What is an ARMS?

ARMS stands for ‘at risk mental state’ and is a term used to describe people who are at a high risk of developing psychosis. The aim of identifying people with ARMS is to provide intervention as early as possible in order to decrease the severity of any psychotic illness that does occur and/or decrease the likelihood of one developing. Early Intervention in Psychosis services are more and more taking on people who have an ARMS. Sometime the terms ‘prodromal psychosis’ or “prodrome” are used interchangeable with ARMS, though there are subtle differences.

Who has an ARMS?
People are deemed to have an at risk mental state if they don’t meet the diagnostic criteria for any psychotic disorder but show the following signs:

  • Unexplained distress and agitation
  • Are within the age range when psychotic symptoms are most likely to occur
  • Recent decline in social functioning (e.g. social isolation)
  • A strong family history of psychosis
  • Very mild or brief (transient) psychotic symptoms
  • Having associated conditions such as Schizotypal Personality Disorder

What can be done to treat people with an ARMS?

  • CBT for psychosis has been shown to be very helpful in decreasing both distress and the number of people going on to develop a psychotic disorder.
  • Integrated therapies or counselling
  • Sometime it’s deemed appropriate to start an antipsychotic medication early on in order to prevent psychosis occurring.

I think ARMS is an interesting development in the world of mental health and it poses a number of questions. Like is it possible to identify risk factors for other disorders? Could we be looking out for early markers for mood and anxiety disorders also? Also, although this approach allows for early detection, something that’s of particular importance with psychosis due to the cognitive decline linked to it, is it right to start people who may never develop psychosis on potent medications like antipsychotics?

I hope this has been helpful. What do you think about ARMS?

Life update #3

I don’t feel so great.

The last two days have seen me keep breaking down and crying (very unlike me). I’m just so stressed out. I can’t even identify what in particular is making me so stressed, it’s just a whole body feeling.

I saw my therapist earlier today and she praised me for still going. She said as much as it felt like I wasn’t managing it, I have managed it and that’s the thing to focus on. Sometimes I leave our sessions feeling more positive but, whilst I was happy she was there, when she left, I broke down again. It’s like I can’t show my team when I’m struggling so they assume I’m fine (I think).

I’m worrying about things again. Like how certain people from the hospital are keeping tabs on me as someone who’s had “extra-psychological experiences” I think I’ve made up that term but it seems accurate. I can’t leave the house currently. A friend today told me I’m being paranoid but I can’t separate anxiety from paranoia. I’m stuck wondering if I need to contact my mental health team or not (my parents are still away).

The worst thing about having an illness that takes your insight away is you’re never sure if you’re sick or not.

Bipolar Mood Scales

In The UK there is a charity known as “BipolarUK” who provide, on their website, a mood scale for people with bipolar that takes into account both depression and mania. This is great as most mood scales top out as ten being the number to aim for, as “happy” or “content”, but for people with bipolar, our mood can overshoot that…by a lot.

This is the scale provided by BPUK

It’s quite cool how it shows what counts as balanced mood – as this can be difficult for people with bipolar to figure out “am I happy or hypomanic?”, “am I sad or depressed”. I have two main problems with it. 1. It doesn’t account for mixed episodes, though to be fair, this would be very hard to do. 2. Everyone is different. The examples listed are quite specific. In severe depression ‘no movement’ suggests catatonia when not everyone who’s severely depressed experiences this. Mania lists “vindictive(ness)” which is subjective and not always the case, some people who are manic may be irritable but overall very charming and “religious delusions” is very specific. Lots of people have grandiose delusions of a different type, or persecutory delusions.

It is, however, a great baseline for the creation of your own mood scales. I adapted mine so that it looks like my own relapse signature:

