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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Some ‘Interesting’ Medication Experiences

I’ve now been taking various medications for four and a half years. It’s been a very mixed experience but through it all, I’m an advocate of medication because when we get it right, it’s incredible. A whole new person emerges, a person you’d forgotten you could be and that is the most amazing experience. It’s the closest thing to freedom that I’ve ever felt. But during that time, there have been a number of interesting and strange experiences. I don’t know if reading about them will be helpful to anybody but all of this stuff can be so scary if you think you’re going through it alone. So I’m putting it out there, just in case.

Venlafaxine withdrawal

I’ve written about this before but it makes sense to include it here as well. Because of several very busy days, I forgot to take my Venlafaxine and accidentally went into withdrawal. It started with an almost debilitating headache and on day four I woke up unable to think clearly. I couldn’t hold on to a thought: they were moving so fast that it made me feel dizzy and sick. On my Psychiatrist’s advice, I resumed the medication and I started to feel better pretty quickly although it took about a week before I felt like myself again.

Too much Pregabalin

At one point, I picked up my prescription and didn’t realise that the pills were at different doses than the previous prescription had been. So when I thought I was taking 150mg, I was actually taking 450mg. I woke up the next morning feeling shocking: I felt like my head was filled with cotton wool, the ground was moving under my feet like ocean waves, and my legs and hands kept twitching. It was awful and because I wasn’t aware that I’d changed my dosage, I was really freaked out. I ended up at the out of hours doctors because both me and my family were so worried. They didn’t find anything serious so we were left to wait and see but then my Mum realised what had happened. So that was a scary experience that I have no desire to repeat; I’m much more diligent about checking these things now.

Obsessive eating with Amitriptyline

Almost from the moment I started taking Amitriptyline, I was obsessed with eating, constantly thinking about what I could eat next, what it would taste like, what it would feel like. It was very much about the sensation of eating rather than being hungry. And the higher the dose, the more I wanted to eat. It was all I could think about. Seriously. I couldn’t think about anything else; I couldn’t function. It eventually caused me so much anxiety that I had to stop taking the Amitriptyline and try a different medication. I’d lost a lot of weight while on previous medications but I gained it all back while taking Amitriptyline and I found that very stressful and upsetting.

Taking Diazepam with Redbull

During a period of particularly high anxiety, I was taking Diazepam regularly throughout the day. The anxiety lifted but what was left was this overwhelming tiredness and sleepiness that had me falling asleep in the middle of the day, sometimes mid sentence. So I started drinking Redbull to keep myself awake and functioning. It wasn’t until a few weeks later – when I used Redbull to wash down the Diazepam – that I realised that it was the Diazepam that was making me so sleepy and that this was not something I could continue to do (not that Diazepam had ever been a long term strategy). I’d been taking it to ease the transition between medications and fortunately my anxiety started to go down and I didn’t feel the need to keep taking it.

Running out of Pregabalin

At one point, I ran out of the 225mg capsules, which didn’t seem like a problem because it was less than a week until my next appointment and we still had a load of Pregablin pills from earlier prescriptions, when we were still trying to get the dosage right. But then we realised they were 50mg capsules that you couldn’t split in half so I wasn’t going to be able to take my full dose of 225mg. I’d have to take 250mg or 200mg and the safer course was the latter. So I did several days on 200mg with pulsing headaches to remind me exactly why you take the exact amount you’re prescribed.

Too Much Magnesium?

This is speculation but not long after I started taking a Magnesium supplement, my mood seemed to nosedive. I’d been doing pretty well and was actually having bursts of what I think was happiness and so I’d felt able to add the (nutritionist) suggested supplement into my system. Nothing happened straight away and taking it became a habit but then depression started to creep in again. The only thing we could attribute it to – the only change – was the addition of the Magnesium. I’ve always been incredibly sensitive to stuff like this (I once threw up moments after taking a different supplement because it had too much copper in it) so I stopped taking it and within a couple of weeks, I felt more like myself.

Twitching on Pregabalin 

The one real side effect of taking Pregabalin – in my experience, at least – is that it causes twitching, mostly in my legs but sometimes in my hands and arms too. It’s very disconcerting to not feel in control of my body and I really, really don’t like it. But as of now, Pregabalin is something I need to get through the day. It helps me manage my anxiety but if another option became available, I would jump at the chance to change, even with all the potential problems of switching medications.

I hope I haven’t put any of you off medication. These experiences weren’t fun but as I said, getting it right is worth it. At least I hope so.

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My Personal Warning Signs of Depression

In a recent therapy session, my therapist and I were talking about this latest depressive episode and what I’ve learned from it. Because I’ve learned A LOT. I’m not ‘un-depressed’ yet but coming out of it a bit has given me a new perspective on it, on my depression and how it affects me. Hopefully that perspective will be helpful to me in the future. Because depression can creep in very slowly, you don’t always notice the signs but in hindsight, there are a handful of things that should be red flags in my mind. Maybe being aware of these things can help me prevent the depression getting as bad as it did this time.

