An Open Dialogue around ‘Psychosis’

“The deepest hunger of the human heart is to be understood” Stephen Covey

Psychosis_hand

Cabiria, 1914 (from a silent movie by Giovanni Pastroni). Trying to capture how terrifying Psychosis sometimes feels like, which is difficult and the clip that goes with this photo reminded me of the experience.

In November 2014 I went to the launch of the lengthy report “Understanding Psychosis and Schizophrenia” by the British Psychological Society (BPS) in London. There I got to meet and hear from some of the top experts and clinical Psychologists in the UK. A revised version was published in 2017 [1].

‘Psychosis’ is a loss of touch with reality, which is usually temporary. Because the general population don’t understand it, they can overreact. The person themselves may feel quite confused & scared. Especially if it’s their 1st experience. It can involve unusual perceptions e.g. the person feels they are under attack from evil and the need to protect themselves. In my experience, how I protected myself was influenced by religious upbringing. I even started to go to Latin mass to try and calm my brain down. While some would have frowned upon that at the time, for me it was a coping mechanism. I only occasionally go to a church these days. Usually to light a candle and to sit in silence for a while.

As an example of one of my “psychotic breaks”, in my last experience I decided that the town I live in, which is prone to flooding as it is built on a river, was going to become immersed in water. I checked into a hotel that was a few stories high & took a bus to a ‘safer’, inland county. At the time I was frightened. It wasn’t based on reality but could have been based on news reports and worries about climate change. Stress and lack of sleep would have been a trigger, plus the fact that I was still going through drug withdrawal. It took at least two years to get the main effects of long term use of prescribed psychotropic drugs out of my system and I was left with long term sleep issues, the effects of which I still feel to this day.

Psychosis can be triggered by anti-depressant use and severe lack of sleep / stress [2]. I had been on anti-depressants for anxiety / panic attacks for 3 years when I had a ‘psychotic break’ in August 2008. Other illicit drugs can also trigger psychosis e.g. skunk cannabis [3].

Trying to make sense of the symptoms can help. In the context of the person’s life. As through making sense of experiences or learning to process them, a person is more likely to recover.

Usually the people around you will not understand and might not be supportive. I went through my last ‘psychotic break’ alone (2012). I would not recommend that but maybe getting through it alone is why I no longer fear it. There was also a Spiritual aspect to the experience and I wish I kept notes at the time to give me more insight into what I was going through. In my terrified state, particularly at night time, with no support around me, I used the online work of Sean Blackwell to help me through. “Bipolar or Waking up?” [4, 5, 6]. I do believe this was more of an awakening and a spiritual journey. A part of my own evolution as a soul on this planet.

A significant percentage of people hear voices and for many this is not a problem. If the person hears voices that are distressing or ask them to harm themselves or others and the person finds this overwhelming, they would need help and support in coping with the voices. There are people who have managed to integrate their voices into their lives, without been affected negatively by them e.g. Eleanor Longden [7] , Jacqui Dillon [8] and Rai Waddingham [9]. Dutch Psychiatrist Dr Marius Romme has also done a lot of great work in the Hearing Voices Movement [10]. Some children also hear voices and may need support.

Others experience hallucinations. If the hallucinations affect a persons quality of life, including ability to work, sleep and relate with others, the person may need help in dealing with their experiences.

Open Dialogue

I’m a believer in the Open Dialogue approach, where the person should be involved as much as feasibly possible in decision making about their care or treatment plan [11, 12].

Open Dialogue includes the gathering of clinicians, family members, friends and other relevant persons for a joint discussion. It was started in Lapland by Jaakko Seikkula et al. It is also used in other countries eg the Parachute project in New York [13]. In West Cork a successful pilot project was implemented [14, 15]. It would be great to see widespread use of this approach. If a more traditional, backward approach is used it can lead to more dysfunction within a family and the fracturing of relationships, sometimes long term, in my experience. It is important to get the approach right at the start. Not everyone will want family involved in their care.

