Treatment resistant rapid cycling bi-polar disorder and people with learning disabilities
You have probably heard of bipolar disorder and have some understanding of what it is. I was quite shocked when I looked up some statistics! Apparently there are 1.3 million people with bipolar. But what is rapid cycling bipolar disorder?
'Rapid cycling is a pattern of frequent, distinct episodes in bipolar disorder. In rapid cycling, a person with the disorder experiences four or more episodes of mania or depression in one year. It can occur at any point in the course of bipolar disorder, and can come and go over many years depending on how well the illness is treated; it is not necessarily a "permanent" or indefinite pattern of episodes.' - WEBMD
It is estimated that 10 - 20% of the bipolar population have rapid cycling bipolar disorder but it far from clear how many people with learning disabilities have it. There is limited literature about this but one paper I found was really helpful:
Journal of Intellectual Disability Research/Volume 43, issue 5
Review: Rapid cycling bipolar affective disorder in people with intellectual disability: a systematic review - M. Vanstraelen and S.P. Tyrer
I have been working alongside people with learning disabilities for over 30 years. I can't exactly tell you how may people with learning disabilities I have met during these years but I have only met 2 individuals who had rapid cycling bipolar disorder. Also rapid cycling bipolar is more than often treatment resistant i.e. medication like Lithium or other mood stabilisers tend to be less effective. To demonstrate how this disorder can be so destructive to a persons well being I will give you the two case studies - name, age, where they live etc. have been changed.
I like movies and I chose these characters!
1990 - Rose
I met Rose in 1990 when I was a support worker. I was 19 at the time and had never heard of bipolar disorder. Rose was in her late 30's and was a lovely person. About two weeks into my time supporting Rose I saw some slight changes to her behaviour:
She started to laugh at every little thing
She started to follow me and other male staff around the house
She tried to help the staff to do the housework etc (unusual!)
She was absolutely lovely to be around, in fact I would call her 'happiness' infectious'. But then a week later we saw different picture that change dramatically:
She started to have trouble sleeping, even with Diazepam etc.
Within three days of being in this phase she was unable to sleep for around 3 days - her record for going without sleep was 7 days
She became increasingly irritable and gradually became attacking staff and her fellow residents
An example showing periods of rapid cycling bipolar disorder
Then after a week of I used to call being 'high' (now know it was mania) she started to change again, this time was the complete opposite of what we had seen - depression.
She stopped communicating in any form
Within four days she stopped eating and drinking
Within four days she wouldn't move without the staff supporting her to go to her bedroom etc.
This lasted for approximately two weeks in total with reaching the peak at 7 days. Then we started to see the 'normal' Rose back with us. But this only lasted for approximately three weeks and then she entered a 'manic' phase. Rose is a very interesting case, as she went through these 7 weeks cycles all year around, so valid were these cycles we could plan her holidays around them.
Sadly for Rose she had rapid cycling bipolar which was treatment resistant. She was prescribed Lithium and Tegretol and we didn't know what effect these medications had on her.
I last saw Rose in 1995 and the picture was the same. But I bumped into an old colleague about two years ago. The books were correct, symptoms lessened as she grew older. I wish Rose all the best for the future.
2019 - Jack
Jack was a person with a sever learning learning disability, was 24 years of age and a very energetic young man. He lived in a supported home with three other people. Jack was also autistic.
Jack was always a very pleasant young man who knew what he likes and dislikes exactly. When he wanted to leave an activity etc, he would just say finish or end. He had loads of interests like painting, cooking and playing ball.
Then suddenly it was reported that his behaviour became unmanageable and this was mainly due to his size, energy and age. He started to hit staff quite hard and they also noticed that he needed much less sleep than normal. Then after about 3 weeks he returned to his normal self. The house referred Jack to a psychiatrist.
He saw the psychiatrist about a month after referral and didn't prescribe anything but kept his case open. Then about another month later he started to have long periods of no energy, was sleeping a lot and generally only coming out of his bedroom for drinks and meals.
This period was then followed by an increased unmanageable period. This time he injured several staff and other people he lives with. Everyone was frightened of him. The psychiatrist and social worker visited him at home and immediately put him under section 2 of the Mental Health Act. He was admitted to an inpatient unit for people with learning disabilities. He was quickly given a provisional diagnosis of bipolar disorder and was prescribed lithium. That didn't appear to work, so add on other mood stabilisers like sodium valproate. But a year later the medications had not had a great impact on his life and he continued to have seven separate periods of depression or mania over one year. So the diagnosis was changed to rapid cycling bipolar disorder.
But things have changed since 1990 and other mediations were available. One particular medication called 'clozapine' have gathered a research base on treatment resistant schizophrenia and it had also successfully been introduced to treat and make a major difference to people with treatment resistant rapid cycling bipolar disorder. But 'clozapine' comes with some very serious side effects. So serious that if it was to be introduced Jack would need a blood test weekly, then two weekly and then end up on a monthly blood for whilst taking clozapine. In plain English I believe the research I last read was it lowered the immune system in 1% of people on clozapine and due to the risk of life most of this percentage are immediately taken off it.
Due to Jack being assessed as lacking capacity to make the decision about clozapine - his family and support staff were given information - both pro's and con's of clozapine. Although the Consultant Psychiatrist was the decision maker they held a best interests meeting. All agreed that it would be in Jacks best interests to take clozapine.
After a month of tests etc he was started on a small dose and then increased until a stabilising dose was reached.
I cannot tell you what an absolute difference to Jacks quality of life clozapine had made. I'm not pro or con medication but if it works and is reviewed regularly I don't have a problem with medication.
Just to repeat myself I cannot stress what difference this made to Jack. We are hoping to write up what a catalyst clozapine has been too engagement, activities and going home. Watch this space on when and if we get it published.
I would like to personally thank the whole multi-disciplinary team, especially the nurses, support worker, occupational therapists and especially the very brave doctor who put his signature at the bottom of the best interests form. I wish both Jack and Rose to a wonderful life and I often think about other of you with fond memories.