  • 10 – (Mania) Psychosis, delusions of grandeur and/or persecution, overspending, loss of insight, no sense of danger, need to be hospitalised
  • 9 – (Mania) Little sleep (-3 hrs), talking very fast, constant movement, pacing and agitation, paranoid and reckless, euphoria
  • 8 – (Hypomania) – High levels of confidence and self esteem, racing thoughts, increased speech, unproductive tasks and many unfinished products, risky behaviour
  • 7 – (Hypomania) – Sense of happiness and expansive mood, irritability, excessive productive and unproductive tasks, talkative, exercising a lot
  • 6 – (Balanced mood) – Good self esteem, chatty, productive, content, optimistic
  • 5 – (Balanced mood) – No symptoms, content, balanced mood, good and bad days
  • 4 – (Balanced mood) – Slightly irritable, withdrawn, poor concentration
  • 3 – (Mild/moderate depression) – Anxiety, panic attacks, very poor concentration and memory, tearfulness
  • 2 – (Mild/moderate depression) – Everything seems unenjoyable, sleeping too much or insomnia, loss of appetite
  • 1 – (Severe depression) – Suicidal ideation, hopelessness, guilty, can’t go out or get out of bed, no emotion (numbed)
  • 0 – (Severe depression) – Actively suicidal/catatonic

What do you think of the mood scale? Helpful or not? What does your relapse signature look like?

Medication Monday: Equasym XL

On to the second medication I was ever prescribed! Equasym XL.

Equasym belongs to a class of drugs called Stimulants, and a specific group of stimulants known as methylphenidate, the most commonly known of which is Ritalin. Methylphenidate is one type of medication used to treat those with ADHD, and the ‘XL’ part of the name in Equasym refers to extended released, meaning that the treatment works for longer throughout the day. No one is quite sure how or why stimulants work for ADHD but they are very effective. There is a potential to abuse methylphenidate and so it is a controlled substance. They cannot be prescribed (in the UK) by a GP and need to be given to you directly from a psychiatrist. I once lost a packet of mine and was instructed to inform the police as they are also sold as street drugs.

I was given medication for my ADHD when I was around 14/15. It was intended to help with extreme inattentiveness and some impulsivity I was showing around that age. I was diagnosed with the “inattentive” subtype of ADHD. At first the starting dose (10mg) seemed to be working a bit, but not much, and so we increased the dose under guidance from my psychiatrist to 20mg. This changed my whole life. I could suddenly concentrate at school and was more motivated to do so, my parents remarked that I could focus better one conversations and not drift off in the middle of them, I stopped getting in trouble for “not listening/paying attention”. It was like a miracle drug! Except for the downsides…

Methylphenidate makes you focus, but doesn’t decide what to let you focus on. That meant if I took it and then focused on something other than my homework, I would get that thing done at my homework’s expense. I was also a very anxious child and when I focused on that, it led to lots of overthinking and rumination. It also made my heart beat considerably faster and at times would give me palpitations, which weren’t fun.

I kept taking methylphenidate on and off for years. Finally it was time to transition out of child and adolescent mental health services and into the adult mental health team. It was not a smooth transition. I went off to university and used up the last of my meds to good effect. Now I had to wait months to be seen by a new psychiatrist to get a new prescription. The consultation was a nightmare, the new psychiatrist was extremely eccentric and anti-drug. He informed me that he would not prescribe without being reassessed for ADHD at the local ADHD clinic, despite having ample evidence of my diagnosis, and compared me to a drug addict. I gritted my teeth and went, with my diagnosis being confirmed. The psychiatrist now lamented to me about how experiments had been done on rats and their ventricles had shrank so as he ‘reluctantly’ handed me my prescription, he told me “I’ll see you in a few years when you have psychosis”. I want to make one thing really clear, yes I did end up having psychosis (MANY years later) but it was in no way linked to a drug I took sparingly as a child, a drug that thousands of people take with no problems. I have a family history.

After my first episode of mania and psychosis, I tried to go back to university and found my concentration issues really pronounced. Some of this may have been due to recovery after the trauma my brain had experienced, but I had a feeling some of it was ADHD related. My new (very nice) psychiatrist explained to me that she didn’t want to prescribe it currently because it is contra-indicated in people with mania and/or psychosis but it wasn’t a closed conversation. Unfortunately my mental health continued to be unstable for the next year and my new, new psychiatrist, after telling me she would look into it, will not prescribe it for the same reasons. So I’m left a little stuck. I understand the rationale behind these decisions but I also would like, if I could, to start on a low dose and just see if I could handle it. I am, after all, on an antipsychotic and mood stabiliser. For now, all I can do is wait for my health to be stable and see if anyone will revisit it with me in the future.

A new understanding of mental illness

Thomas Insel talking about a new understanding of mental illness

As part of an online course I am doing, I came across this video of Thomas Insel, Director of the National Institute of Mental Health, and his insightful talk on mental health. Thomas talks about how the number of deaths from physical health problems have dramatically reduced and how we might be able to do the same for the (very high number of) deaths due to mental illness.