I write more about the trauma of what happened me in 2008 in the blog Anti-depressants are great, until you have an Adverse Drug Reaction, where I outline some of the things that would have helped at that crucial time. Because of the way people in ‘psychosis’ are treated, I ended up with Post Traumatic stress for the past decade, which is only starting to ease recently. It has improved via therapy and hard work on my self, but it is something that will probably always be there are a protective force in my life. A necessary hyper vigilance and a lack of trust in others!

I have learned as much as I can about what is helpful when a person is in distress. I’ve dedicated several years to learning via reading, listening to audio/visual presentations (of experts I respect), courses, conferences and various short training sessions. A summary version of what happened to me can be found under Other Relevant Resources at the end of this blog.

During my first ‘psychotic break’ (where I had not harmed myself or others) I needed:

  • truth and honesty about the anti-depressant drug I was on & its adverse effects (2)

  • An Open Dialogue approach

  • Re-assurance that my stay in the hospital was temporary ( the survival part of my brain was convinced I would be there for a very long time, possibly forever. This left me in a very distressed and agitated state and naturally so)

In places like Finland, where they employ the Open Dialogue approach and where prescribed psychoactive drugs are not the main form of treatment, they have proven that recovery is possible. They use early intervention and involve the person in decision making. In general, instead of the person ending up on disability, they go back to being productive members of society.

Below is now 89 yr old Prof Ivor Browne giving a talk in the National College of Ireland in 2015. As opposed to being “anti-drug”, Prof Ivor Browne believes in using the lowest dosage of tranquilizing drugs possible for as short a time as possible. Ivor explained that people need help in understanding the psychotic process. He also recognises the importance of therapeutic relationships, personal friendships and loving relationships, when it comes to healing from trauma and distress. What are referred to as “Anti-psychotics” e.g. Olanzapine, as mainly major tranquilizers.

Anti_psychotics

For people to have “Recovery spaces”, they need to be with supportive people who can tolerate, be patient and interact with the person in ‘Psychosis’. Soteria is a network of people in the UK promoting the development of drug-free and minimum medication therapeutic environments for people experiencing ‘psychosis’ or extreme states [16]. If a person is a carer for someone in emotional distress e.g. a family member, the long term goal should be to enable the person they are caring for.

The public have learned to associate the word ‘psychosis’ with violence and there is not necessarily a link, unless drugs or alcohol are involved [17, 18]. That can include prescribed psychotropic substances or withdrawal from these drugs [19].

People in distress need hope that they can recover and heal. Education from reliable, unbiased sources is an important part of that healing journey. As are supportive and understanding people who can hold space for the person in distress. These support networks also need education around Psychosis, what is helpful and what is not. Being judgemental, getting into arguments with the person, being critical and dismissive of their experience is usually unhelpful. Trying to stay calm and creating a calm space for the person, where they are not over stimulated, might be helpful. Everyone is an individual and has their own unique journey and experience.

Note: This blog is not medical advice and is mainly based on my own experience. But also on my extensive interest and learning in the whole area. Do not stop or change prescribed psychotropic drugs without advice, due to the dangers of withdrawal. Any changes need to be made slowly, under the supervision of an expert in this field. At the start of my journey I was never given that advice from the ‘experts’ I was dealing with and this delayed my healing journey.

Minor and major tranquilizers did help me at times e.g. with sleep, which can help restore some normality. But overall, in hindsight, I found that the large cocktail of drugs I was on (over a 3 year period) fueled symptoms, as opposed to ‘curing’ them. “The ethical use of psychotropic drugs is perhaps the single most important aspect of Psychiatric care that requires urgent attention” Dr Phil Thomas [20, 21].

