Husband sensitive to all medications, 3 years in to psychosis treatment, nothing works

[Isthisitnow55]

Has anyone else been through similar? We are both starting to struggle with the reality that my husband may never get better.
Short background, made it to 40 years old, no issues, very senior level job, married , kids , then one day he started with depression and over a period of 9 months became a shell of himself, lost his job, never left the house or even his bed, stopped eating , stopped washing , then developed some psychosis symptoms. Was never bad enough to be sectioned.
Early intervention team involved straight away and they have been wonderful. They see him every week.
Over the past 3 years he has been put on and off multiple antipsychotics, and he gets terrible side effects to them all.
We are at the point now where he has tried everything and we don't know what to do next as he can't come off them as the psychosis returns straight away .
Is this our life now?. We were assured all along that this was treatable and he would get his life back
He is in a much stronger place mentally but now has to deal with awful side effects. He has just had a dosage increase and has now slept for 3 days straight, he is like a zombie and the dosage isn't that high.
He can't drive or go out by himself, can't be in charge of the kids himself , can't really be left alone as he is so groggy all the time . He's also been left with muscle problems from the previous antipsychotic.
Where do we go from here?

Gosh how awful for him and you. Just a thought, have they checked his hormone levels. I’m sure they have done various blood test however, perhaps his testosterone has plummeted? Perhaps a referral to endocrinologist who specialises in MH .
not sure if there is such a thing but a consultant who specialises is hormones .
The reason I’m thinking this is due to woman whom have severe MH due to peri menopause/menopause . I have read articles of woman who have gone through the similar MH, in and out of treatments/ long stay inpatients and various MH medications and like your DH just got worst. Until HRT become available for them.
wishing you well and sending hugs .

My DM has similar problems. She has DID and has been sectioned many times. She has never found an antipsychotic that suited her, but to be fair they are very brutal drugs. I’m sure no patient is side-effect free on them, but they need to be tolerable.

She only takes them when she’s having an episode, and comes off them in between. It’s extremely difficult but one positive is that as she got older (she’s in her 70s now) for about the past 20 years she has learned to manage the psychosis much better. She often has enough of a grasp to understand that she’s hearing voices, but that they are just voices and she pretty much ignores them. Occasionally she does lose all sense of reality and can’t ignore them, but it’s very rare. She’s learned at what point she needs to go back on the meds.

On top of that it’s important to make sure his lifestyle is as healthy and low-stress as possible. Avoid alcohol/drugs (even over the counter or prescription drugs can affect brain chemistry).

What does his psychiatrist say? They’re often very dismissive of side effects, but sometimes you get a good one.

I’m a MH nurse. How much insight does he have into his psychosis? The aim is to have him on the lowest medication dose possible on which he retains awareness of reality and the ability to function. Sometimes therapy can help with this, especially if it’s psychosis due to a mood disorder. Additionally, when you say he has tried “everything”, i presume you mean antipsychotics? Has he tried clozapine? Consultants can be reluctant to prescribe due to potentially immune side effects but it’s often well tolerated from a sedation perspective. Mood stabilisers can also sometimes work for mood related psychosis and so also might be worth discussing.

Have all other causes been ruled out? Metabolic, hormonal, brain conditions etc? Did the psychosis start after he was medicated? Has an iatrogenic cause been ruled out? Has he had a therapeutic offer? CBT to help with symptoms but also psychotherapy to address the triggers?

Finally has he tried clozapine? It’s expensive so often the last offer and does mean regular blood tests but might be worth asking about.

I’m so sorry for your experience - it must feel devastating for both of you.

He's just been put on lurasidone, tried quetiapine, ariprizpole and many others. He takes these along side a high dose of anti depressant which he has also had to change many times.
He's had a brain scan and has 3 monthly blood tests and heart tests etc. They keep a close eye on him.

His psychosis is related to low mood and is triggered by low mood. He has very good insight. He didn't at his worst but does now and we are all hyer aware of the signs to look out for etc
I feel like I want to suggest him coming off for a while, just having the anti depressant and then take as needed . I don't know what to do for the best.
He's lost his whole life to this

How long has he been on the lurasidone? If it’s fairly recent, I would wait and see how he tolerates it. Initial dose increases can often cause sedation that wears off. Regarding other medication, has he tried a mood stabiliser like lamotrigine or sodium valproate? Lithium might also be worth a try, although that has its own issues. Not everyone tolerates antipsychotics well.