Here are somethings that stuck out to me whilst watching:

  • There are 38,000 suicides each year in the US, 1 every 15 minutes
  • It is the 3rd most common cause of death in 15-25 year olds and 90% of suicides are link to mental illness
  • There is ongoing debate about whether or not mental illnesses are disorders of the mind or of behaviour. Thomas views them instead as disorders of the brain
  • This is supported by the role of drugs in mental illness and the effectiveness of medications suggesting chemical imbalances within the brain
  • For many disorders we don’t have an in-depth understanding of why they are but we know a little bit about how circuitry is different in these people. This is called the human connectome – the wiring diagram of the brain.
  • In schizophrenia there is evidence for less grey matter and this decreases as people age. This is normal to some degree but in schizophrenia, it overshoots the mark and crosses a threshold. When this threshold is crossed, it is seen as a disorder.
  • Research shows that for conditions such as parkinson’s, there are changes early on in the brain that allow for early detection and intervention. The symptoms of parkinson’s are the last part of the disease’s life cycle to show up. In psychiatry, we wait for symptoms to show, despite evidence that grey matter is significantly reduced in children who go on to develop schizophrenia. Is this then really early detection and intervention?

What do you think of the video? Do you agree with Thomas’s view? What stuck out to you?

The problem with "you don't LOOK ______"

This topic has come up for me lately when reading some of my notes from an old psychiatrist. She noted I had a diagnosis of Asperger’s (now just called autism or ASD) but, in her view, “I have to say, this wasn’t particularly evident”, citing my appropriate humour. Here’s the thing.

There’s no one way someone with ASD or other conditions act, behave and come across. We are all individuals. This professional had never done a formal assessment for autism with me, she didn’t know the sensory issues I have, the trouble with socialising, my black and white thinking (which did some up more later on) the fact I was sent to years of therapy to gain social skills. She even noted (as every professional seems to like to write down) that my eye contact was poor. I have, on the other hand, not had much problem with humour, growing up in a house where humour was thrown around regularly, I’ve always had a good sense of it. Does this make me not autistic? No. Is this even in the criteria for autism. No.

This is a wider problem than just professionals, I’ve heard stuff thrown around by the general public, comments about others such as “well, you don’t seem like a schizophrenic” or ” you don’t look autistic”, or, dangerously “you don’t look like you have an eating disorder”. This is usually because they are basing their understanding of these conditions on an incorrect paradigm they’ve formed. Maybe they watched a film with a character who had one of these conditions, maybe a friend of a friend has a child with one of them. That forms the outline in their mind of what every person with that condition should seem, look and behave like. It doesn’t take into account individuality at all.

This is a harmful practise, it might mean people are under-diagnosed if a professional doesn’t assess them properly or take them seriously (hopefully unusual but not unheard of). It can mean that people who struggle with the knowledge they have a condition further stigmatise themselves or even doubt their diagnosis. They might go off their meds and/or become sick because of it. For some people, that condition is part of their identity and outwardly doubting it on limited information can have a major impact on how they view themselves.

I have a good sense of humour, I’m not particularly disorganised in my speech when I become unwell. I am autistic, I have schizoaffective. These things are not mutually exclusive.

Has anyone ever said a similar thing about you? Have you ever heard someone doubt a diagnosis because of their own experiences? I’d like to hear it if you have.

Life Update #2

My parents have been gone now for 3/4 days and I am not coping that well. I’m highly anxious, I have no appetite (and I’m on antipsychotics!!), I’ve not showered, changed clothes or left the house in that time. In fact I’ve barely left my room.

My aunt is here and I’m stressed trying to keep my cats away from her dog. I also have the feeling she’s a bit put out that I’m spending 0 time with her or my grandparents, but I just…can’t? It’s 8 days to go before my parents get back and I’m barely getting by. Will I get better at this? Or will it just get worse? My older sister is coming up today over the weekend so that might help a bit, though she can be a bit overwhelming at times.

I saw my therapist yesterday and promptly forgot all she told me other than one thing: Positive affirmations. I chose three, “you got this!”, “you have no power over me” (from the Labyrinth and in relation to my intrusive thoughts, and “all is well” (a spin on the last line in Harry Potter because I’m a nerd). She said to write them down and pin them up somewhere I can see them everyday. I think I’ll try that later one.

