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A lot has happened these past several months and I feel like I need some input to make sense of all of this...
Here is all that has happened as bullet points:
October 2023:
- I'm actively suicidal and I contact the NHS Crisis Team
October 2023 to December 2023:
- I go to the psych hospital 3 times a week, seen by nurse, social worker or psychiatrist
- The psychiatrist asks if I was ever diagnosed and I tell her my whole life story and that I was diagnosed with severe depression and Borderline PD when I was a late teen
- I tell her I heard voices for a few years during that time
- During these months I start developing symptoms that I never had before:
- Moments of intense panic and terror
- Would feel like furniture/objects were smiling at me, mocking me or were straight up evil and wanted to harm me
- Would have firm beliefs that made sense to no one: believing that my computer was sucking the life out of me, that a picture turned another object evil, that my phone could read my mind
- The psychiatrist said I wasn't psychotic, that I was just having psychotic episodes (whatever that means)
- I'm prescribed 200mg of Sertraline and 3mg of Risperidone
- I experience side effects that cause sexual dysfunction, constipation, hard time crying
- I'm going through hell because of the symptoms above + suicidal ideation but they don't care about my symptoms, only whether I want to die or not
- I get discharged after 6 weeks and referred to my GP
February 2024:
- I leave my psychologist of 16 years and start therapy with a new psychologist that specialises in EMDR and deals a lot with people with psychosis
- From consultations with him, he tells me he doesn't think I have psychosis but rather that my episodes are driven by high stress
- I stop taking medication cold turkey as I feel that it's not working as it should and I don't want the side effects anymore
- At this point I don't have a psychiatrist to talk to and the GP can't change my medication
April 2024:
- The psychosis-like symptoms gradually subside and stop
- Severe depression and passive suicidal ideation remain
May 2024:
- I get magically referred to the Mental Health team (thanks to Talking Therapies service) and have my first appointment with a new psychiatrist
- I retell my whole life story and correct mistakes on the crisis teams' notes
- The psychiatrist is very concerned about my history of psychosis symptoms and tells me she thinks I have Psychotic Depression
- Wants to prescribe me other medication but I ask to read the side effects first before agreeing to which she becomes visibly annoyed, gives me some papers about the meds and the appointment ends
- I tell my psychologist about the Psychotic Depression diagnosis and he thinks it makes sense, albeit a rare condition
- On the following week I call the psychiatrist to discuss the meds a bit more in depth, as I'm on the fence on taking medication
- The psychiatrist tells me she re read all the Crisis Teams notes and no longer thinks I have Psychotic Depression but rather that I have Borderline PD, like diagnosed in Poland (I'm not from Poland)
- I accept taking the damn meds because I'm tired and just want to be left alone
- Later on that same day, she calls me again and asks me to forget medication and our whole phone chat. Tells me she will speak with a consultant and call me back the next day
- It's been a week and I haven't heard since
After all this, I don't know what's wrong with me and I feel more alone than ever. I have asked both psychiatrists, if my symptoms are not psychosis then what the hell are they and neither gave me an answer.
They also don't seem to comprehend that, yes, my life isn't bad, it's quite good actually, and I can't feel happy. I can't seem to be happy no matter how good my life is, I'm extremely sad every day, struggling to do the bare minimum. Something is not right with my brain, I even asked if they could do a brain scan but they refuse. They say they do it for people with physical symptoms or with psychosis and I don't fit into any of those categories.
What is wrong with me? Does anyone have similar symptoms? I have such little faith in these doctors, they keep letting me down, I need to feel like I'm not alone, like there's some diagnosis and treatment that makes sense.
Please tell me if you experience something similar... Help me because I don't think they will...
they aren't that oblivious or incompetent
it's a difficult situation. a lot of thing things are you describe are clearly psychosis
and that's difficult, because they can't be sure whether it's early schizophrenia or a temporarily reaction to something. It would be unusual for a schizophrenic to suddenly stop having psychotic symptoms, so they are trying to figure out why that happened
you seemed to think things had special meaning for you, that usually only happens with schizophrenia, but this doctor you had thought it was the result of stress and you've not had psychotic symptoms since then. there are certain symptoms that only happen with schizophrenia or schizoaffective disorder, like ideas of reference (like this particular thing means that I need to do the following). It never happens for any other diagnosis ever.
it's an unusual situation. the fact that you haven't had psychosis since then suggests this doctor that said it was just stress was right, but it's strange because it sounds like typical schizophrenia, but perhaps it's not
this wouldn't be an easy or obvious situation for anyone. one of the things you mentioned, not feeling pleasure in anything, could be just regular depression, or it could be ahedonia which can be a negative symptom of schizophrenia
schizophrenia has 3 parts: things that are there that shouldn't be (positive symptoms, like hearing or seeing things not there) and things that aren't there that should be (negative symptoms, like feeling pleasure and normal emotions) etc. schizophrenics also have cognitive problems at times.
did you end up trying the abilify or aripreprozol or did they tell you to stop taking it? it sounds like you are saying they told you to not take it. that would be a decent med for low grade psychosis and it has an anti-depressant effect. it also doesn't mess up your sex life that much. unless you intend to get pregnant or could get pregnant, it may be a decent option because it seems like you have had psychosis before. if are planning to get pregnant soon, don't take any psych meds and just exercise and eat vegtables
borderline people often feel intense emotions. i don't know if that's what this is. i'm not a doctor, but this isn't an easy situation.
if you feel like you are getting worse, you could advocate for yourself and ask them to just inject you with a month of abilify and see if you get better. it's awful to experiment like that, but you could. they would want you to take pills for a bit first
can you exercise and eat healthy right now? exercise does a lot of stuff.
the current mental health perspective is that you either have a disease or you don't, and they don't really tend to do much evaluating of how bad it is. People usually don't discuss low-grade schizophrenia, like someone going back and forth between schizophrenia symptoms and not, which is unusual
You could also have really low grade schizoaffective disorder. I don't get why they suddenly changed their mind on abilify for you.