References

[1] Understanding Psychosis and Schizophrenia, revised version 2017 ~

https://www.bps.org.uk/system/files/user-files/Division%20of%20Clinical%20Psychology/public/CAT-1657.pdf (Edited by Anne Cooke)

[2] Antidepressant-associated Mania and Psychosis resulting in Psychiatric admissions. Yale study (2001) www.ncbi.nlm.nih.gov/pubmed/11235925

[3] Smoking skunk cannabis triples risk of serious psychotic episode, says research, 2015 ~

https://www.theguardian.com/society/2015/feb/16/skunk-cannabis-triples-risk-psychotic-episodes-study

[4] Am I Bipolar or Waking Up? Sean Blackwell, 2011 ~

http://www.amazon.com/Am-I-Bipolar-Waking-Up/dp/1461178258

[5] Sean Blackwell’s work ~ www.youtube.com/user/bipolarorwakingup

[6] Corrina Rachel speaking to Sean Blackwell about Bipolar ~

www.youtube.com/watch?v=WLIeS6idzD4

[7] TED video by Eleanor Longden (Voice Hearing) ~

www.ted.com/talks/eleanor_longden_the_voices_in_my_head?language=en

[8] Jacqui Dillon (Voice Hearing) ~

www.rte.ie/radio1/doconone/radio-documentary-sounds-mad-hearing-voices-psychology.html

[9] Rai Waddingham ~ http://www.behindthelabel.co.uk/

[10] Hearing Voices Network ~ www.hearing-voices.org

[11] OPEN DIALOGUE: an alternative Finnish approach to healing psychosis (by Daniel Mackler) ~

https://www.youtube.com/watch?v=HDVhZHJagfQ

[12] A collection of resources on Open Dialogue and Open Dialogue practices ~

http://willhall.net/opendialogue/

[13] New York ‘Parachute’ programme for people with acute mental distress lands in the UK ~

https://www.theguardian.com/society/2015/oct/20/parachute-therapy-psychosis-new-york-uk

[14] Mental health pilot focus of Finnish film ‘Open Dialogue’ ~

http://www.irishexaminer.com/ireland/mental-health-pilot-focus-of-finnish-film-open-dialogue-393492.html

[15] A fresh approach to mental health ~
http://www.irishexaminer.com/lifestyle/features/a-fresh-approach-to-mental-health-396031.html

[16] Soteria ~ www.soterianetwork.org.uk

[17] ‘Mental disorders’ are neither necessary nor sufficient causes of violence ~ 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1525086/

[18] Dispelling the Myth of Violence and Mental Illness ~

https://psychcentral.com/archives/violence.htm

[19] Prescription Drugs Associated with Reports of Violence Towards Others

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0015337

[20] Psychiatry in Context : Experience, Meaning & Communities by Dr Philip Thomas

https://www.amazon.com/Psychiatry-Context-Experience-Meaning-Communities/dp/1906254729

Dr Philip Thomas highlights the limitations of neuroscience in explaining Psychosis or distress. He also explores how Racism plays a key role in many black people’s experience of Psychosis.

[21] My review of this book ~ www.goodreads.com/user/show/46943899-anne

This review was published in the Journal of Critical Psychology, Counselling and Psychotherapy (Volume 16, Number 1, March 2016)

Other relevant Resources

* ‘I was unaware of potential adverse effects to my prescribed antidepressants’

https://www.independent.ie/life/health-wellbeing/mental-health/aines-story-i-was-unaware-of-potential-adverse-effects-to-my-prescribed-antidepressants-31218347.html

* One woman’s account of suffering from Psychosis ~

www.todayfm.com/One-womans-account-of-sufferinbg-from-psychosis

* Course ~ Caring for People with Psychosis and Schizophrenia (pharma funded which influences the advice given) ~

https://www.futurelearn.com/courses/caring-psychosis-schizophrenia

* Intervoice (International Hearing Voices Projects) ~ www.intervoiceonline.org

* Hearing Voices Network Ireland ~
http://hearingvoicesnetworkireland.ie/

* The Icarus Project ~ http://theicarusproject.net/

* CRAZYWISE – Official Extended Trailer ~ https://www.youtube.com/watch?v=iKfQd0bk214 

* Peter Lehmann “Recovery from Psychosis and Depression by Taking Psychiatric Drugs versus Recovery by Coming off Psychiatric Drugs”

www.peter-lehmann-publishing.com/articles/lehmann/pdf/recovery-from.pdf

* 8 Tips to Help Stop Ruminating ~
www.psychcentral.com/blog/archives/2014/02/16/8-tips-to-help-stop-ruminating

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Anti-depressants are great, until you have an Adverse Drug Reaction

I’ve suffered from anxiety most of my life. Towards the end of 2014 I started to get severe panic attacks. I was prescribed the antidepressant Citalopram and was on it for about three years. Initially it did seem to help. However, I was unaware of potential adverse effects.

