The diagnosis and treatment of schizoaffective disorder

I want to talk about diagnosis and treatment of schizoaffective disorder. I believe it isn’t talked about enough and many people don’t appreciate what a struggle it is to get diagnosed and then get effective treatment. Unlike bipolar and schizophrenia where most people know what they are, at least vaguely. This isn’t the case with schizoaffective disorder and obviously because I have it, I want to make people more aware of what it entails to live with it. Perhaps I’m hoping that if people understand what it’s like to struggle with something like this, then they might find more warmth and compassion when they come across someone who is fighting that battle. I hope my blog inspires empathy for any mental illness to be honest. So I’m going to go through some key facts about the diagnosis and treatment of this disorder, and I’ll try my best to explain each one. Please feel free to ask questions in the comments or message me directly.

Diagnosis

One thing I’ve found with people who have schizoaffective disorder is that almost all of them were misdiagnosed at first.

When I first started becoming unwell in my late teens I presented with depression. I was therefore unsurprisingly diagnosed with unipolar depression. (unipolar depression is just depression that a person has who does not have a bipolar aspect to their illness.) I was given antidepressants and sent away. Those antidepressants didn’t work so I tried a few until I found something that worked for my depression; finally I did and all was good (for a while).

I have always since my late teens had periods where I felt elated. I now recognise that as hypomania but because I felt so good during those periods I never presented to my doctor in this state. I never even thought to mention the fact that I might be “too happy”! That changed when I turned 26, whereupon I had my first full-blown manic episode. At first I was just elated and doing quite well – spending a lot of money, which isn’t good, but doing well at work and feeling really good about myself and life. My elation started to creep up and up. I started to hallucinate that there was a pony in the garden. I spoke about this a lot. I started to believe I had a very important spiritual mission to unite all the world's religions into one. I believed my partner (Rick at the time) was a Buddha and so was I, that we had phenomenal cosmic power. Trust me, there is only so long you can go on with these beliefs and talking about them before people start to notice! Finally it was work that gave me the final push. They said I didn’t seem well (which I thought was ridiculous) and sent me home to rest advising me to see a doctor.

A week later I needed a sick line and so reluctantly I went to see my GP. When I arrived for my appointment I remember I just kept talking and talking about religion and all sorts of things. The GP explained to me what mania was but I didn’t listen and she got an urgent referral to see a psychiatrist. I waited one more week with my GP phoning every day to see how I was and her trying to hurry the referral. Fortunately, even though I had some odd beliefs I wasn’t a danger to myself or anyone else. Eventually I saw the psychiatrist. A friend came with me to make sure I’d go and at this point nobody wanted to leave me alone. I sat down and started talking and within two minutes I was diagnosed with mania and told I had bipolar, I later found out type 1. It’s not that I didn’t believe this at the time, I just didn’t care. I had too many other ugent things to do than worry about that. Rather than go into hospital which I really didn’t want to do, I was given the intensive home treatment team, and my partner took some time off work to look after me. We started the task of finding the right medication(s) to fix me. During the time I was manic I was also hearing voices. This is not unusual for mania and it was assumed that when my mania went away that I would stop hearing the voices.

It took a good couple of months but eventually my mania did go away, in fact it crashed into depression. During the time I was depressed I was hearing voices and I assumed (without telling anyone) that it would go away when my depression lifted. My depression lifted and I was still hearing voices. I decided to tell someone. I had a psychiatrist, I had a CPN, but at this point I didn’t know either of them that well so I went to my GP (a different one this time). When I told him he seemed to panic. He asked me what the voices were saying, so I explained that mostly they were just talking about me and not to me but that it was still destressing, and that sometimes they asked me to do things that I didn’t want to do. He contacted my psychiatrist and I got an urgent appointment. Then in that appointment I was diagnosed with schizoaffective disorder (bipolar type) and psychosis. It is also possible to have schizoaffective disorder (depressive type) which is just without the manic symptoms.

I believe some people are misdiagnosed with schizophrenia if they present with the voices as their primary symptom and the mood disorder part is not noticed until later. This has happened to at least one other person I know. Either way once schizoaffective disorder is diagnosed the next stage is finding the right medication.