  • Unable to write songs – I don’t mean a bit stuck. I mean a continued inability to reach the level of functioning necessary to write songs. Songwriters, do you know what I mean? I know exactly the feeling I mean when I write this and although it does sometimes come out of nowhere, it is the biggest sign that depression is creeping in again. It’s very distressing to be unable to do the thing I love the most.
  • Losing my excitement – This was something I didn’t realise was gone until it returned. I’d get excited about things in theory but I assumed the dampened emotional response was just part of the depression numbness. But since I’ve started to feel better, my excitement has resurfaced about as dramatically as a volcano. It’s fun but a bit disconcerting. So, in future, if my excitement seems to have gone AWOL, I know that it’s a potential sign of depression.
  • Overwhelming anxiety about the future – I am always anxious about the future so this is a tricky one but when it becomes overwhelming and it feels like more than I can cope with, than I could ever cope with, and it goes on for an extended period of time, it’s a symptom of my depression.
  • Feeling hopeless – Similar to the previous one, feeling overwhelmed by hopelessness is a real sign of a depressive episode. It feels like everything inside me has stilled, like there’s a new, sharp clarity to everything. Everything becomes very simple and really pointless. We all feel hopeless now and then but when this feeling doesn’t pass, I know I’m in a depressive episode.
  • Increased suicidal thoughts – This one is the final straw, the most telling sign. I’ve always felt very strongly against suicide so when these thoughts start to filter into my everyday thinking, I know I’m in trouble.

There are symptoms common in everyone – like low mood, fatigue, low self-esteem, and so on – but these are my personal warning signs. Do you know what yours are? Are they similar or different?

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The Next Chapter in the Medication Chronicles

Just over two months ago, I finally stopped taking Amitriptyline and started taking the new medication I’d been prescribed, Clomipramine. I’d had the prescription for over a month but I just hadn’t felt able to start taking it: I felt so drained and so worn down by what felt like an endless train of medications that made me feel worse instead of better. And on the off chance that it worked, I didn’t feel ready to feel ‘better.’ It’s hard to explain but it felt like I’d physically feel better – chemically happier – but still have all these ‘depressed’ thoughts, a juxtaposition that I did not feel strong enough to cope with.

But on this particular night, I felt a little more steady and so I took advantage of that: I stopped taking the Amitriptyline and started the Clomipramine. I felt different almost straight away; it took less than a week. I felt physically lighter, like a fog had lifted, a fog that I hadn’t felt settle. It was disconcerting – I felt a little bit like I might just float away – but it felt good too. It felt cathartic.

Suddenly, I was excited again. I was excited about pretty much everything, from swimming and playing with the cats to bigger things like future writing sessions and far away holidays. I hadn’t realised that that was something that had disappeared. I’d been excited about things in theory, in the way I thought about things – I could recognise that something was exciting. But I wasn’t actually feeling it. So to have it back was exciting in itself. It was amazing and I savour the feeling every single time it appears.

The most exciting thing is that my creative brain woke up and started firing again. It’s like my depression completely suppressed my creative brain and so I was physically unable to write songs, to function at the cognitive level necessary to write songs. I wrote about this in a post a few weeks ago. I’ve got several writing sessions coming up which I’m really, really excited about so I’ll keep you guys updated as to how they go.

I’ve also been taking Pregabalin – for several months now – to manage my anxiety. It has reduced my anxiety to a degree but I’m still dealing with A LOT of anxiety, so I need to talk to my psychiatrist. But it has helped. Unfortunately, it hasn’t been side effect free: I’ve been experiencing muscle twitches, mostly in my legs but sometimes in other parts of my body too. And it’s gotten worse as I’ve increased the dosage. That can feel quite scary, to not be in control of your body… I’m in the process of trying a new anti-anxiety, Flupentixol. It doesn’t seem to have had much of an effect so far but I’m trying not to lose hope.

The excitement and the giddiness have faded a bit since the initial boost. I’ve had a pretty bad week: my depression got overwhelming for a moment there. I’m coming out of it but it was pretty scary and I still feel quite shaken by it.

So that’s an update on the medication front. As per usual, it’s been a bumpy road but things are better than they were and for that, I’m really grateful.

2018 in Review

This year has been a struggle. Almost eighteen months ago, I made the decision to change my medication and that has basically been my life ever since. Lots of pills and doctors appointments but mostly dealing with the side effects, everything from nausea to shaking to a complete inability to think clearly. I don’t think I realised what a huge undertaking it was going to be but it’s not exactly surprising: you’re throwing all the chemicals in your brain and body out of whack. I tried Venlafaxine, Lithium, and Lamotrigine; I weaned myself off Venlafaxine, tried Amitriptyline, and now I’m taking Pregabalin and Clomipramine. This is the most promising combination so far and I’ve actually had a few really good days so I’m cautiously optimistic. But it’s been a long, hard road, sometimes so difficult that I wasn’t sure I’d survive it. And I don’t really feel able to acknowledge the good bits without paying tribute to the really tough things I had to go through and so got through.

