Akathisia

Letter published in 'Perceptions' magazine describing Akathisia

Letter published in 'Perceptions' magazine 2008 describing Akathisia Hell

Akathisia - what is this? Akathisia is a side effect (what an innocuous term) of psychiatric medication. For me, this ocurred when medication was administered by injection. Akathisia is from the Greek for 'not to sit' or 'without sitting' and it means just that. It refers to constant restlessness and an inability to get comfortable. Sounds peculiar, but it is indeed absolute hell. This was how my now-deceased friend Ivan described akathisia. My friend Sue also pointed out that akathisia means more than just physical inability to stay still, it means intellectual restlessness and inner discomfort. This means you cannot stay still and concentrate to read, listen to the radio, enjoy music or watch TV. During one of my first asylum stays there was a young woman from Tunbridge Wells who had been put on Depixol injections, and I remember her saying she had just run from Hellingly into Hailsham and back, and could not stop moving. For me, this inner restlessness that compelled movement was doubly awful as I have an artificial leg. That can be uncomfortable at the best of times, and to need to even get up and down all the time was a trial and painful. The option of running into Hailsham was not open to me because of my artificial leg, but I could understand that young woman's traumatic plight. There was a letter from Sean in the Spring 2008 edition of Perceptions magazine, and Sean lays this down about akathisia too. He describes its hell.

 

Still from GetWellSoon2(Aka) 1

Still from my powerpoint presentation 'GetWellSoon2(Aka)' Speech bubble reads "I can't stay still". You were sedated as well as driven by restlessness, and there was no respite. You could not get comfort or rest, as much as you might try.

Just to say, these were not injections like with heroin or cocaine. They were not intravenous administration of narcotics. They did not make you high or stoned, and they are not addictive. Exhortations to people on psychiatric injections not to stop them, assume that this will result in a psychotic episode. This in turn assumes that a psychotic episode will be worse than the side effects of the injections, which for me was plainly never the case. 

Still from GetWellSoon2(Aka) 2

Still from 'GetWellSoon2(Aka)' speech bubble reads "I need to sleep but I feel so restless at the same time". What an innocuous term, side effect, and what hell is the side effect akathisia.

The side effects of injections were worse than psychosis, unpleasant as that too was for me at times. For some people, there is evidenced fear of needles and injections, and that is another factor that makes administration potentially worse than bringing on a psychotic episode. It is a disincentive to comply with treatment. All of these psychiatric potions are available also in tablet or liquid form. For me, therapeutic intervention using pills has proven to be effective and to help me avoid psychotic episodes over long periods of time, that is over many years. The pills do not make me stoned, they are therapy to enable me to avoid delusions and paranoia. Side effects with tablets are, for me, acceptable.

Still from GetWellSoon2(Aka) 3

Still from 'GetWellSoon2(Aka)'.  Speech bubble reads "I just want this to end". But it wouldn't end, for seven days and seven nights after an injection. Then seven days of normailty, free from akathisia. Then the chart in the nurses room would say 2/52, two weeks from fifty-two, your fortnightly injection is due again.

In recent years the drug sub-culture has embraced all sorts of narcotics, and drug takers engage in the full spectrum of hard and soft drugs. I have to say that in the 21st century, with our intractible problems of worklessness and social exclusion, I cannot blame people for not seeing a way out. And if you are on Depixol or Modecate and are supervised to comply with that, I don't blame people for taking Class A narcotics. I imagine those substances are guaranteed to take away the side effects. By the same token, I do not criticise those service users who like to have injections still. I can think of three gentlemen. One lives far away in the Welsh countryside and welcomes the contact with his CPN who comes to inject him once a fortnight. CPN's are community psychiatric nurses and their job is to go out and give injections to outpatients, sometimes at clinics or at day centres. The equipment is usually carried in a black briefcase. Most people on injections are expected to have them indefinitely. Also I know of two people who have tried new atypical medication by tablet and have found their psychiatric symptoms returning, so they chose to go back onto injections. Power to them, I say, but that's not for me.

 

Still from GetWellSoon2(Aka) 4

Still from my powerpoint presentation 'GetWellSoon2(Aka)'. Every two weeks you would go behind the 'privacy' of the curtain round your dormitory bed and someone would inject you, always in the backside.

