Altered States - Part 4: Help

This is the fourth instalment of a 9-part blog series written by Rob.
Trigger Warning: contains references to: psychological distress, sensory issues, out of body experiences and health anxiety.

The way it began, paired with the non-stop headaches and physical symptoms, like ears popping and feeling wobbly, made me initially assume this was all something mechanical. Maybe I’d put a crick in my neck, some kind of mini-stroke or a nerve signal wasn’t quite connecting the way it should in my brain. Surely the right physical therapist could fix it?

I started by seeing a headache specialist physiotherapist, as that felt like the biggest and most immediate issue. Over time, the headaches did improve, but I still didn’t feel entirely in my body or like I was experiencing the world the way I used to. Something still needed fixing.

Around this time, I also started seeing at first a counsellor and then a psychotherapist, as I was very aware things were all getting a bit much for the ol’ mental health. First, it was all the medical fun and games and needing operations, then it was the toll it was all taking mentally. It turns out very common aftereffects of any kind of heart surgery are low mood, depression, anxiety and grief. There’s something pretty profound about entrusting the one thing that literally gives us life and keeps our blood pumping, into the hands of a stranger. No one thought to warn or prepare me for that sadly.

I occasionally suffered from aura migraines over the years which are a pretty odd thing to experience and as my ears, neck and head all seemed to be interlinked with the derealisation, my next logical thought was to see an ear, nose and throat specialist. But he said everything was fine as far as he was concerned. So that ruled out anything connected to my ears, nose and throat as a cause.

Next step was my brain, as if there wasn’t anything physical, it must be either brain mechanics or brain chemistry. So I saw a neurologist. He ordered an MRI which came back as normal. He felt what I was experiencing may have be some kind of unusual, atypical persistent migraine. His first suggestion was that I try taking a fairly healthy dose of something called ‘gabapentin’ which I’d never heard of. I’m reluctant to take medications that aren’t 100% needed, so looked into it first. Turns out it can be quite a strong anticonvulsant, sedative and nerve medication and I really didn’t want to lose any of my remaining cognitive faculties, while still trying to work out what the hell was going on.

I then thought I’d try something a bit alternative, so went to see a chiropractor who had a slightly less clinical approach to my issues and thought it could all be fixed with time, some very gentle manipulation, some light ‘swooshing’ of their hands gently on my back and quite a large sum of money.

All the time I was experiencing this and trying to see specialists who may be able to diagnose and ‘fix’ the issue, my close family and I were doing research, trying to find any clues out there as to what I may be experiencing and what may be the cause. I was trying not to read too many medical texts though, as the more I read, I would assume the worst and attribute yet more issues to myself.  

One clue we came across that seemed to have some crossover with what I was experiencing was issues with the ‘vestibular system’. I’d never even heard of this before but according to Wikipedia its ‘a sensory system that creates the sense of balance and spatial orientation for the purpose of coordinating movement with balance. Together with the cochlea, a part of the auditory system, it constitutes the labyrinth of the inner ear in most mammals’. It certainly sounded like it could be the cause, so figured ‘what the hell, let’s find one of the country’s leading neurology and vestibular experts and see what he thinks’. Lovely chap, some of the weirdest medical tests I’ve ever been subjected to (basically blindfolded waterboarding of the ears which really messes up your balance and coordination) but ultimately everything as far as he was concerned was perfectly well. The one thing he did talk about, that few others did was just how much I’d been through recently and the mental stress it would likely be causing. Although this eminent professor didn’t use the terms ‘depersonalisation’ or ‘derealisation’, he felt what I was experiencing could be stress, anxiety or trauma related and could be a mental health or neurological disorder.

This was all costing money. And quite a lot of it. I’m lucky to have a fairly well-paid job, health insurance and understanding employers, which meant I could follow all possible leads and explore possible causes. But I’m very fortunate to have all that. Many people don’t. From the people I’ve spoken with who also experience DPDR, I’ve learnt that for many of them its been years, if not decades before they’ve had any kind of diagnosis or understanding of what they’re going through.

I was still functioning. I was still able to work most of the time. I was even still able to exercise, socialise, go on holiday and all those things I normally would. It just never felt like I was quite ‘in the room’ or experiencing the world the same way I used to.

The small glimmer of light came about 5 months after the change in perception first kicked in. My mum had been diligently doing her own research and came across a podcast where depersonalisation and derealisation were mentioned. She, like me had never heard of it before, but there were a few key clues that this may be linked to what I was experiencing. The people on the podcast were saying many of the same things I had been - looking in mirrors felt weird, they never felt quite connected to reality, the world around them felt different, their bodies felt disconnected from their minds, they felt spaced out or drunk.

I didn't want to get my hopes up, but It felt like I may not be the only one who was going through this.

For the first time in months, I started to experience a flicker of hope. Hope that I wasn't having some kind of endless psychotic episode, that I wasn’t trapped in the matrix or just going good old fashioned bonkers.

The more I read and the more podcasts I listened to about depersonalisation and derealisation, the more the pieces of the puzzle seemed to fit together. I still didn’t know what it all meant, but at least there might be a name for what I was feeling and going through. And the various clues from other peoples experiences started to potentially explain why this had happened to me.

