A Chink of Light

Andy and Rita

My dear old mum (RIP) used to have a rule: if I phoned her in a crisis, I had to also remember to let her know once the crisis had passed. It’s a good rule and I’ve tried to bear it in mind ever since.

After a good few months of the worst mental and physical health I’ve ever experienced, I’m feeling a little better. This week I’ve managed to leave the house twice, admittedly once was for medical appointments, but today I actually managed to go out for a purely fun and social event! Stone the crows! I was whacked and in a lot of pain by the time I got home, but it was wonderful to be outside, to see the trees in their end-of-autumn colours, and just to breathe some lovely London pollution. Just to feel normal for a while.

I know there’s no one-size fits all with mental illness, but a few things have really helped me and I may as well share them with you.

Firstly, being able to afford the input of a private psychiatrist really helped me. Although I can’t afford to be treated by him in the long term, just a few sessions really helped me (the beneficial effect no doubt being increased by the frighteningly large sums of money dispensed) because he gave credence to my experience in a way that my NHS practitioner seem to have given up on. He confirmed I was experiencing a bipolar mixed episode and said that I must be facing unimaginable torment. Although his words didn’t take any of it away, it was such a relief to put a name to the beast and feel validated.

The downside was that the only medications available to me were antipsychotics, which have a pretty horrendous side effect profile, or repetitive Transcranial Magnetic Stimulation (rTMS) which costs £12,000 and is unlikely to be effective in the long term. But before we came to medication, the doctor thoroughly audited my life, and recommended this book which is one of the few I’ve come across to deal directly with mixed episodes.

Although the advice the doctor gave me was fairly basic stuff, especially to anyone who’s had years of therapy, it served to motivate me to kick my arse back into gear. Here’s the bottom line of the doc’s advice.

  • Stop drinking. I’ll admit this came as a body blow to someone who is a self-confessed seasoned drinker. I knew that I used alcohol problematically to deal with the crazy way I was feeling, and I was prepared to wave goodbye to that, but I also knew that there were times that I loved drinking and would really miss it. Some people can manage moderate drinking, but being a very all-or-nothing person, I know the best thing for me is to be completely abstinent. I stopped that day and haven’t drunk since, although I will never rule it out. I am resigned to the fact that alcohol will probably be a permanent struggle for me.
  • Give up caffeine. Whaaaaaaaat? Dear sweet lord, is nothing sacred? Apparently not. I quit coffee and my beloved Coke Zero and I can safely say it’s harder to give up than alcohol. Pass the decaf chai latte.
  • Practice sleep hygiene. I’m normally pretty good with this, but in my manic state was waking through the night or very early in the morning. At first I was so overstimulated I had to step away from tech from around 7pm.

With the help of the above – plus a two-week script for Xanax – I managed to bring down my mania within a couple of weeks. However, I was still left with the sticky anxiety and depression that dogs my footsteps.

In desperation, I tried CBD oil. A couple of people had recommended it to me, but I had dismissed it because I was already on so much medication I didn’t want to add anything else into the mix. However, my Xanax was running out and I wanted to come off benzodiazepines, so I got hold of a bottle from Holland and Barrett.  I am a super sceptical person, especially when it comes to unevidenced alternative remedies, but I can only describe the effect as incredible. After about three days, I started to feel far less anxious and actually something resembling ‘normal’. I was able to stop Xanax with no problems. I’d say the CBD oil helped bring my anxiety down from a seven or eight to a two or three. I’ve taken it every day since.

The other thing that has helped me no end is the selfless support and care of my best mate, who moved in a couple of months ago. He’s unfailingly caring and generous with his time and willingness to listen to my daily trials, to take me to my many medical appointments and to motivate me to go out. Not only that, he literally provides me with something to lean on. My back has been particularly bad lately and I’ve had to invest in some crutches, but thankfully I’ve not had to use them yet as I’ve had my friend’s arm to grasp. Having battled with this alone for years, his support means the world to me.

With the help of my excellent MP, I’ve managed to finally get referred away from the personality disorder service to the mood disorders team. My diagnosis remains contested, with yet another psychiatrist disputing the BPD diagnosis last week.