My number one complaint with the NHS asylum system was the injections. That was what drove me to multiple admissions and discharges, to vagrancy, and was an absolute hell. I never refused to take medication by tablet, and was put on injections for disciplinary reasons. During my many admissions between 1974 and 1991, they would say that as I had not had any medication they would put me on injections to make sure. The very reason I had not had medication was because it was delivered by injection, always humiliatingly in the backside with my trousers dropped. (There was one exception to that. At one time I drove from Hever, where I lived in a B&B in the middle of a field with no heating, to Crowborough for injections at the surgery of GP, Dr P C Cobb. Dr Cobb gave me injections in the arm. The side effects were just the same as in hospital - akathisia 24/7 for a week. But at least the procedure was not humiliating.)

Still from GetWellSoon2(Aka) 5

Still from 'GetWellSoon2(Aka)'. This is what a 'depot injection' is, it's what it looks like. It's not just a one-off, it is designed to be administered without fail every two weeks. This process is enabled by the NHS reminder system.

To explain, medication by injection is called a depot. It was designed to be long lasting. So they gave you antipsychotic medication mixed up with various other substances and it was all included in some kind of oil base. This oil base meant that the ingredients would be released from your backside over a period, for me seven days and seven nights. The effect of the injection would be with you all the time, day after day after day. With tablets, the effect is short-lasting and daily, and there is a peak of the effect, which for me is usually sedative, and then a run down. That is acceptable for me and for over 10 years I have had medication by atypical tablet, which is less sedative than the old style of tablets called typicals, which I took for the previous ten years on discharge for the last time. So now each day is the same and acceptable. With injections there would be the sledge hammer of the effect for seven days and nights, and then a week of feeling normal once the oil base had worn off, and then it would all start over again with another jab in the bum.

 

Still from GetWellSoon2(Aka) 6

Still from 'GetWellSoon2(Aka)'.  Speech bubble reads "Right! That's you done. You'll have your next injection in a fortnight, as usual". Just part of the job.

The injections I had were called Depixol and Modecate. In the first asylum I was in, at Hellingly in East Sussex, they gave me injections of Depixol. This is manufactured in Denmark by a company called Lundbeck. This is not named for the Scandinavian university of a similar name, it is named after a founder director who may still have family members on the board. During my repeated admissions from 1974 to about 1980, I was given Lundbeck's Depixol by the NHS. This was extremely bad for akathisia. There is a definition of akathisia on Wikipedia, with reference to the Barnes akathisia scale. This includes five levels of discomfort. Level 4 is where the patient can sit for more than five minutes. Imagine that - a relative success and not in the worst category, when you can sit for five minutes! This is the hell of Depixol and akathisia. When I complained, they would often increase the dose. This was prescribed by the ward consultant J A Stewart on a ward run by a Broadmoor-trained teddy boy called Mister Burke (not quite his correct surname). I was reported to Dr Stewart by a Mauritian nurse called Mohammed for not taking my tablets dispensed after meals. In fact I did not take tablets with water as I did not wish to drink water after a meal. I swallowed the tablets with saliva. So Dr Stewart called me in and said there was 'some doubt' about me taking the medication, which by that time was the condition of a probation order, as I had by then got a criminal record following time at Hellingly. I would have medication from then on by injection. I was cool with that, as I had been used to injections from my time in Orpington Hospital when I had lost my leg at age 17. So Mister Burke, in his official uniform he always wore, of white coat with green epaulettes, brought the hypodermic to my bed in the 10-person dormitory. He pulled the curtains round. I rolled up my left sleeve as I am right handed. I did not realise what all this was about. I was about to find out. Dave, the teddy boy who had been trained at Broadmoor, said I had to drop my trousers and have the injection in my backside. I had a choice - I could have it lying on the bed, which Burke prefered, or I could have it standing up. I said: No it's all right, I'm used to injections from my time in Orpington, I can have it in the arm.' Mister Burke then explained that if there was any funny business he would be happy to go to the ward phone to call 333 and get the crash team out to restrain me. He'd be delighted to do that. So I dropped my trousers at that threat. I knew Mister Burke had been trained at Broadmoor and insisted on being called 'Mister Burke' in his white coat with the green epaulettes. He called the patients what he liked. At Broadmoor patients sometimes die from being restrained. I had long hair and aspired to peace and love and could not believe that the NHS could do anything but good. I was surprised by this turn of events, I did not expect it, but that was how things were to go on for five or six years. And it was all free at the point of delivery.