I quickly tried to absorb what I could about what seemed to be known as ‘depersonalisation’ or ‘derealisation’. There definitely seemed to be a lot of common symptoms and similarities and I felt like I’d exhausted all the other possibilities. I found details of psychologists and specialists online, including London’s NHS Maudsley Hospital, which had a specialist depersonalisation disorder clinic and expertise on what I was now learning are known as ‘dissociative disorders’.

The SLaM (South London and Maudsley) mental health experts and service seemed to be the people who might be able to help me or hopefully explain what I was experiencing. The challenge I faced was that SLaM are part of the National Health Service or NHS, an amazing public service which has cared for me all my life, but one which has been criminally torn apart by a number of conservative governments. The lack of funding and resources has meant that medical facilities and practitioners are massively overstretched and the people most desperately in need, just can’t get access to the services that could help them. Politics aside, trying to see the team at SLaM, the one glimmer of hope I’d found so far, would potentially take me months of referrals and waiting lists. And there wasn’t actually any guarantee I’d even get to speak with anyone who could provide me treatment and support due to them being hugely in demand.

Luckily I was able to access some private medical resources and was given contact details for a Consultant Clinical Psychologist, who was associated with SLaM. Google quickly informed me that this Doctor was one of the UK experts on dissociative disorders, so that was my next call.

After one intense and emotional session with my newly found Doctor, they was pretty certain what I was experiencing was ‘derealisation’. Having discussed everything that had led me to her, she also thought I was likely to be suffering from PTSD, along with health anxiety, stress, depression and dealing with grief.  I really had hit the psychological jackpot. Lucky me.

The Doctor explained that ‘Depersonalisation Derealisation Disorders’, known by the initialism ‘DPDR’ is a mental health condition and ‘functional neurological disorder’. I didn’t really have any understanding what any of these terms meant, other than ‘mental health’ but I’m a quick learner, even with a lagging brain. They also explained that a huge percentage of people experience disassociation at some point in life, but it usually fades quite rapidly. Although I understand that a period of intense stress and trauma likely caused the derealisation to be triggered in me, the fact it has never gone away to me feels like there’s some kind of disorder with the way my neurology is functioning. So ‘functional neurological disorder’ feels pretty on the money. Basically the signals to my brain or the interface between my brain and consciousness aren’t quite firing in the way they used to or should do. 

As much as I felt reassured to have some kind of diagnosis and a better understanding of what I was going through, I didn’t quite understand how I could have PTSD. I’d not been to a warzone, I hadn’t suffered long term abuse, I hadn’t been in any recent horrendous car accidents.

That was the limit of my knowledge of PTSD. I wasn’t aware I’d experienced any trauma or issues in childhood that could have predisposed me to DPDR, but maybe my medical trauma and recent health anxiety were enough to tip me over the edge?

I soon discovered that there’s a number of things that can lead to some people developing DPDR – drug use, giving birth, trauma in childhood or adulthood, abuse, depression and anxiety, traumatic medical events, prolonged stress. I can certainly tick a few off the list thanks to my recent tribulations.

Even anxiety was something new to me. I’d felt anxious at times and maybe there’d been times when something played on my mind for a few days or a week, but I’d not had prolonged anxiety. I never thought I was an ‘anxious person’. Or at least I wasn’t until all my health problems kicked off. 

When it comes to experiencing anxiety, If anything I’d say it wasn’t something I was particularly acquainted with through life. No more so than the average person, if there is such a thing. If anything, I was quite a risk taker, throwing myself off jumps on a snowboard, scuba diving in the middle of the ocean or taking myself away on all kinds of adventures.

I used to do drama and performance on stage as a kid, into my teens and never experienced stage fright or any real anxiety before performances, even in front of hundreds of people. I guess it changed a little bit as I got in my teens as most teenagers do. You become more self-aware, sometimes more awkward and self-conscious, but anxiety wasn’t really something I was familiar with. 

I think at times I used to worry when I was a kid, but I would worry about slightly more unfathomable things like was the world going be ended by nuclear war or was I adopted, all of which I knew was unlikely or untrue, but I had quite a fantastical imagination. I’ve also always tended to overthink or consider all possible eventualities and outcomes. To me, that was planning ahead and calculating risks, but to psychologists, that’s ‘worry’, which is also known as your friend and mine - ‘anxiety’.

The diagnosis was important. I was able to start to piece together parts of the puzzle that potentially led me to where I was. From putting various clues together I thought DPDR sounded likely but it wasn’t until I was diagnosed that I actually started to understand it. I eventually accepted that it didn’t mean there was a cure or a quick fix, but I understood I wasn’t going insane and I wasn’t living in the matrix or about to be disconnected from it. Although that could have been fun. I have always wanted to learn kung fu.

I hate having DPDR and wish I could go back to how I used to be, but I can’t help admire the evolutionary genius of the condition. To have an inbuilt neurological system which essentially puts up a protective barrier and inadvertently and unwittingly disconnected me from the stress and trauma of the real world, to allow me to get on with life, is bloody clever. Albeit incredibly frustrating, annoying, depressing, isolating, maddening and any other suitable adjective that fits the bill.

I’ve learnt that many people experience dissociative symptoms at some point in their life, potentially about 75% of us, but normally they’re short lived. For some reason with me and the other approximately 1% of the population who experience it persistently, our brains get caught in some kind of loop and we’re unable to switch it off.