On bipolar and Asperger syndrome, part 2

On Monday after a poorly-written first draft (which made it sound like I really wanted to tell my life story), I quickly threw together a piece for Creative Bloq, talking about mental health and my experience of living with bipolar disorder and Asperger syndrome.

I feel like I've come to the party late with my diagnosis, because I now sometimes sit a lot and go "oh! THAT's why that happened" when thinking about my past experiences.

However, 1100 words is not much to really describe the rollercoaster of experiences living with a mental health diagnosis gives you, and I promised people on Twitter I would follow up with more information on support and information.

After my initial diagnosis of bipolar, I was referred to a psychiatrist at the local mental health outpatients unit.

Structure and form

For my non-UK readers, in the UK, every area is covered by a primary care trust (PCT), or now clinical commissioning group (CCG) since the Conservative-led "restructuring" (I'll post more thoughts on this another time!). "Primary care" is used to refer to physical ailments - where you need surgery, a limb placed in plaster, or some prescription medicine to cure an illness. "Secondary care" is used to refer to the invisible ailments of the mind.

The CCG's job is to receive money direct from the Department of Health (DoH) and spend it on treating the patients across the areas it covers. This will include front-line care (A&E, critical illness, out-of-hours GPs), hospital treatments and surgery, social care, your GP, and mental health.

PCTs (now CCGs) would originally purchase "secondary care" services from outside providers, most of whom used to be NHS trusts in themselves, but now this has been opened up to be "any willing provider" (read: for-profit businesses).

Thankfully since the "restructuring" unde the Health and Social Care Act 2013, most secondary care providers have retained their form and structure and are still operating, although against tougher competition (which isn't necessarily a good thing).

So, back to care. My CCG purchases mental health services from West London Mental Health Trust (WLMHT). I go and have outpatients appointments every so often (sometimes I walk in if I'm feeling particularly low, which I did a few weeks ago), they prescribe me drugs to "experiment" which one/s are right for me (I'll move onto medication in a moment). In the meantime, I was waiting about 4 months for the referral, so I self-referred to the local CCG's "Back On Track" service, which is "mental health Lite" - it offers counselling, group therapies and cognitive behavourial therapy (CBT), which I explicitly requested. I went through a very instructive course of five to six rounds of therapy, before being told that since WLMHT were assigning me a psychiatrist, they were taking charge of my care, and therefore my CBT would come to an end unless my psychiatrist thought it would be in my best interests to commence it again.

What now? Medication

When I started with my psychiatrist and he diagnosed bipolar, I went away and read about the condition in more detail. This was probably the scariest part - facing "the demon". Standard treatment for people with bipolar is lithium.

For those of you who failed chemistry in school, this is lithium reacting with water.

Your body is 92% water. Take a guess at what this does to your body. Now take a guess at what this does to your mind.

However, since it's been prescribed since the 1950s (because scientists discovered it, by pure luck, happens to stabilise people with bipolar), and double-blind trials have proved its' efficacy, it's still prescribed today, with strict oversight and monitoring (regular blood tests are required to ensure you don't reach this magic number - at 1.5mEq/l, or 10.5mg per litre of blood, it gets toxic and you might die).

I expressed my reservations at being prescribed lithium, which my psychiatrist agreed with, but I did want to try some medication to see if that would change things. I was offered two drugs - sodium valproate, which also requires monitoring, and is an anti-convulsant normally prescribed to people with epilepsy to prevent seizures, but also helps stabilise bipolar, and quetiapine, an anti-psychotic and anti-depressant. I chose quetiapine at the time, whilst working in another city which involved 3-hour commute times (I would head up on a Monday and return on a Friday).

I disliked quetiapine from the start. It made me horrendously drowsy. I was scheduled to take two doses, one morning, one evening, and after a friend witnessed my morning dose, 30 minutes later and two espressos, she described me as looking "drunk". This was not good.

Some adjustment to dosage (I switched to a single dose, taken nightly), and I started sleeping for 8-10 hours a night, and still waking up fatigued and struggling. This drug was making me drowsy, plain and simple, and it was killing my ability to think when I needed it the most.

At the end of July I simply stopped taking the quetiapine. (Don't try that at home, kids.) I entered a period of relative stability, then a depressive phase hit in early to mid September. Recent personal events have also compounded the depression quite a lot.

After struggling to ask the mental health trust "nicely" for an appointment (phoning them twice, staying on hold, getting a callback from your psychiatrist assuring you they will try and fit you in ASAP), I walked into my GP and asked for Prozac just because I felt like jumping in front of a bus, and I knew Prozac would get me "out of a hole", so to speak. The next day I walked into the mental health outpatients' centre and handed over a note, which explained why I needed to see a psychiatrist THAT DAY. I was seen at 11.30am the next morning. Finally!

After discussing options for medication, and the fact that I'd stopped taking quetiapine, I was given olanzapine, which is from the same drug "family" as quetiapine. So far, I'm liking it (I'm on week 3). I'm not exhausted every day, which is nice. I'm still taking Prozac to lift me out of my "low" but that's helping too. Things aren't great, but they're stable.

Further support

I'm seeking out support groups in London on Meetup.com. As a fervent supporter and fundraiser for the National Autistic Society, I'm seeing if they have any local support groups I can check out.

Otherwise, if you're in London and fancy a beer and a bitch about your meds, your treatment or anything else, please leave me a comment. I'll bring the straitjackets.

C'mon, it's Halloween... after all, I believe what doesn't kill you, simply makes you... stranger.

Me as the Joker on Halloween 2014