I also managed to get referred to a psychiatrist endocrinologist, who has recommended a trial of hormone therapy. Every doctor I’ve spoken to recently (and there have been MANY) have spoken about how the role of hormones in affective disorders is massively under-researched, and when you consider the role of hormones in PMS it makes sense that an imbalance would cause mood disruption. I strongly suspect this won’t be cracked in my lifetime, but I’m pleased to be giving it a go.

On the physical side, I’ve involved my long suffering and hardworking MP here too. He’s intervened to challenge my neurologist who refused to give me pain-relieving injections in my spine because I’d self-harmed. Still waiting for an update on this (hey, they’ve only had my complaint since June, why rush); it seems likely I’ll get some help eventually, be it the injections or an operation. I suspect it may be some months though. In the meantime, I’m limping around and relying on my wonderful housemate to dress me.

So that’s about it as far as current health developments go…I’m by no means out of the woods yet, but things are a hell of a lot better than they were.

Did I do OK mum?

 

 

My Pregabalin Hell

It was recently ruled that the drug Pregabalin, used for anxiety and pain relief, is to be reclassified a Class C controlled substance. Here is my account of nine years addicted to the prescription drug.

 

This week the Guardian reported that the anxiety drug pregabalin is to be reclassified as a Class C drug. This means it will be considered a controlled substance and no longer available on repeat prescription.

This comes as no surprise to a state-sponsored pregabalin addict like myself.

I have been prescribed pregabalin continuously for over nine years, since the drug was relatively new, and I know the damage it can cause. 

I was originally prescribed the drug for anxiety and found it to be as effective as Valium, but my tolerance to the drug increased and after a slipped disc left me with nerve pain I was placed on the maximum daily dose. After that I found it impossible to quit.

It took me some time to realise that, rather than helping, pregabalin was becoming part of the problem. I realised how heavily addicted I was to the drug when I realised that my anxiety symptoms were not anxiety at all, but in fact withdrawals because I was due my next dose. On the rare occasions I found myself without the drug I experienced withdrawal symptoms many times more horrific than withdrawal from benzodiazapines and opiates – I can only describe the level of terror like being buried alive. I have broken down in my pharmacy screaming because the GP had made an error and left me without the drug. The humiliation of clinging to the pharmacy counter in tears, explaining that you can’t ‘call back later in the day after work’ because you can’t go to work, because you cannot function without the drug. 

pregabalin lyrica withdrawal

I have spoken to my psychiatrists many times to request help with withdrawing from pregabalin but in the early years they were unwilling to accept that it was as addictive as I told them. I found myself researching ‘pregabalin addiction’ and finding little in the way of research papers, but reams of anecdotal evidence. Yet again, it seems, a licence was granted for a drug without studies as to the long-term effects.

My struggle continued, and the NHS started to doubt me less when I explained my addiction. Recently, a nurse who works in substance misuse told me pregabalin addiction is now recognised as a problem, not just as a prescribed substance but recreationally. Pregabalin has become a currency in prisons and was last year linked to 111 deaths.

I needed it, yet hated the hold it had over me. When I spoke to my doctors about reduction there was the ever-present argument not to change my drugs and risk upsetting my mental state. Furthermore, the NICE guidelines for quitting the drug suggested it should be tapered over a week, when I knew such a rapid reduction would be impossible unless they locked me up as an inpatient – which I even put forward as an option. 

I eventually managed, with the help of a supportive psychiatric team, to reduce my dose over the course of six months, but even by doing this in small increments I suffered suicidal impulses – and actually tried to commit suicide one one occasion. In the end my psychiatric nurse told me to stop trying it as it was causing too much risk. 

I’ve also taken massive overdoses of pregabalin mixed with my many other medications to attempt suicide. On being admitted to hospital, the psychiatrist asked how I was feeling. I replied “I feel fine – I’ve just taken a fuckton of drugs”. Sitting in a windowless room in A&E having tried to end my life I literally felt like I was floating on a lovely cloud. I can understand why pregabalin is used recreationally. 

Although I know this new classification will make my life hell obtaining my regular prescriptions, having seen the damage it can do I’m in favour of greater regulation. The question I would really like answered, is how the hell do drugs like this get licensed in the first place without long term trials.

Effectively, I have been an unpaid guinea pig for the manufacturer Pfizer so they can line their pockets. The drugs industry has profited from my pain – and it’s about time they were made accountable.