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Neuroleptics Ahhh!

Posted by ed_uk on November 2, 2004, at 8:50:56

Hello........
I know this is a long post but it's easy reading so don't run away!

I wanted to post my experience with chlorpromazine (Thorazine/Largactil) just to see whether anyone else on babble had had similar experiences. I'm also interested in experiences with other typical antipsychotics such as haloperidol (Haldol/Serenace), trifluoperazine (Stelazine), perphenazine (Fentazin), fluphenazine etc.

I was prescribed chlorpromazine to see if it would reduce my anxiety and obsessive thoughts. I was already on citalopram and was needing the occasional Valium to calm me down.
I was initially prescribed 25mg chlorpromazine three times a day. After taking it for two days I was no better, my OCD was out of control so I took 150mg chlorpromazine to see what it would do. (maximum daily dose is 1000mg). Well that was the biggest mistake of my life, now I think I know what it truly feels like to be in hell.
About an hour after taking the dose I began to feel very restless and uncomfortable (akathisia). My mind was foggy and I couldn't think. I felt confused, I couldn't concentrate on anything for even a second- my brain just wasn't working.
Soon I was much more agitated, I couldn't stay still for even a second. My body couldn't rest. I had to keep moving but it gave me no relief. In the end I would just lie on the floor because I was so tired, I felt like I had to move but felt no better even if I did.
I felt so helpless and terrified, I thought I would never feel normal again. There was no pleasure in anything now, the world seemed grey and cruel. I wanted to die to end the pain. My body was writhing and I couldn't stop it. The spasm(dystonia) in my tongue meant i could barely speak.
In the end I knew I had to go to the emergency department, my mother quickly drove me. My experience of the ER has always been dreadful, the staff had no understanding of mental health and no sympathy.
Soon I got to see the triage nurse. She didn't understand me when i said i had AP-induced akathisia- she didn't know what it was. I said I needed to see a doctor fast but she didn't believe me, i think she thought i was wasting her time.
I couldn't stay still in the ER. Felt like i was being tortured. All the pleasure had been sucked out of my body, everything felt awful from head to toe. I cannot put into words what it felt like, was like my muscles were going to explode.
I'd been waiting for two hours. No one took any notice of me, no one came to treat me. All the patients looked so well, lots of nosebleeds and cut fingers, they were all being treated. I was non-serious. I think unless you're having a heart attack or major head trauma they just don't have time for you. The staff were cold and unhelpful. I couldn't take it any more, I screamed unless you treat me i'll kill myself here and now, i'll throw myself out of the window. Eventually they gave me 10mg valium, it was so inadequate- was supposed to last me all night until i could go to the pharmacy the next day. They wouldn't give me anymore, despite the fact it clearly wasn't enough. I told them i always need at least 15mg doses for anxiety but they treated me like a drug addict just for asking. The next day i went to the pharmacy, there'd been many long sleepless hours before it opened at 9.00. I got ten 5mg tablets of valium. Straight away i took three. It was better than nothing but not great. An hour later i took another two tabs, i felt better but it didn't last...... 12 hours later i'd taken all ten tablets. I wasn't sedated at all, still uncomfortable but now it was bearable. I'll never take chlorpromazine or any other neuroleptic again. I think now i know what it feels like to be in hell.

Tell me, what your experiences with neuroleptics. Have you ever been injected with one? eg. Haldol or droperidol. Please tell me. What did it feel like?

Now, a year later, I will never forget my experience with the neuroleptic.

Read this, i found it in the New Scientist.....

He found himself sobbing uncontrollably, unable to work a sandwich dispenser and consumed by guilt. Clinical psychologist Richard Bentall had taken a psychiatric drug as part of an experiment. Add in personal tragedy and a spell of depression, and he could never see mental illness the same way again.

Was some of that research a bit personal?


I was involved in an experiment by a colleague, David Healy, at the North Wales Hospital in Bangor. We took a very low dose, 5 milligrams, of droperidol, very similar to the widely used drug haloperidol. Parts of the study were never completed because nearly everybody had a terrible reaction to the drug. Mine was not the most extreme. There was a psychiatrist who became so deeply depressed that she was put under observation.


What happened to you?