The first of The Big Difficult Things was moving house. God, that was a struggle. Having thought that I’d found some sort of peace around it, when it came to the day, I was absolutely devastated. There were a lot of tears – from all of us. That house was my home for fifteen years – home to the greatest triumphs and tragedies of my life – and so, to some extent, it will always be my home. I think I could probably walk into my old bedroom twenty years from now and fall right back into that old rhythm.

I’m still learning the rhythms of the new house. There are days where it feels normal and then others where I hate it so much I could scream. Most of the time, it still feels like someone else’s house. Someone else’s house with all our stuff in. But every day is a step in the right direction. We’re filling all the empty space with memories, slowly but surely.

I’ve been writing a lot about Claire Wineland of late but I couldn’t write about this year and not mention her. Her death was another of The Big Difficult Things of this year. I stumbled across her YouTube channel late last year and have been following her on social media ever since. She was – and still is – a big inspiration for me and her death hit me really hard. It just makes no sense to me and never will and I’m still struggling to cope with that.

And through all of this, depression has been my constant, oppressive companion. While I had experienced depression before, this was a whole new kind of prison. The lows were lower than I’d ever experienced and there were several pretty scary moments. And as well as affecting my mood, my depression made it almost impossible to write songs. I’ve had many discussions about writer’s block over the years and I’ve always thought that there are things that can make writing difficult and so you have to figure out what’s causing the block and address it. In my case, it feels like depression suppresses the creative part of my brain: I don’t get random sparks of inspiration, I can’t solve problems creatively, and any active creativity – like songwriting – is like pulling teeth. It feels like writing songs requires a certain level of functioning that I’m just not capable of reaching while depressed. I want to write more about this – about depression and writer’s block – but that’s for another post.

Having said all of that, there have been good days, as well as good experiences on bad days.

By far the best part of this year has been the time spent with my friends and family, whether that be online or in the physical world, in Nashville, London, or Brighton. Or anywhere in between. These people have kept me going through the hardest period of my life so far and I’m so ridiculously grateful to them for that.

I got to travel a little bit this year, which was amazing. I managed to get back to Nashville where I had the most intense ten days possibly of my life. I got to see some lovely people, write songs (or try to), listen to some of the best songwriters in the world, and play a Song Suffragettes show. Even though I was incredibly anxious about it, that may very well have been the best day of my year.

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I also travelled to Iceland for the first time and saw so many beautiful things, including a 60m waterfall, the Diamond Beach, and the Northern Lights. The natural scenery in Iceland took my breath away time and again. It felt like the first breath you take after being underwater. Of course, there was a lot of anxiety during the trip but it helped me in a way that only the magnificence of nature is able to.

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There have been more wonderful live music events than I can count: Paramore, Kelsea Ballerini, Sugarland, Kacey Musgraves, Natalie Hemby (and all of Tin Pan South in Nashville), Frank Turner, Betsy Lane, The Shires, Sinead Burgess, The Brummies, Halsey, Kina Grannis, Aislin Evans, Maren Morris, and of course, Taylor Swift. Despite the anxieties around concerts, these are the places where I feel most alive and so, throughout this difficult period, I’ve always tried to ensure that there was another concert to look forward to.

And despite my musical struggles this year, I’ve actually played a few gigs and played shows that I am so proud to have been a part of. I got to play with WRTW again and it was even more fun than the first time (if that’s possible). I played Autism’s Got Talent in London, which was such a great opportunity. I played for Brighton Soup and Disability Pride in Brighton, two amazing organisations that I can’t praise enough. I also played Summer Fest in Worthing, my first show with my awesome friend, Richard Sanderson. And of course, I got to play a Song Suffragettes show when I was in Nashville.

I’ve also managed to do a handful to Autism research studies, as well as giving blood. I’ve been feeling so useless so I tried to contribute as best I could during this time where I’ve felt incapable of contributing anything at all.

Another big part of this year was getting used to the kittens: my cat had two kittens in February and me and my Mum just fell in love with them so we ended up keeping them. I love them dearly but it has been a major adjustment and a real struggle, especially with the daily battle that is depression. So this has been both a good and a bad thing. I want to write more about this whole experience because there were – and still are – a lot of complicated emotions involved. But above it all, we have Lucky and Lucy and the kittens and I love them more than life itself.

So, that’s it: 2018. It has been a hard, hard year, and one I’m very happy to leave behind but I’m cautiously optimistic about the next few months and the next year. I’ve felt better in the last couple of weeks than I have all year and I’m hopeful that this is characteristic of what’s to come.

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“2018, the year of living, fighting, but ultimately, surviving depression. There was a lot of gold in the grey but I’m so ready to move on to 2019.” (x)