I know before i've felt depressed and said "oh my life is fine" but I had also had really awful sexual trauma and I just didn't talk about it with anyone. If there's anything like that going on, any horrible experiences that you are just ignoring, and that's making you sad, that could be part of it. Perhaps that's why the EMDR has helped? Are you still doing EMDR or have you stopped?
That's a really long answer, but these people aren't necessarily stupid or incompetent, there are just multiple ambiguities in your situation.
You mentioned in another post about challenging the psychiatrist and wanting to know what was wrong instead of just throwing random meds at you. Actually, trying random meds and just seeing if they work often is a good way of doing things. In your situation, the labels matter less than the outcome, and there's no way to know what the outcome is or have a sense of the label unless you try different things.
Based on all the messages you were getting from inanimate objects, it seems like psychosis which could be treated with something like Risperidone... but you hated that... so they tried something else... working on stress and other things...
They may not have understood that Risperidone is just a terrible medication and lots of people who take it hate it. If someone absolutely needs Risperidone and can do well on it, that's great, but so many people don't like it. They may be afraid you'll react like that to Abilify. But you probably won't.
I think the smart thing would be to go back and say "Let's try the Abilify and see if I get better." Just try a low dose. It works on a lot of different neurotransmitters. Just if you start to feel better, please try to eat vegetables and exercise and do activities that involve being social and don't do things that cause brain damage, like drugs, or eating food with preservatives, or not sleeping properly, or eating foods that cause inflammation. Then, once you feel better, see if you can find something that matters to you to care about. There's so many awful things in this world, if you feel better enough, try to change one of them.
But no, they aren't idiots or not aware of what's going on. They may be busy, so it's fine to be slightly annoying and even let them know your thoughts. Abilify doesn't prevent you from having a sex life or being normal.
It also depends on how you feel. If EMDR is working, and you're getting better, it may just take longer for negative symptoms to resolve. Positive symptoms often go away before negative symptoms of psychosis. The idea that EMDR could resolve both is stunning to me, but I know little about EMDR.
I think it all depends on how bad you feel. If you are still doing EMDR and can tough it out to see if the chronic feelings of ahedonia go away, that may be better. But if you feel like you might suddenly deteriorate and could lose it, get on the Abilify. It seems like you've made a lot of progress on EMDR really quickly, perhaps those people treating you are wondering if you'll make more progress.
I don't know much about EMDR. I just read a bit and it seemed like there's mixed data on it but it does help with PTSD. The big missing piece of all of this is whether you've experienced severe trauma. If you have and you're still doing EMDR and getting better, that would be why they are holding off.
Anti-psychotics change the normal functioning of your brain slightly, which is sometimes helpful if someone's brain isn't working "well" and I put well in quotes because nature just follows physical laws and nothing is really bad or good in nature. If EMDR is working well, they may be concerned about interrupting that with anti-psychotics if they don't know how EMDR and anti-psychotics interact.
So the question becomes, how bad do you feel? If it's terrible, and you feel like you can't continue, perhaps try the Abilify and tell them how bad you feel and let them know EMDR was helpful but you want to try something. You could also try a low dose and see if you feel better or worse. Just please exercise if you can during this time if you are up to it, please. Perhaps you already do.
This isn't a clear situation, and since it's not an "easy" situation to figure out that's why you aren't getting clear answers. Doctors often won't say "well, it's hard to know" and go into a lengthy analysis because it could confuse a patient and the doctor could be wrong.
Hope it goes well, either way. If you are considering suicide, but want to get better, you should ask them about going on Abilify. You could also try a very very very low lithium amount with that. It sounds like it could be low level schizoaffective disorder depressive type, but it's impossible to know these things easily and often the labels don't matter as much. Lithium also tends to decrease feels of suicide ideation.
Your psychosis symptoms are consistent with someone with schizoprenia or schizoaffective disorder, your remission of your psychosis symptoms isn't consistent with either really. If you had low grade schizoaffective disorder or schizoprenia and the EMDR lowered your anxiety, then your positive symptoms could have gone away while negative symptoms remain. Abilify would help negative symptoms slightly.
I would not use the term "negative symptom" when you talk with them. They'll start thinking about schizophrenia and immediately conclude you have that and then want higher doses of meds or strong meds possibly. (You'll be accidentally doing somehting called "priming" if you do that which will result in them thinking about schizophrenia instead of symptom reduction.) You could just say "The EMDR helped, but I still feel bad. I heard great things about Abilify. What if I tried a low dose? I heard the side-effects are low and I'd like to try it." They would be likely to give it to you.
Then, when you are on Abilify, just start jogging or doing vigorous cardio every day. If you have mild schizophrenia and were having negative symptoms, you'd start to feel better from Abilify and cardio, but the problems would return if you stopped those things. You could try it?
Again, not a doctor and could be wrong about everything.
