I don’t know about you, but when I was diagnosed, I was a little confused about what exactly Schizoaffective Disorder actually was. So I did three things: I asked four independent professionals, I asked other people with the diagnosis, and I did some online research of my own. What I got was…a whole load of conflicting answers, which was incredibly frustrating. After a while I was able to categorise these into three main schools of thought around SZA.
- Schizoaffective disorder is somewhere between Schizophrenia and Bipolar Disorder (or depression) on a linear continuum. It therefore encompasses some aspects of each but not necessarily all of them. People may also “lean” more to one end than the other. This was the first explanation I was given and seems to be favoured by professionals (in the UK anyway).
- Schizoaffective disorder is a duel diagnosis of Schizophrenia and a mood disorder (bipolar or depression). This was the favoured explanation by online communities with the disorder and is supported by the fact that if you took one element away, you would likely be diagnosed with the other one. For example, due to the perseverance and presentation of my psychosis, if I hadn’t had a mood element to my disorder, I would have been diagnosed with Schizophrenia and vice versa.
- From my online research I came across the third school of thought: that Schizoaffective is a disorder in it’s own right. This is supported by the fact that it has a general prognosis that is “better” than Schizophrenia and “worse” than Bipolar or depression (although this is very individual). It is posited as slightly more inclined towards Schizophrenia than mood disorders in that it is classed as a psychotic or schizophrenia spectrum disorder as opposed to a mood disorder.
What seems to be consistent across all explanations is that SZA has both elements of psychosis and of mood disturbances, hence the name. Schizo – referring to the psychotic element and Affective – referring to the mood element of the condition. There seems to be more than one type: Schizoaffective Bipolar type (or manic/mixed type) and Schizoaffective depressive type. What also seems to be persistent is the recommended treatment is an antipsychotic medication paired with either a mood stabiliser (for bipolar type) or an antidepressant (for depressive type). In addition, psychotic symptoms seems to echo mood disturbance. Manic people tend to have grandiose delusions and depressed people may have more persecutory delusions although this varies and I’ve certainly had both together at different times.
It’s a confusing diagnosis and one I’m getting used to still but I’m getting there. Despite the different opinions about what I actually have, it doesn’t change my own experiences or my treatment so really, it’s not of great importance.
I’d be interested to know which school of thought you subscribe to in the comments!
So what’s a depot?
A depot shot is an injectable form of (in this instance) an antipsychotic medication. It’s slow-release, which means instead of having to take oral medication every day, you only need the shot once every few weeks. My oral medication currently is Aripirazole (Abilify) and the depot version is called ‘Maintena’, which is fun because it’s clearly a play on maintenance of or maintaining mental health. My shot will be done by IM every 4 weeks at home by my nurse and after that at a depot clinic at my local mental health centre
Why go on a depot?
There are a few reasons why people might be on a depot. They might struggle with oral medication, need monitoring of taking their medication – something that’s much easier at a clinic every few weeks as opposed to at home every day – they may not like thinking about medication everyday or forget to take it. My doctors and my decision was based on a couple factors:
1. I have relapsed more than once from stopping my medication when I start to get unwell. Once I’ve stopped, I get much sicker quickly and it can be hard to get me back ON the medication to treat the episode.
2. I’ve already been in a position where a team has been sent to my house daily to ensure I take my medication as prescribed, which was a hassle for everyone.
3. I do not like taking my antipsychotics so I have an internal conflict every day that I take it, we feel it’s unlikely I will be long-term compliant with medication, even thought I know logically that is in my best interests.
4. When I stop taking my medication, I don’t tell anyone and so people are unaware of the risks and the fact I may be becoming unwell. My CPN (community psychiatric nurse – my care coordinator) gives me my depot so if I was not taking my medication, someone would be aware.
5. When I was first put on it, I was in hospital under a section (involuntary hold) and was backed into a corner as they could forcibly medicate me and the way they do that is by injection.
The main positive for me about being put on the depot is that it helps me instil some trust back in myself not to mess up with my medications, but also trust between me and my family/friends/mental health team, who won’t always be wondering ‘is he taking his meds?’. It also helps that I don’t have to think about it every day and there is some evidence to suggest that the side effects of my medication will be less on a depot due to the more steady level of it in my blood. I have found this to be the case in terms of akathisia (restlessness),
However, the thing with depots is, once they’re in, they’re in and you can’t get them out. So I was initially worried that if I had side effects from this new form or a dose adjustment, I can’t just stop because i felt it was all too much…which I suppose is the point. It still makes me uncomfortable though!