I drank this stuff and I felt lethargic and sedated. I thought I had got away with it. Then a psychologist walked in and said: "Oh, this is embarrassing, Richard, but we'd like you to fill in this test." The embarrassing thing was I had designed the test myself 10 years earlier. I looked at it and I could as soon have climbed Mount Everest. I felt a sense of depression and hopelessness but also an inner sense of restlessness and agitation. It was a combined wanting to do something and not being able to. Then she said: "You don't look too well - would you like some lunch?" I interpreted that as an order - and I've read since that people on neuroleptic drugs take statements as orders. So I said yes. Then she said: "We've a sandwich machine - will that do?" And I said yes because it was all I was up to saying. But I couldn't get the energy to decide what money to use. I just grabbed a coin and it was enough to get a Mars bar, which I was too ill to eat.


Did the drug wear off?


I had to do these neuropsychological tests, and it was embarrassing, but I burst into tears halfway through. I started weeping uncontrollably, so much so that I was given an anticholinergic drug as an antidote and David took me out to get some fresh air. I suddenly felt I had to tell him about all the things I had ever felt guilty about. Then I went back and fell asleep for 3 hours. I woke up with a woozy hangover, like there was a glass wall between me and the world and that lasted for about a week after a single dose. The akathisia - the combined agitation and depression I felt - is experienced by 40 per cent of patients. It tends to go away after about a week, but imagine: you've had a crisis, you're admitted to hospital, you're hearing voices, then someone gives you a drug that makes you feel like that!


But they are designed for sick people...


About 40 per cent of patients have the same experience. That's the great unasked question of psychiatry: what was it like for you? Patients' experiences have been completely ignored.


So are the antipsychotics effective?


It's more complex. There's no doubt these drugs help some people by reducing the hallucinations and delusions. But there are really important caveats. First, something like 30 per cent of patients get benefits from the drugs - and we don't know which ones they will be. Secondly, these drugs have the most horrendous side effects. The old type of antipsychotic drugs produced what we call extrapyramidal effects, including Parkinsonian tremors, tardive dyskinesia (uncontrolled movements of the mouth and tongue) and akathisia.


But surely you just give low doses?


There is a scandal which I must get on my soapbox about - neuroleptic dosage. These drugs were discovered in the late 1940s and in wide use by the 1950s. Bizarrely, the first studies to look at the most appropriate dosage were not published until the 1990s. It turned out that low doses work at least as well as high doses. And for much of that period it wasn't uncommon to find patients on 80 to 90 milligrams of haloperidol. We now consider it irrational to give more than 10 milligrams and better to keep it at 5 milligrams a day, although you can still find patients on higher doses. We've got a massive amount of drug-induced illness - millions of people - and some of them have even been sent to early graves because of the increased risk from heart attacks and various blood disorders. All completely unnecessary.


What about the new antipsychotics?


It turned out the new drugs looked great compared to irrational doses of the old ones, but when compared to rational doses there was hardly any difference. The new drugs don't produce the old side effects, but there are a load of new ones: diabetes, sexual dysfunction, weight gain. I'm not saying drugs never work. If you talk to patients, some will tell you that drugs are a lifesaver and others that drugs have made their lives worse. Quite a few patients now on drugs would be better off without. Perhaps the best thing is to encourage patients to try them and let them decide.


How far can you take this? What about when people are forcibly admitted to hospital?


The first question is, do they need to be? In a lot of circumstances it can be avoided by engaging people in the right way. Why do patients get forcibly admitted? Because they refuse treatment. And why do they refuse? Because lots of psychiatric treatment is crap, it is abusive and horrible.


So put the lunatics in charge of the asylum?


Maybe we should! If we had patients helping to manage services, it would guarantee better services. I think patients should protest more and there should be more progressive services, like the one in Bradford where they have patients - "service users" as they call them - sitting on psychiatric team meetings, involved in decisions.


What makes you identify with the patients?


Basically in the space of a few years in my late twenties, my father was killed in a car smash, I got divorced, my brother Andrew committed suicide and I became depressed. People are nervous about the influence of the family: a psychologist once told me my research was dangerous, that I was reviving the idea that families cause psychosis. The thing is, getting from one end of your life to the other is about negotiating a series of obstacles. Some find it more difficult than others. I wanted to get away from the idea that we are a professional elite who have all the answers. It's not how I feel. And to some extent I talk about my own experiences as an illustration of that. But it's deeply difficult to talk about. As I talk I feel this emotional knot.


And did you seek psychiatric help?


Yes. It was an amazing experience. It was scary. I remember sitting in the waiting room. I remember the anxiety of sitting there and wondering what people were thinking of me. They must think I'm mad. Do they think I'm weird? And trying to look normal by holding a big academic textbook! Then I thought: "This is what people go through waiting to see me."

I hope you found this interesting......
Ed


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poster:ed_uk thread:410528
URL: http://www.dr-bob.org/babble/20041029/msgs/410528.html