In the summer of 2008, I went into mania and psychosis while on Citalopram. Psychosis is a temporary loss of touch with reality. There was a spiritual aspect to my experience. I wasn’t violent. I live in a culture that lacks empathy and understanding of such experiences, even more so in 2008.

I was never told that antidepressants could cause these symptoms, despite the evidence that is out there. There is a Yale study from 2001 which looked at Antidepressant-associated Mania and Psychosis resulting in Psychiatric admissions and found this to be the case for 8% of admissions [1]. That is 1 in 12 people. The conclusion of this study states that “the rate of admissions due to antidepressant-associated adverse behavioral effects remains significant.”. Knowing this would have helped immensely, especially with the social stigma!

I ended up admitted to a Psychiatric hospital without being involved in that decision. At a time of stress and vulnerability I expected genuine support. Instead I had the police on my doorstep and I was locked into a building for 3 weeks. Forced hospitalisation was a serious trauma and I continue to feel Post Traumatic Stress a decade later. For example, if I heard a truck reverse right now I would immediately have to go to the window to reassure myself that it’s not an ambulance coming to incarcerate me! So I’m left with hyper vigilance, on alert and with Post Traumatic Stress, despite being through counselling and therapy! It has started to ease with time but is now a necessary survival strategy. I had more insight into what was going on than people seemed to realise. The method used to force so called “help” upon me was more distressing than the symptoms I was experiencing.

I was quickly given the label “Bipolar”, which should not happen when a drug can be causing the symptoms. DSM-IV-TR “emphasizes that a diagnosis of Mania or Bipolar Disorder should not be made when the hypomania or mania first appears while the individual is taking a medication that can cause these symptoms” [2]. DSM-IV-TR (2000) ~ Diagnostic and Statistics Manual, 4th edition, text revision.

What was hospitalization like, without an Open Dialogue approach ?

It is hard to put the extreme distress I felt at the time into words but I will try. I felt dis-empowered, helpless, as if everyone had turned against me, constricted, caged, my freedom taken away, agitated, pressure of speech, my every word and action observed and judged, unsafe, distressed, no autonomy, frightened, scared, angry, violated, no one seemed to understand, no empathy, felt unfairly treated, trapped, felt like I would be there forever, could see no end, dignity taken away, disbelief, stressed, anxiety, in fight mode (seeing as flight was not an option ), heart racing, adrenaline pumping, found it hard to get some relief / respite from the deep distress and emotional pain I was in (other than sleep), traumatized, misunderstood. I couldn’t believe it was like this in the year 2008 and still is today.

An asylum is supposed to be a refuge, a sanctuary, a place of safety. The Acute Psychiatric Unit felt like the opposite. There was no awareness or understanding of what was really going on with me. I had been through a trauma and was in drug withdrawal from Citalopram, which I was asked to stop cold turkey. I was exhausted. This was not the place for me. Based on my reading over the last number of years a Soteria type crisis house would have been more suitable and healing. The Electric shock instructions on the walls of one of the offices didn’t help. Or the sign “ECT Suite” at the main entrance. Was it left there to scare and scar people ? There was no Electric shock Suite in the building.

My Occupational therapy notes said “Fear of detention based on father’s history” yet they use the most backward method to bring me to the hospital. 10 people at the house including 2 police, 2 ambulance drivers, 2 Psychiatric nurses and 4 ‘others’. A complete over-reaction to the situation. I hadn’t harmed myself or others and had no plans to do so.

“No wish to kill anyone” is in my admission notes ! As if all people in emotional distress are potential killers. The Psychiatrist that admitted me wrote “Having spoken to her she calmed down”. This was the crux of the problem. No one spoke to me properly and therapeutically. At one stage I wrote in my journal that I was wound up like a coil and that certain people wound me up again when I tried to unwind. I lost my job. I had bills to pay but the hospital was reluctant to let me out to pay them, while benefiting from my private health insurance ! It cost my private health insurer €23,000 for the State to have me put away ! The local Psychiatric unit was such a cold, uncaring, unsympathetic place to be. Surrounded by strangers. With very little empathy. Just their trolley of “potions and poisons”.