Overall I think it was probably the right thing to do at this point. I’d like to give myself at least 6 months – a year of stability and this is probably my best bet. So far I’ve need to up the dose due to breakthrough symptoms but otherwise have been a lot more stable.
So tomorrow is Christmas day. If you’re anything like me you’re feeling a bit of excitement, a bit of dread and very overwhelmed. The amount of emotional energy alone that Christmas involves means that anyone with a mental illness tomorrow is going to find some aspects of it hard. I thought I’d write a Christmas survival guide for all the others out there like me!
- Set boundaries. If possible, lets the people you’ll be spending Christmas with know in advance what you will and will not be doing on the day. As most conditions fluctuate, this might be difficult but remember you can change your mind and decide you are no longer willing or able to do something you said you could. This is okay and perfectly valid
- Remember that it’s your Christmas too. You should get some enjoyment out of the day, even if you have to achieve that by doing some ‘non-festive’ type things. (I will definitely be napping at some point!)
- Reach out to your loved ones if you’re not feeling great. If this isn’t possible, most major helplines, such as The Samaritans (116 123) in the UK, are open on Christmas day.
- Practise coping mechanisms. Learned anything useful in therapy? Mindfullness? Reality checking? Grounding techniques? Now’s the day to use them! If you haven’t, here you go: Mindfullness exercises, the 5-4-3-2-1 grounding technique
- Look after yourself – take time out, stay hydrated, take your meds, eat something.
Hopefully some of this is helpful to someone out there struggling. I’m wishing everyone a good holiday time and if you have any tips yourself, please add them in the comments!
Not talked about as often as ‘positive symptoms’, negative symptoms can pose just as much disruption to the lives of of those experiencing them. They often don’t respond to medication and can be difficult to distinguish from depression. Although there are arguable many negative symptoms, such as social isolation, often 5 in particular are noted:
- Blunted or flat Affect – reduced expression of emotion. May include an absence or lessoning of facial expression and a monotonous tone. Found in 2/3 of people with schizophrenia.
- Alogia – lack of spontaneous speech, also called ‘poverty of speech’. Can result in one word answers or muteness but may also present as slow or delayed responses.
- Avolition – lack of new or ongoing activities as well as reduced drive to perform activities. Can result in self neglect.
- Anhedonia – loss of pleasure in normally pleasurable activities. Also often seen in depression.
- Problems with Attention – notable difficulties with focus, attention and concentration. May struggle to follow a conversation. May also take the form of lack of social attentiveness
Today me and my parents went to look around the unit I’ll be admitted to after Christmas. I’m both hopeful and nervous as all heck about it all. Here are some things I learned:
. When I get there, I’ll have a named nurse, and OT and a peer support worker (all the patients share the latter two). Together they’ll work together in order to plan an individualised recovery plan.
. You have 4-6 weeks in which to settle in and then you’re ‘prescribed’ different interventions along with your medication and seen by the ward psychiatrist every 2 weeks.
. The average stay is 6 – 18 months.
. Staff will help with cooking, shopping, travel, jobs, tidying, washing etc until you are able to do them all independently
. There are ten residents, each with our own room but shared shower/bathroom areas
The countdown begins!
Abilify depot 400mg: for psychosis and mood
Lamotrigine/Lamictal 350mg: for mood and epilepsy
Diazepam: for psychotic catatonia and anxiety
Melatonin: for sleep
Statins: for high cholesterol
Things I would love to add back in but my pdoc refuses to prescribe due to the chance of mania and/or psychosis
Equasym XL: for ADHD
Fluoxetine: for depression
In my last hospital admission meant I spent almost 7 weeks in a PICU, and it was a surprisingly different experience than the admissions I had spent on acute wards. I thought I’d write about it to give others an idea of what it’s like – especially as they have a bit of a scary reputation.
“Psychiatric intensive care units provide mental health care and treatment for people whose acute distress, absconding risk and suicidal or challenging behaviour needs a secure environment beyond that which can normally be provided on an open psychiatric ward. High staffing ratios allow for intensive input to resolve issues quickly.”
Differences between PICU and acute wards:
Although both have a mix of acutely ill and sometimes disruptive people, the unit I was on had a mix of challenging, vulnerable and very disruptive patients. Often over time, you saw the more disruptive people calming down a bit and they were sometimes then transferred to acute wards. Sometimes the risk was too great for them to be on an acute ward or their behaviour would have been dangerous to others. All patients on the ward were there involuntarily.