Medication

Many (if not most) people with schizoaffective disorder use medication. I simply wouldn’t have a quality of life at all without my medication and I am very pro using psychiatric medication if it helps. I will never shame someone for taking meds, no matter how much or little they take.
It’s often really hard to get the combination right. In my last hospital stay I was told that it’s not uncommon for it to take 10 years for the psychiatrist and the patient to get the right balance of meds. I’m coming up 10 years past my diagnosis so I’m hoping we have finally got it right! I’m going to go through each type of medication that a person with schizoaffective disorder might need to take and say a little about each type…

Mood stabilisers

https://www.mind.org.uk/information-support/drugs-and-treatments/lithium-and-other-mood-stabilisers/#.XaSbhIFKjnE

If your schizoaffective disorder is bipolar type like mine then likely you will need a mood stabiliser. My psychiatrist says that “Lithium is the best mood stabiliser by a country mile” I have no reason to disagree with her. The evidence is there to say that it’s the best. I’ve been on lithium for 10 years and I have never had a problem with it. Some people say it dulls their emotions but past the first couple of months this has never been a problem for me. Side effects for me are feeling thirsty a lot and peeing a lot, this is annoying but a sacrifice worth taking to stay grounded. You must get a blood test to check your lithium level every 3 months, and every 6 months you need kidneys, liver, and thyroid checked. They use smaller doses of lithium than they used to so complications are less likely. However everyone’s dose is different depending on their blood levels. I went to a talk about 10 months ago about lithium and found out that even though it is by far the most effective treatment for bipolar and bipolar type schizoaffective disorder; commonly it is not being prescribed which means some patients may be missing out on treatment that could really help them.

https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/changes-in-prescribing-for-bipolar-disorder-between-2009-and-2016-nationallevel-data-linkage-study-in-scotland/AD94F0E7B0274C639ECDA60C75B630AD

Other mood stabilisers that are often used are the drugs that are more commonly used for epilepsy. I am also on lamotrigine which I needed because even though lithium did level out my moods I was still getting unwell. There is also sodium valproate which nowadays is rarely given to women of child bearing age and carbamazepine. I’m sure there are others but those are the main ones that I know.

Quetiapine which is an antipsychotic is also frequently tried as this has mood stabilising properties and also antidepressant qualities and I believe other antipsychotics have mood stabilising properties. Also I believe that lithium is more effective in type one bipolar (which means that you get full blown mania) and not as effective in type 2 (which means you get hypomania but not mania). Another important note about lithium that I found out the hard way is that if you stop it suddenly you can get rebound mania that can be quite severe, so if you are on lithium and you want to stop then please talk to your doctor first.

Anti-Psychotics

These are probably the type of drugs that people hate the most. The side effects of these drugs are the worst! I have tried SO many until I found the right one. chlorpromazine was the one I was on for ages but the sedation was crippling me and it dulled down EVERY emotion I had plus apart from make me sleep at night (which is important when you have a bipolar type illness and why I kept taking it so long) it didn’t actually do much for my psychosis. olanzapine is another popular choice. This worked relatively well to suppress my psychosis, however it made me put on lots of weight very fast. I know not everyone who takes olanzapine will have this problem but it is very extreme and very common. It makes you so hungry you cannot resist eating, you don’t know when you are full, and your metabolism slows down! I went up from a size 16 to a size 24 in a matter of months and in the end I had to stop it. I’ve tried risperidone, amisulpride, aripiprazole, quetiapine and then finally I tried haloperidol! I really didn’t expect haloperidol to work, it was a last ditch attempt but it actually worked! When I say worked I don’t mean things are perfect but they are a LOT better. Anyone who knows me well can tell that. Now I get an injection in the bum once every 3 weeks and my psychosis only really comes back a few days before my injection is due. That is heaps better than struggling everyday.

Side effects for me are restless legs, and stiffness of my joints. I take a drug called procyclidine three times a day which basically suppresses the side effects of haloperidol. It sounds complicated but it works well.

The thing about psychosis is that everyone is different. Everyone responds to meds differently and it’s trial and error. There is only one antipsychotic that statistically works better than all the rest and that is clozapine. Had my haloperidol not worked that was the next step for me. I don’t have enough experience or time to write about clozapine in depth but I will share some links in case anyone is interested. Anyone on clozapine has to be monitored very carefully because there are serious risks but I have seen it change lives.

https://en.wikipedia.org/wiki/Clozapine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4169186/

The main problem I’ve had with antipsychotics is that they have a tendency to dull emotions down. I’m very lucky that for me haloperidol only really does this for two or three days after my injection and not extreme. For me it’s worth it. Everyone else has to decide for themselves if it’s worth it for them but if you are in the mental health system and have been under section or a community treatment order it can be decided for you. Even in 2019 forced injections do happen. I myself am on a CTO and have been told that if I refuse my injection I will be taken to hospital and given the injection against my will. That for me is a scary thought.

