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. 

Catch of the Day

Likely to be a regular feature while I’m in acute mental health services.

Today it went something like this.

Back in the day, when I first developed my spinal problems, I was prescribed large numbers of prescription strength co-codamol. They were handed out in boxes of 100, on repeat prescription, for years, as I detailed in this earlier blog .

Given that the much weaker over-the-counter version of th drug carries a warning that more than three days use may cause addiction, unsurprisingly I became addicted.

Since then I have tried to keep off the strong stuff but still take the over the counter strength daily for the pain.

Because of a history of overdosing, for a long time my GP would only prescribe weekly, so I wouldn’t have a dangerous amount of medication sitting around. It was a hassle but I could see their logic, even thought the combined strength of the seven medications I was on would probably have killed me, even with a week’s supply.

I take eight co-codamol per day, which, maths fans, adds up to 56 tablets.

Eventually my mental health was stable enough that I was returned to monthly scripts, and I received four weeks of everything. Except my co-codamol, which was still given as a box of 56. When I queried this with the GP she said that due to my history they would not prescribe more than one week’s worth for the entire month. I asked for post dated prescriptions and this was refused. This meant that despite paying for my medication on a pre-payment certificate, I had to go to a pharmacy every three days to buy more co-codamol over the counter (and hear the pharmacists warning that ‘more than three days use causes addiction’. You don’t say).

Now I’m in the crisis house, and they will only administer medication that has been prescribed (you’re not allowed to hold your own. In fact I had to smuggle some multivits inside my vagina but that’s another story).

So the GP will not prescribe the correct amount (the fact that I need this drug to treat chronic pain is not in dispute) and the crisis house will not administer over-the-counter co-codamol ‘for more than three days as it says on the packet that they cause addiction’.

So far I have explained this situation to:

The manager who assessed me for the crisis house

The pharmacist at the crisis house who reviewed my medication

The worker who admitted me to the crisis house

and finally, this morning, the member of staff at the crisis house who, when I asked her for my lunchtime meds, disbelieved my concise summary of the situation.

No punchline today. In fact I’m going to go and grovel for one of my Valium and see what difficulties that throws up.

What’s the difference between Ant McPartlin and a civilian? Rehab is not an option for most of us

pills

 

I was sorry to read today that TV presenter Ant MacPartlin was “going into rehab” after admitting a struggle with depression, alcohol misuse and addiction to prescription drugs. 

Although McPartlin is in no way my cup of TV tea, I understand that it must have been incredibly hard to have stayed at the top of his game for so many years in a business that delights binning those who have outlived their light entertainment shelf life. I’ve known enough people in the entertainment industry to know how hard they have to work to keep their heads above water.

I understand that McPartlin’s problems have partly arisen as a result of being left in chronic pain following knee surgery, and as a fellow pain sufferer I can see only too easily how this came about.

Dan Baldwin: Fragile - Private View

I suffered a herniated disc back in 2012, as a result of going running to try and control my bipolar disorder. The running was incredibly effective, but my spine was not in agreement andI ended up having to have surgery for a slipped disc. During this time I was placed on high-strength opiate painkillers, on top of my ordinary psychiatric medication, with the advice to “take them, whether you feel the need to or not” (this advice is based upon the reasonable assumption that if you wait until you are in pain, the muscles around the area will be in spasm and the pain will be worse, whereas if you take the painkillers regularly you are less likely to restrict your movement and cause further problems).

Great, I thought. No problem, I thought. 60mg of codeine per dose was easily enough to convince me of the doctor’s wisdom. After the first dose, in fact, I believed I’d never have any problems again. It wasn’t enough to completely kill my agonising pain, but it was certainly enough to help me not care that I was now bedridden.

I had my op. Post-operatively I was prescribed Tramadol on top of the co-codamol and three other painkillers I was taking. I used one of those old lady pill organisers to ensure I was taking my medication correctly and found I couldn’t shut the lid, so great was the number of tablets inside. I didn’t care. I found I didn’t care about much, until I realised it was a year later, I was two stone heavier and I hadn’t left the house for eighteen months.

By this point, I was a long, long way away from being able to enjoy any of the therapeutic effects of exercise on my mental health. I was terribly depressed. The codeine no longer had the same joyous effect, and so I’d drink to try and replicate the blissful state of blotto. When that didn’t work, I’d take extra co-codamol. I remember phoning NHS Direct (now 111) because I couldn’t breathe, and them advising me to sleep propped up on pillows. They didn’t ask the right questions to discover what I know now, which is that my breathing was suppressed as a result of overdosing on co-codamol and alcohol.

This unhappy state of affairs culminated with me being awoken from a drugged sleep one night by the police banging down the door. I’d told my friend online that I’d taken (as had become my custom every evening) about 20 co-codamol, as well as alcohol. Oh and I’d sliced up my arms for good measure.

I don’t know what Ant’s rock bottom was, but I’d hit mine.

But if there are parallels between our stories up to now, this is where they diverge.

Because the thing is, there is no “rehab” for those of us reliant upon the NHS. I spent a few days on a general NHS ward whilst the drip treated my damaged liver. I went on to spend the next six months being buffeted between home (where I could not cope), psychiatric hospital, where they kept on trying to discharge me because, although i was actively suicidal, I wasn’t mentally ill enough, and various short stay ‘crisis’ houses, which had very strict time limits of a week or so. There was no rehabilitation facility for someone who had become addicted to prescription drugs because they were prescribed those drugs by their GP. It was a matter of going home and sitting it out; or more realistically, going home and taking regular overdoses and being buffeted in and out of crisis care, which amounts to one visit every couple of days to check that the knives are hidden. Not “rehab” by a long chalk.

The Telegraph reported McPartlin to have said about his difficulties:

“I’ve spoken out because I think it’s important that people ask for help if they’re going through a rough time and get the proper treatment to help their recovery.”

I’m really pleased McPartlin has spoken out, but let’s be realistic about what this “proper treatment” amounts to for those of us not wealthy enough to afford The Priory. The NHS does not have these mythical rehab facilities. If we feel sorry for McPartlin, we should extend this pity to the average service user who is struggling through these problems alone.