Brain damaging drugs

While some tranquilizers can offer relief to a person when used short-term, I was unnecessarily put on several strong and potentially damaging drugs long-term. Zyprexa (Olanzapine), Seroquel (Quetiapine), Lithium, Lamictal, Rivotril, sleeping pills etc 9 foolscap pages of prescriptions ! I did not want to face each day and spent a lot of time in bed due to the sedating nature of the drugs. I had a very poor Quality of Life. Doctors were oblivious to the drug’s iatrogenic effects. Iatrogenic means caused by treatment. I was heavily sedated for 3 years, until I finally woke up out of a drug induced haze and started to question things.

Turning Points

Luckily a few years into my journey and search for the truth, I was fortunate enough to make connections with other Psychiatric survivors, as well as some honest and dedicated medical professionals and Psychologists. Experienced experts who do not have conflicts of interest but who want the best possible outcomes for people in distress. People like Dr Terry Lynch, Prof Ivor Browne and clinical Psychologists in the UK ~ Lucy Johnstone, Anne Cooke and Peter Kinderman. I also studied the work of honest Psychiatrists Prof David Healy (who is also a Psychopharmacologist), Dr Peter Breggin and Dr Joanna Moncrieff.

One turning point was when I went to see Ivor Browne in February 2012. At that stage I had miraculously managed to come off all the drugs with no support and was down to 25 mg of Seroquel (a low dosage where the maximum is 800 mg). Ivor listened to my human story and gave me a new perspective. He worked in a methodical way and told me I was not “mentally ill”, which was quite liberating. Like a weight lifted off my shoulders. Born in 1929, with over 60 years experience in this field, Ivor is now in his 90th year.

My father’s experience

My very sane father unfortunately became a victim of this system in 1973. He was in and out of hospital throughout my childhood. In 1983 his symptoms seemed to disappear and did so up until his early death in 1993, age 52. As recently as 2012 I believed that Manic Depression / Bipolar was genetic as that is what I was conditioned to believe throughout my life. Then, in my first session with Prof Ivor Browne, I said that my father “also had Manic Depression” and I remember his “highs” an “lows”. Ivor dropped a bombshell that day that made me rethink the whole experience. He said “Your father was around in the era of medication as well !”. Based on my own personal experience, I realise the drugs can leave you so sedated that you don’t and won’t want to get out of bed. And can also drive a person into a high.

My father was a kind and gentle man, and deserved better than what he was put through. Up to 14 pills a days and several bouts of Electric shock. Which I now know was unnecessary. I admire how he kept going and rarely complained, unlike his daughter. His favourite saying was “It could be worse”. It also created a lot of stress from my mother and the family environment growing up. They both died young and never got to meet their 7 grandchildren.

What would have helped me through my crisis in 2008

It’s been a difficult 10 years. My healing journey was delayed by the trauma caused by a flawed biomedical approach to mental health. My career ended, which created another set of problems. The whole experience has affected some of my personal relationships and trust in others. Mainstream Psychiatry is very dis-empowering. After hospitalisation I had lost all confidence in myself.

The following would have made my distress a lot more easy to cope with ~

  • truth and honesty about the anti-depressant drug I was on and its adverse effects

  • An Open Dialogue approach, which I have written about elsewhere

  • Re-assurance that my stay in the hospital was temporary ( the survival part of my brain was convinced I would be there for a very long time, possibly forever. This left me in a very distressed and agitated state and naturally so)

  • Access to a Psychologist and to also to receive some counselling or Psychotherapy

  • Honesty about drug withdrawal and akathisia with proper advice on how to try to avoid this

  • Ethical use of the major tranquilizers at the lowest dosage possible for as short a time as possible. I probably needed them for about 2 weeks initially and to be taken off them correctly.