Has ECT been considered? It can be very effective for psychotic depression.

There are many misconceptions about due to the way it has been portrayed in various films, but I've seen it be administered and it is nothing like One Flew Over The Cuckoos Nest etc.

Hi, I'm really sorry you're going through this. Has there been any discussions around ECT? I had a relative with severe depression that didn't respond to medication, it can really change someone's life. Depending where you are in the country, there's likely an NHS clinic nearby and they'll treat outpatients so he won't need to be admitted

I was coming on to say this. My Mum has been on clorozipine or coming up to 20 years now. She ended up with drug resistant psychosis and didn’t feel able to leave the hospital at all. Nothing worked. She had to wait a couple of months for this drug to be licensed and when it was she’s been the best she’s been in 40 odd years ever since. She first got ill in her 40s too. She has a monthly blood test and has had no issues at all with taking the drug. It doesn’t banish the psychosis but appears to make it totally possible for her to manage them - is how it comes across. She has a wonderful life and we have a wonderful life with her. All the very, very best.

I was also wondering if ECT had been considered . I developed psychotic depression, ended up sectioned for 6 or 7 months and feel like ECT has saved my life - it wasn't brutal at all and it did get me well.

Hi, I came onto this thread to ask if he'd tried lurasidone and saw that he's just started it. I cycled through many meds with various side effects for years before going on lurasidone last year and it has completely changed my life. It's honestly like the lights have come on again in my mind. I sincerely hope this happens for your husband- I know the despair of constantly feeling like it's one drug after another, but only one has to work.

I have my entire life (and more) back now, something me and my other half stopped believing was possible. I wish the same for your DH.

Oh, and I was exhausted beyond belief for the first 6-8 weeks. I pushed through and my body got used to it. I take it as late as possible in the day with my dinner (around 7pm) and I'm on 74mg now.

If it’s depressive psychosis then ECT is in fact the best treatment and a lot less side effects than medication. Lithium also brilliant for severe affective disorder even if not bipolar. I slightly wonder to myself
sometimes if FEP teams are not as good at affective psychosis as they are at non affective (or schizophrenia)

Lots of votes for ECT on this thread which is heartening. Over 80% effective for severe psychotic depression. I would recommend ECT, a tricyclic antidepressant and lithium from my professional experience.

He could also ask to be referred for a 2nd opinion. There are tertiary mood disorder clinics in some areas notably London, Oxford and Newcastle.

I don’t have psychosis but I do have bipolar disorder and when in a manic phase, I hallucinate and hear voices.
I take lamotrigine daily and promazine when the mania hits. Barely any mh support worker/therapist has heard of it! It’s primarily used in dementia patients afaik.
It makes a huge difference in levelling me out. I have no real side effects anymore. I was very lethargic and sleepy when I first started taking it but not anymore.

I had treatment resistant depression and psychosis after having my daughter. I'm bipolar so was already on quetiapine this went up to quite high dose but didn't helped. Tried multiple antidepressants but didn't help.
The game changer for me was lithium. I need quite high levels around 0.9 - normal blood levels for lithium between 0.4-1.0.

I also thought I'd chip in about ECT. I had a bout of what's thought was psychotic depression. I took sertraline and olanzapine for a while - it was the olanzapine that seemed to do the trick, but I put on weight. Afterwards, I bought a book called Psychotic Depression by Conrad A Swartz. I remember it saying that ECT was his preferred effective method for psychotic depression which is treatment-resistant, so I would say something definitely worth exploring in your case. I think his thinking was that despite some dated views, the risks of ECT are minimal, and less risk than antipsychotics or ongoing psychosis. Good luck.

I was going to suggest clozapine as well. It tends to be a last choice drugs because of the effects on the white blood cells but is very closely monitored as a result. However it can be very effective in treating symptoms.

I see ECT has been mentioned for his depression. This isn’t used much these days but can also be very effective and can work quickly so is useful in those whose mood is entrenched and are at risk of severe self neglect and/or suicide.