the course would be moving to online classes. I’m yet to see how smoothly that goes. They’re not moving our assessment deadlines, which many people are very upset about, something I definitely understand. There are a lot of reasons to feel an extension is necessary. My mind changes from hour to hour; I don’t know whether I’d want an extension. Yes, there’s massive anxiety affecting my life that makes it hard to work but at the same time, we don’t know how long it’s going to go on for and I’d rather just get the assessment over, if that makes sense. I don’t know. I don’t know what I want.

Me and my Mum – my household – are self isolating, apart from necessary trips out (getting the necessary supplies to stay in, getting supplies for the cats, getting what we need to allow us to work from home, and so on – making it possible to self isolate for as long as we need to). It’s weird: I usually spend days at a time inside but suddenly I’m really claustrophobic and restless and anxious and it’s been less than a week. I don’t know where that’s coming from. Maybe I’m just so full of anxiety that everything is making me anxious.

So, having said that, I wanted to list for you a few of the things I’m doing to try and minimise my anxiety:

  • Keep a routine – I’m not talking about being really ambitious. If you’re like me and you struggle with Autism and/or mental health problems, diving into a really ambitious schedule just means I end up crashing and burning and then feeling terrible. So when I say ‘keep a routine,’ I’m talking about the little things. I’m talking about getting up at a reasonable time, showering, remembering to eat, getting fresh air (even if it’s only opening the windows and getting out into the garden, if you have one)… Things like that. Yes, it’s motivating to be productive so if that feels possible, go for it, but it’s also important to be gentle with ourselves during a time of such great stress.
  • Keep to a regular sleep schedule – With nowhere to go (if you’re self isolating), it’s easy to just stay in bed, get up late, and then end up going to sleep at four in the morning. It’s really, really easy. But I’m trying to go to bed at my normal time and get up early, like I do everyday. It’s much better for my mood than if I stay in bed for hours. A regular sleep schedule is actually proven to reduce stress, help you to avoid getting sick, help you think more clearly, and a multitude of other things, all useful at a time like this.
  • Stay on top of my medication – This is a fairly obvious one but if you take medication, make sure you’re stocked up and that you take it diligently. I take a regular antidepressant, a regular anti-anxiety, and then I have an anti-anxiety to take as needed. And, as you can imagine, I’m needing it a lot right now. So I’m constantly listening to my body so that I’m aware of when I need to take it as early as possible, so that I avoid the unnecessary anxiety. Of course, there’s huge anxiety going around but there’s also anxiety that we don’t need to feel and if we can avoid it, then I’m all for that.
  • Start and end the day with something calming – I’m dealing with a lot of anxiety (as we all are) so I find it helpful to start and end the day with something that relaxes me. For me, this is usually writing my diary because it empties some of the stuff out of my brain and helps me feel like I’m not trying to hold onto so much. It’s all safe, but I don’t have to actively hold it in my head. So letting some it go is like being able to breathe deeply again.
  • If the news is too much for you, ask someone in your support system to keep you up to date on the important announcements – My anxiety has always been triggered by the news and it’s even worse now so my Mum listens to it, filters out all the noise and fear and things I don’t need to know and gives me the important, relevant information. This has been so helpful since there’s been so much confusion and misinformation and fear mongering. If this isn’t possible for you, check your national news once a day and then try not to look at it again. Because there isn’t as much information as there is news time, there’s a lot of speculation and opinion and it doesn’t do any good to get sucked into that spiral if you’re already really struggling with anxiety.
  • If you have to work or study, try to do it in manageable chunks (which will be specific to you) – As I’ve already mentioned, I still have an assessment deadline. I still have an essay due. So, even though I’m really struggling to focus because of all the anxiety (which means it’s taking so much longer than it normally would), I’m trying to work on it everyday so that it doesn’t pile up and so I don’t end up overloaded and overwhelmed (it hasn’t helped that I’ve had multiple problems with my laptop in the last few weeks). It’s hard, especially since it’s now much more difficult to get help with it, but hopefully the slow and steady approach works.
  • Indulge in simple things that improve your mood – This is not a trick question. If there’s something simple that makes you feel better, let it make you feel better. Some of the things that boost my mood (even temporarily) are having the fairy lights on, burning my favourite candle, spending time with my cats, watching my favourite movies and TV shows… You’re allowed to feel good, to try and feel okay even in the face of this big, scary thing and if something really simple does the job, then go for it.

If there was ever a time for looking after yourself mentally (and obviously physically), it’s now. I hope some of these tips are helpful and let me know if there’s anything that you find helpful in stressful times such as these. As I said at the beginning, hopefully this blog can go back to being a Coronavirus free zone after this post because I know it’s triggering for a lot of people, myself included. But if I find any helpful resources for getting through this, I’ll definitely share them because I figure we could all use all the help we can get.