GetWellSoon2(Aka)AP.pps

To download the full version of my powerpoint 'GetWellSoon2(Aka)', click and follow the link on the left.

 When I was sectioned for the first time, that was in about 1980 or 1981, and I was taken to Oakwood asylum as my last address was at that time in Sevenoaks, in the Maidstone catchment area.(Oakwood was near Maistone). I was committed for a year under the 1959 Mental Health Act. I appealed against the section, I think it was Section 26, and its treatment order, but was unsuccessful. So as at Hellingly, the Oakwood doctor, Dr Symonds, said I would be put back on injections and would not listen to my objections and the certainty of non-compliance in due course. We had a conversation: (me) Why Depixol and not Modecate? - (him) OK I'll put you on Modecate. End of. Yes, that was it. I had heard of Modecate as other patients had that injection at Hellingly. It sounded a bit less severe than Depixol, and that was all I knew about it. With Modecate I still went through a fortnightly cycle of hell, but it was not so severe as Depixol. I would be knocked out by about seven or eight in the evening for a week. With Depixol, as soon as the last hospital meal of the day was over at 4.00pm, I went to my bed and fought the symptoms, and tried to close my eyes for sleep until called an hour before breakfast at 7.00 am the next morning. Absolute hell. With Modecate it was not so severe and I could last awake until mid evening. I was discharged to a Richmond Fellowship hostel in Lytton Grove in Putney after many months at Oakwood. I had been given the task of commencing an Open University degree by the appeals managers at Oakwood. Then I got a job as a clerk in the City of London. So each day I got the Tube from East Putney to Monument and in the evening I spent as much time as I could at study for the OU. The warden said to me that he didn't want me to shut myself away in my room. But, man, I'm doing a full time job, I get these Modecate injections for which I have to go to Queen Mary's Roehampton in my spare time, I am doing a university degree man, and you say spend more time socialising with the other residents! At Lytton Grove I self-medicated for the only time. I remained under supervision from the Richmond Fellowship to have Modecate injections, and I got pally with another resident who was a local of South-West London. He introduced me a to a family woman in Hammersmith who was a drug dealer and I began to buy cannabis from her. I hadn't smoked dope since 1972 in Reading, but wanted something to compensate for the Modecate sedation. The dope didn't do an awful lot, but I kept it up for the two or three years I was at Lytton Grove, I could afford the dope with my City pay.

My time in Putney was to come to an end, as had all other episodes in my revolving door time, with vagrancy and psychosis. My City pay eventually enabled me to afford a 100% mortage on a terrace house in a poor part of South-East London, Plumstead. What that home ownership at 6 Orissa Road meant was only one thing: no more injections...for the umpteenth time. So I got psychotic, behaved badly at work and was got rid of at a takeover, then the house got repossessed and there then followed five whole years of vagrancy and homelessness. House, job, future, just goodbye. All due to the failures of the NHS during the revolving door, ably assisted by Depixol and Modecate injections. Every time I had an outpatient appointment with the NHS psychiatrist, I would virtually plead with them to take me off injections and put me on tablets. Every time they refused, Hellingly, Oakwood, Queen Mary's Roehampton.

They did try to give me drugs for side effects once, at Hellingly. That is a bizarre incident in itself. They prescribed me a Valium injection with the usual Depixol. There were two nurses. I had been softened up by 'Mister' Burke, the Broadmoor-trained teddy boy who liked to call out the crash team, and was passed over to a mature female nurse and a 17 year old girl trainee. The girl could not stop giggling when I dropped my trousers. The older one gave me an injection of Depixol in the backside and then removed the syringe so the needle was still in my rear. She got the giggling girl to get a phyll of Valium and when the giggling girl could not do it, the older nurse attached the Valium to the needle remaining in my bottom, and gave me a second dose of drugs through the same hypodermic. I found that the Valium made me stoned like cannabis and told the staff. The Valium lasted one day. Then there followed the rest of the week with akathisia. That was the only time they tried anything to counter akathisia, (which I think is an impossible task except by using Class A drugs). This process had started all that time ago with nurse Mohammed going to Dr Stewart, with 'Mister' Burke and his cohort brutally carrying on the deeds.