Coming off the drugs

Any changes to the drugs a person is on needs to be made slowly under the supervision of an expert. I am now off most of the drugs nearly seven years. In the first two years I was prone to relapse as my body readjusted to being off prescribed psychoactive drugs. I no longer go into mania / psychosis, which is a major step in my recovery journey. I use WRAP (Wellness Recovery Action Plan) and benefit from self-awareness, rest, yoga, meditation, exercise, nutrition, mindfulness, journaling and talk therapy. Support from others is vital.

When it comes to the initial anxiety I experienced I know it’s down to proper breathing, o2/Co2 levels in the blood, understanding the cause of panic, talk therapy and healthy lifestyle choices. I know I won’t find the answer in a bottle of pills as I’ve been down that road, for six years in total. The drugs have damaged me but I try to focus on the concept of neuroplasticity.

Access to my records under Freedom of Information

After receiving my hospital records I found it hard to trust anyone. I don’t really recommend requesting your notes unless you have good support around you, as it can be a traumatic experience reading them. The one thing that struck me about stuff that was written about me is the many factual errors. After 3 weeks locked away my escape route was via a transfer to a Private hospital in Dublin for another week. While I had a lot more freedom there e.g. Could go in the garden or even to Heuston train station to buy the paper, their notes more or less painted me as an academic failure even though I have numerous qualifications up to Masters Level. It shows how facts can be twisted in a person’s notes and misrepresent the person. I look forward to burning these fictional notes some day soon, as part of the healing process.

Conclusion

Being in the system and the consequences of that, including the stigma, discrimination and lack of understanding of others and the effects of the drugs, was the most traumatic part of the whole experience. In our society the general public have been indoctrinated into the biomedical model, affecting how those who have experienced mental health difficulties are perceived. Social stigma can be a trigger for the person and can seriously impact and slow down the recovery process.

What I went through since August 2008 (health issues, brain damage from the drugs which hits me in subtle ways, tardive dysphoria [3], insomnia, loss of career, disconnection from family, ongoing Post Traumatic Stress) is actually a catastrophic grief / bereavement. I sometimes need to pause and reflect on that aspect of the experience. To process the grief and accept the pain. For quite a while I have been stuck in a phase of anger. Some of it justified but on the downside the anger can keep me stuck. It’s taken a decade to process and integrate the experience.

While some may feel they had a positive Psychiatric experience, I remember my experience and the suffering of other Psychiatric survivors in the context of a system that has the potential to be very destructive to a person’s emotional well being. I also remember those that died. Any attempt to actively change such a system is met with resistance. I admire myself for hanging in there, and not becoming a statistic. The unbearable feelings do pass, if you can learn to sit with them or reach out for help. My rebellious nature helped me through.

I have seen the system from the inside out and it gave me a very different perspective. I can think about forgiveness if I know that others aren’t been potentially hurt or killed. But I find it difficult to forgive the current system knowing that the delusion continues and that prescription rates are going up year on year, including potential risks to the unborn.

{
Note Do not stop or change prescribed psychoactive drugs without consulting your prescriber, due to the dangers of withdrawal. Any changes need to take place under the supervision of an expert. What I write about is my own experience and is not medical advice. We all have our own unique journey. Samaritans are there to listen to people in distress ~ 116 123}

References
[1] Antidepressant-associated Mania and Psychosis resulting in Psychiatric admissions, Yale study (2001) www.ncbi.nlm.nih.gov/pubmed/11235925

[2]Suicidality, violence and mania caused by SSRIs: A review and analysis ~
http://breggin.com/wp-content/uploads/2005/01/31-49.pdf

[3] Tardive Dysphoria: Anti-depressants can turn mild/moderate Depression into a chronic condition ~
http://www.psychologytoday.com/blog/mad-in-america/201106/now-antidepressant-induced-chronic-depression-has-name-tardive-dysphoria

Other links that may be useful

* Psychopharmacologist & Psychiatrist Prof David Healy “Time to abandon evidence based medicine?” At 6 minutes he discusses the hiding of negative data from anti-depressant clinical trials ~
http://www.youtube.com/watch?v=A3YB59EKMKw

* Promoting awareness of the potential dangers of anti-depressants ~
http://antidepaware.co.uk/