My CPN (community psychiatric nurse and my care coordinator) came out today to see how I was doing. We discussed something that’s been giving me terrible anxiety – my diagnosis. So, I was diagnosed, as most of you know, with Schizoaffective disorder when I was last in the hospital. In fact I was diagnosed with it twice. Aloud anyway. The problem? I’ve never seen it written down as fact. That doesn’t mean it’s not in my notes but I’ve not seen it. What I have seen is ‘psychotic spectrum disorder’ (of which SZA is a type), but thats an overarching term and not very specific. My CPN said she’d have a word with my psychiatrist and that requesting an exact diagnosis is not an unreasonable thing to ask for or to get. However, it doesn’t stop my anxiety in the meantime. I know diagnosis plays a small role in treatment but I am one of those very rigid, black and white thinkers who need boxes and categories and rules to feel safe and understand my own experiences. In addition, the service I’m with specialises in early intervention for psychosis, that means they can only keep you on for three years, at which point I’ll be transitioned to the regular adult community mental health team and I’d like to have a firm diagnosis that can be handed over. Here’s hoping I’m just overreacting (which is likely) and my pdoc can just confirm things for me.

I promised my CPN I would shower and change over the weekend, eat little and often and on Monday, come for a walk with her in my village, just to get me out the house. Any one of those things feels overwhelming at the minute but I’m pressing on.

Hope you all are doing well!

What is OCD?

I thought I’d write about my other mental health diagnosis; OCD.

What is OCD?

OCD is an anxiety disorder comprised of two main elements: Obsessions and compulsions.

Obsessions are unwanted thoughts, images and urges that cause anxiety for the person experiencing them. These thoughts may include:

  • Harm OCD, where people either think they will, or have already hurt someone or something else.
  • Thoughts of a sexual nature that may be distressing, particularly if centred around family or children. Some people may worry that they are having thoughts about people of a different gender than they are usually orientated towards.
  • Religious or blasphemous thoughts.
  • Fears about contamination; that they may contract a certain disease or are spreading one.
  • Obsessions with symmetry, a preoccupation with patterns and orders

Whilst obsessions around symmetry and contamination are fairly well known due to their portrayal in the media and the more obvious compulsions related to them, it is obsessions of a violent, religious and sexual nature that are less talked about, more stigmatised and less understood.

Compulsions are actions or behaviours that a person feels compelled to do in response to their obsessive thoughts. They may include:

  • Washing hands and cleaning excessively, usually in response to contamination obsessions.
  • lining things up, making them symmetrical or putting them in a certain order
  • The need to touch things in a certain way
  • Seeking reassurance from others in order to combat obsessive thoughts, e.g. “I’ve not hurt anyone have I?”
  • Checking behaviours e.g. checking many times that the door is locked or the oven has been turned off.
  • Mental compulsions which seek to correct or neutralise intrusive thoughts/images, such as repeating words over and over in your head or outloud.

Intrusive thoughts and Delusions
Sometimes it can be difficult to extrapolate what is an obsessive thought and what is delusion, particularly in those who have both OCD and a psychotic disorder. Take for example someone who has a delusion they have hurt some one and someone who has an obsessive thought about having hurt someone. These thought may be equally vivid but there are differences. For one thing, delusions don’t usually involve repetitive compulsions in order to be neutralised. Secondly, delusions are fixed and rigid beliefs, usually people with OCD know they are being illogical but can’t help the thoughts or associated anxiety. Often you can get them to question their beliefs.

Types of OCD

There are different forms of OCD and OCD related disorders, sometimes known as “cousin” disorders. Some people think they should sit on the OCD spectrum. They include:

  • Pure “O” – This is a recognised form of OCD where there are no, or little, signs of external compulsions but there are unwanted and intrusive obsessional thoughts, images and/or urges. Sometimes people with pure O engage in mental compulsions as discussed above.
  • CSP (compulsive skin picking) and trichotillomania (pulling out hair)
  • Hoarding – where you keep and collect a large number of things to the extent it interferes with your life.
  • BDD – Body dysmorphic disorder where someone has repeated obsessive thoughts about the way they look and perceived flaws on their body. Compulsions related to how they look may accompany these.
  • OCPD – obsessive compulsive personality disorder – this is similar in some ways to OCD but it is its own condition

Treatments for OCD

There are ways to help people with OCD. These might include:

  • CBT (cognitive behavioural therapy)
  • A type of exposure therapy designed for OCD called exposure and response prevention (ERP), which helps people confront their fears and avoid submitting to compulsive behaviours.
  • Medications, usually antidepressants and primarily a class of antidepressants known as SSRIs. These often have to be at quite a high dosage (higher than those used to treat mood) in order to be effective for OCD.