Antidepressants

The next kind of drug that’s given to people with schizoaffective disorder is antidepressants. It’s important to note here that psychiatrists are wary of giving anyone with a bipolar type illness an antidepressant because they can and in my case frequently do cause mania. That being said sometimes antidepressants are still prescribed.

There are several different types of antidepressants but for the sake of stopping this blog becoming an entire book! I am going to just give a brief overview and focus on my own personal experience because at the end of the day, that's what I know best.

SSRI type antidepressants are the most common. I’ve tried a few of those, mostly when I was only diagnosed with depression. I tried fluoxetine (prozac), sertraline and citalopram. These helped my depression in a very mild way. They took the edge off, they didn’t take it away and I still struggled. For me the main side effect of this drug was intolerable and that is sexual dysfunction. To put it bluntly, I was unable to have an orgasm. For some this doesn’t happen but for many it does. For other people it is a side effect they can live with and that’s ok, but for me it was not tolerable and I went to my doctor asking for an alternative. I was then prescribed amitriptyline.

Amitriptyline is an older antidepressant, it’s a tricyclic rather than the more commonly used SSRI types. The main side effects I get are constipation, some difficulty peeing (I need to totally relax) and sedation. There are other side effects that I don’t get that others do. I’ll provide a link so that people can read up for themselves…

https://www.nhs.uk/medicines/amitriptyline-for-depression/

Amitriptyline is guaranteed to raise my mood. I’ve never been on it and had no effect. It’s amazing. Even more amazing is that it gives me the best quality sleep possible. I won’t hold back, it’s my favorite drug! So what’s the problem? Why have I, up until now, still been having severe periods of depression? The answer is mania. Amitriptyline up until now has always pushed me into mania; this has made my psychiatrist very reluctant to give it to me even though when depressed, I frequently ask for it because I know that it will bring me out of depression. For me (in a depressed state) mania seems like a better alternative! What’s changed for me now is that since my hospital admission, I am now on a second mood stabiliser “lamotrigine”. Since then I have been able to tolerate a very high dose of amitriptyline without being pushed into mania (so far). It’s early days but I am feeling hopeful and so are my psychiatrists. This is what I mean about getting the combination of medication right. Everything has an effect on everything else, every person is unique so everyone will get optimal effect from different meds.

Another thing worth noting about amitriptyline is that there is a huge risk for overdosing that the person will die. This is obviously a concern when giving it to someone with such a serious mental illness. I was warned when I first got prescribed amitriptyline that it was very dangerous to overdose on. When suicidal I did overdose on it, twice. First time a smallish amount, the second time a larger amount and I very nearly died. I now only get a weeks worth in an NHS dossete box and if I am seeming low enough to be a suicide risk someone (usually Howard, my partner) will look after my medication for me and only give me a day or two at a time.

There is some evidence that amitriptyline is one of the most effective antidepressants. This does not surprise me.

https://www.ncbi.nlm.nih.gov/pubmed/11157426

Anti-anxiety medication

Most patients with schizoaffective disorder will experience anxiety at some points in their illness. I have often felt anxious, especially when depressed. I haven’t had a lot of anti-anxiety medication mainly I’ve had it when I’ve been in hospital. The most common type of medication I’ve had for anxiety are benzodiazepines. Such as diazepam, lorazepam, temazepam. All of these drugs work well for me but really people should only take them short term. Tolerance happens very quickly and they are addictive and habit forming. I have abused them in the past because I know they are going to take away my anxiety and I’ll feel relaxed and calm, so of course there is a constant urge to take more and the more you take the more you need for that same effect.

When in hospital I use these a lot and rarely when things have been bad in the community. When in hospital the last time I used a new drug (to me) called promethazine which I took in a fairly high dose (50mgs). I’m not going to say that it works as well as the benzodiazepines but it did help take the edge off when I was in hospital. It’s mainly used as an antihistamine but can also be given for insomnia and anxiety.


The other drugs I’ve known to treat anxiety are drugs like gabapentin. I have no experience of those so can’t give much of an opinion but if you are really struggling with anxiety and it’s everyday for a prolonged period they could be offered to you. Anxiety is horrible and can ruin a person's quality of life.

Being compliant with medication regime

If you know someone with any mental illness you might be aware that sometimes people are not compliant with their medication regime. This can be extremely frustrating for loved ones because it seems like the person is deliberately sabotaging their mental health. I have at times deliberately missed meds or taken too many meds. Why would someone with a serious mental illness like schizoaffective disorder do this? The answer is for several reasons.