The unit was open plan with security camera’s EVERYWHERE. When there were fights the footage could be played back and viewed by nursing staff. The yard was much more than a small smoking area, there was space to exercise, lay down and even play badminton. All rooms were individual with en suites as to decrease risk and disruption during the nights. The unit was very secure with several locked doors and a giant fence that I can tell you from experience was impossible to climb. It was basically inescapable. It was also a low stimulatory environment, which suited me especially due to having ASD.
I found the staff MUCH more understanding than on acute wards. They listened more, were more responsive and actually made sure you had contact from a designated staff member during each shift. There were also more staff to patient ratio. With only 9 beds on the ward, there were often 6 staff members around at any one time and they spent much more time ‘on the floor’ (outside the nurses station). The doctor also was much much more attentive, could be contacted by phone by my parents throughout the day and spoke to them personally despite being busy.
Overall, despite being acutely unwell, the unit suited my particular needs at the time and I had a better experience there than I have in other wards. Despite the challenging behaviour of some patients, I actually found it less chaotic than acute wards and not at all as scary as it first sounded!
There were a lot of options thrown up: Extra PRN antipsychotics, Carbamazapine instead of Lamotrigine (although my pdoc piped up at that and said she’s not had a great experience with using it as a mood stabiliser?), Lithium was finally mentioned and shot down (by me). Antidepressants were mentioned and shot down (by them). SO I still have no good plan for if I get really low again.
I feel tired as heck, what are everyone’s BP, SZ and SZA working drug cocktails?
I’m currently on a depot shot for my antipsychotic Abilify/Aripiprazole. I was initially on 300mg every month but started to become unwell again so my Dr and CPN recommended that I up the dose the the max available on the depot (400mg). This has been much better for me and bought be out of an episode that was getting very close to hospitalisation but unfortunately, I’m still getting breakthrough symptoms, especially in the week before my shot is due. My CPN had proposed that we change the dates slightly so that I get my shot every 26 days instead of monthly.
Here’s hoping that works! Is anyone else on an antipsychotic depot but experiences breakthrough symptoms when their next one is due?
The first time someone said to me I had SZA, I was in a little side room by the nurse’s station in the psych ward. I had been there for 5/6 weeks at the time and had grabbed the psychiatrist in charge of the ward after our weekly meeting. “I don’t understand something” I told him “everyone is saying I’m psychotic but my mood feels fine”. I was used to the idea I might experience psychosis if in a mood episode. He explained it to me using a lot of hand signals but summed up how schizoaffective combined elements of schizophrenia and (in my case) bipolar disorder. I laughed it off. Later that day, my favourite nurse commented the same.
I felt overwhelmed and confused as well as annoyed. At the time I lacked insight into my illness and didn’t realise I was unwell. For weeks I had been a paranoid wreck, convinced the government was interfering with my thoughts, that my family had been replaced by government agents and that myself and others were in imminent danger. I couldn’t understand why no one would believe me and why I was under section (involuntary hold). I felt frightened pretty much 24/7.
I started to refuse my medication, which my voices were telling me were poisoned, and my mental health declined further. I was told straight out – either I took medication or I would be forcibly injected with an older, typical class of antipsychotic. I had already seen two people on the ward badly react to this medication and was so afraid of being pinned down that I chose an injectable form of a medication I had had before – Abilify/Aripiprazole.
Within two weeks, I started to improve quite dramatically. I could make sense of what had been delusions and the voices died down. My thoughts also became clearer and I was less confused. My parents noted my ‘incongruent laughter’ had stopped and I was making more sense and was less frightened. I started to go on leave until I was adamant I no longer needed (or wanted) to be in hospital after 7 weeks there. At my discharge meeting, my psychiatrist explained again that it was clear from my admission that I had a psychotic spectrum disorder and with my history of manic episodes, this was (in his opinion) schizoaffective disorder.
At first I rejected this notion so strongly that I would only let people use the words ‘psychotic spectrum disorder’ around me as I was so strongly opposed to being ‘schizo’ anything. This, I can now see, was internalised stigma. I had my own notions about what being a person with a psychotic illness should be like and didn’t want to fit myself there beside them. Then I thought back to the others I had met in hospital who had been like me – delusional, unwell, and how friendly they were and how much better they got over time. I also started meeting with a peer support worker, someone who is successful and works everyday with people, despite having a psychotic illness themselves. Over time I’ve come to realise that my diagnosis isn’t something to hide from. It’s not even particularly important. It’s a guide to professionals regarding my treatment but it doesn’t alter me or my experiences in any way.