My experiences with OCD.

I was diagnosed with OCD at a young age. I can remember have obsessions and compulsions at around age 8. At that age, I was sent to a Church of England school, and so they were mainly religious in form and would involved blasphemous thoughts and repeating phrases such as “I’m sorry, God” over and over in my head or aloud. As I got older, and moved away from from religion, they took the form of violent thoughts and harm OCD, which focused on my family and animals. I regularly get thoughts and urges to hurt my cats or to push people in front of trains or stab my own mother. These thoughts might be shocking to hear about, but they’re common, they don’t make me dangerous and they need to be talked about. My compulsions are mainly counting, touching things (usually wood), mental compulsions and seeking reassurance as well as some checking behaviours. I did initially get some, very limited, relief from Sertraline (Zoloft), a type of SSRI, but ending up not being able to take it. I tried CBT in the past for OCD and was unsuccessful but am having some breakthroughs now at the age of 26 with my current therapist. It’s a hard thing to cope with, especially when you have additional diagnoses but it’s a daily battle I’m used to fighting and I don’t plan to stop.

If you need help for your OCD, check out websites such as OCD action and the international OCD foundation!

My experience with Home Treatment

Here in the UK we have a great service in some areas of the country that is described as an ‘alternative to hospital’. They’re known as the home treatment team (HTT) and like the name suggests, they come to visit you in your home and consist of doctors, nurses and social workers. The home treatment team kicks in when you’re referred to their service, usually because you’re in crisis and on the borderline of being hospitalised.

“We provide an early referral service for community teams to support patients either in crisis or to prevent a further deterioration of their mental health. The Home Treatment teams work closely with the Adult inpatient wards to ensure they identify patients who can continue their treatment at home and facilitate an early discharge. The service aims to empower and enable patients and their carers to take an active role in their treatment.”

Good things about Home Treatment

  • The doctors can prescribe emergency medication for you without you having to go to a hospital and wait for hours to see a duty doctor.
  • They can see you in your own home so if you find it difficult to leave the house or attend appointments, you’ll still be seen.
  • They can potentially stop you from becoming hospitalised by giving ongoing support in the community, their goal is to keep you at home.
  • Even if you feel okay or not up to seeing them on a particular day, they can arrange a phone call to check in with you.
  • If you need to be hospitalised, they can ring around and stay with you whilst they look for beds or take you to a crisis suite.
  • Because they see you daily, they can respond very very quickly to any decline in your mental health.
  • They are usually also who you are initially discharged to after coming out of hospital and can help you adjust to being back at home.
  • You may be discharged early if you agree to Home Treatment (I was at my last admission).

Not so great things about Home Treatment

  • They’re incredibly busy and can’t guarantee you’ll see the same people, so you may see people for 2 weeks and have to repeat your story to a different person each time. This I found particularly hard because of my ASD.
  • They can feel intrusive. Sometimes your home is your sanctuary and having people come in to your home who you don’t know can make you feel invaded. This is particularly a problem when I am already paranoid.
  • It can be really hard work to talk about your mental health to someone every single day, I found it wore me out and I would clam up and speak as little as possible.
  • This may be a ‘good’ thing for some people but once, home treatment were put in place to ensure I took my medication. I found this very uncomfortable and unfair at the time.

Overall, there are more positives to home treatment than not, however, I always resist when they try and refer me to them. The last time I was ill, I repeatedly refused to see them and was just able to stay out of hospital due to an increase in medication. However, they have kept me out of hospital before during a mixed episode, which quite a feat. They have also supported me each time I’ve been discharged from hospital and I think it was helpful having some input after being in such an intensive environment for so long. My local team also takes into account that I don’t like new people and try and send the same people to my house as much as possible, which I really appreciate.

Have you had any experiences with home treatment? Is there a service like this where you live, if not, would you like there to be?