Side effects

The side effects of some of these medications can be severe. Especially antipsychotics. Until I found haloperidol and started getting it injected I often skipped or quit my antipsychotics. Dulled down emotions are horrible, especially when you are already depressed. It can ruin the feelings of love, warmth, happiness, excitement, passion, sexual arousal… Sometimes it feels like it’s better to be psychotic and feel rather than be free of psychosis and feel nothing (or very little).

Trying to affect mood

This happens particularly with lithium. As I’ve already said if you stop lithium you have a high chance of getting rebound mania. Once I figured this out, when severely depressed it was very tempting, in fact I did, stop lithium to induce mania. It often worked but then my bloods would be taken and it be very obvious that I hadn’t been sticking to my lithium regime. My loved ones would get angry with me. Why would I do this? I’ve effectively created chaos and upset for the people around me. I feel bad for this but imagine being so severely depressed you can’t feel any emotions, you are constantly thinking about suicide, everything feels sluggish and hellish and that goes on for months and months. Now all you have to do to feel happy is to stop taking a particular pill every night and you are going to not only feel happy but feel on top of the world. Often I try and do it in a subtle way. Taken less of my dose, missing a dose here and there. In the hope that I can just induce hypomania. Usually though it’s resulted in severe mania and a stay in hospital. My admission for 6 weeks back in January was a result of this.

Missing the psychosis

Yes you read that right. It is possible to miss the psychosis. Especially if you are not depressed and your psychosis was not all negative. Hearing voices can be mixed. I often hear Howard’s voice telling me he loves me, he sings to me, he keeps me company when I’m alone. I miss that part of psychosis. If you are lonely sometimes hearing voices can be a comfort. You get used to hearing voices and you can miss them when they go away. Also sometimes you feel like they are giving you important messages or information. To cut them off feels wrong. It took me some getting used to after 10 years of hearing them every day to suddenly not have them at all (most of the time).

Being too unwell

When you are very unwell taking medication can be difficult. Voices might tell you not to take medication. You may be so depressed you just lay in bed and don’t get up. Taking your meds is the last thing on your mind. When depressed, a person might not care if they live or die. So taking medication to make you feel better seems pointless.

There are lots of reasons and I urge you not to judge. Help the person understand that the medication is important. If their side effects are unbearable help them explain this to their psychiatrist and when they and their psychiatrist are trying to figure out what medication works for them be supportive, be kind, don’t judge. Keep in mind it can take up to 10 years, with an illness as serious and complicated as schizoaffective disorder, to get the medication right. I can promise you if you had to take so much heavy medication then you would struggle too. If you feel a person is in danger then get them help. In Edinburgh you can call MHAS (Mental Health Assessment Services) which are based at the Royal Edinburgh Hospital , https://services.nhslothian.scot/MentalHealthAssessmentService/Pages/default.aspx the police are also an option, talk to the people close to them, also talk to the person. You might not get through to them depending on how ill they are but you just might. I have in the past been convinced to go to MHAS of my own accord. It can happen. Remember for people like me MHAS and places like it have often be a one way ticket to the psych hospital. Be understanding about why people might be reluctant to go.

Some people choose not to take medication and sometimes that’s okay. There are some people who can manage without it. Just because this isn’t the case for me doesn’t mean I would invalidate someone else’s choice. There is other support available that is not simply to medicate. Which leads me on to my next and last point.

Talking therapy

Ironically talking therapy is harder to get on the NHS than pills. I have had psychotherapy for three months in my recent hospital stay.

In my experience talking therapy has been good alongside medication. I don’t think it can cure schizoaffective disorder but I do think that it can help manage it especially (but not always) alongside medication. There are various things that can lead to a person developing an illness like schizoaffective disorder. It is thought to have some genetic basis however other things can bring it on such as trauma. I have had psychotherapy for sexual assault/rapes in my past. Going through therapy is extremely tough. Like me, a person might get worse before they get better. It can be rocky. I have finished therapy for now but I’m still having the effects, mainly flashbacks at night. I hope on the whole it’s helped though.

I hope this blog has been informative. Please leave comments if you have any questions. I’m very open and I will try and answer you. If you know me in person feel free to drop me a PM. I hope that this blog has been informative. Feel free to share it far and wide; if I help one person then for me it was a blog worth writing. I am willing to take suggestions for any future blogs. If it’s something I have experience of then I will happily write honestly about it.

Thank you for taking the time to read.