How do you cope with hallucinations after years of normality?

[PurpleLovecats]

If you hallucinate and hear voices, but had many, many years prior to that of “normality”, how do you cope with this new life?

Im finding it so distressing. I sleep random times, just whenever I can to try to get a break. I’m often up all night or asleep for a few hours in the day. I can’t leave the house. They took my driving licence off me. I cannot work. I cannot concentrate properly on the tv or radio. I’m super depressed so constantly plotting my death. I spend multiple hours believing I’m not actually alive as this all just seems so horrendous and unlikely. I cannot keep on top of the house or chores.

I was a competent mother of 4 (now grown up). I had jobs in safeguarding. I socialised and was independent and in control. I feel like a shadow.

Anti-psychotics and a lot of them.

Have you had investigations to rule out physical causes? (Brain tumour for example)

Hi @PurpleLovecats
sorry to hear you’re going through this. Do you have a mental health team? If you do, your key worker should be helping you develop coping strategies to help deal with difficult experiences. And as @NullaEffugium said, medication will usually be really helpful in these situations- do you have any prescribed and are you taking it? If it’s not helping let your care team know, there are other options which may work better for you!

If you work with your doctors and go with their medication and therapy suggestions then there is a really good chance you can have your old life back.

I started hearing voices and having hallucinations quite suddenly in my mid twenties. After a couple of years meds and some therapy I recovered and I've been both med free and hallucination free for over 9 years.

If your current treatment isn't working then let them know as there are many combinations to try and it takes some trial and error to figure out the best combination for you. I tried three meds before finding what worked for me.

Not true. I was under the CMHT for a few years. I had a very good psychiatrist who listened to me and agreed that what I was experiencing was not normal. I was sectioned a few times and diagnosed with psychosis a few times. Then I had to move teams. The new psychiatrist stopped my medication and changed my diagnosis to personality disorder. The voices returned. I became very unwell. I requested evidence of the assessment that led to the new diagnosis. I have never received this. I had a second opinion in which the psych stated he did not believe I reached a threshold for PD. The MH team suggested therapy for childhood trauma. I have no childhood trauma, I had an amazing childhood. I then requested discharge back to the GP. The GP said I was too unwell and re referred me. I then met with the team who referred me for a care assessment. I was not offered any psychiatrist appointment. I then restarted my antipsychotics as I was desperate. I became very well again. I was able to leave the house and the voices and hallucinations stopped. I asked the team if they would meet me and was refused. I had the care assessment which identified no needs as obviously I was well and capable of looking after myself. I was then discharged and they stated they did not want me to become dependent on them. Ran out of meds. Came back off. Voices etc all returned. GP says they can’t help, I need a psychiatrist as I’m too unwell for them so re referred me once more. They referred me to talking therapies who rejected me saying I’m too unwell for them and need a psychiatrist. I was offered support from a local MH support group who also closed my case saying I’m too unwell and contacted the GP to raise their concerns.
we have managed to scrape money for a private online psych appointment on sat. But can only afford one.
So my question really is, as I’m no longer allowed medication, how do you cope with these things? I feel like a shadow. I can’t cope with the voices telling me to go out and harm people. I have lost trust in everyone. I basically stay in bed as I feel safe there. The voices talk through the tv, through headphones. I see angels who hang in the corners of rooms warning me that everyone is evil. It’s just horrendous.

Thanks, they do work for me but my last psych took me off them. Dies anything else work?

No I haven’t, that’s a good point.

No I am not under the MH team. I’ve got a private psych appointment this weekend though.

What therapy did you have please?

I don’t get that impression from OPs previous posts at all.

OP: good luck with the private psych appointment, I really hope they can help you 💐

High priority

Email your MP and PALs.

My last comment was based on the fact that several people had suggested in your previous threads that you get a private psychiatric review. I am so pleased to hear that you are doing that and I really hope that it is helpful and they can write to your GP to ask them to prescribe the medication which was helping you.

Why on earth would they deny you antipsychotics if they were working for you? Makes no sense

They said that as they changed my diagnosis to PD that antipsychotics are not the recommended treatment plan.

I just thought I would update after a private psych appointment.

NO evidence of personality disorder and she was baffled by the diagnosis. She had read all my notes thoroughly and asked loads of questions and I felt properly listened to.
Long story short, she wants me back on antipsychotics. Hoping the GP will agree as she said then I won’t need to keep paying private so we will see what they say next week.

Feel totally validated to have disputed the diagnosis as I felt it was wrong and so did all my family. Also feel so sorry for people with the diagnosis as I have now experienced how professionals treat you and it was truly horrendous and made me incredibly suicidal.

Actually have a little hope this afternoon!

That's wonderful news! Hopefully the meds start working soon and you start feeling more yourself again.

I hope you get your medication soon.

When you do please make a formal complaint via pals and your MP. I had to involve mine to get a response from my mental health team. Suddenly when I had made a complains and involved my MP they were very keen to resolve the issue …

Yes, the failure in care is terrible. So glad the OP had a good experience with the private psych. The others need to be pulled up.

Thank you. It is interesting that I felt fundamentally I had been misdiagnosed and requested endlessly for information as to how the diagnosis was reached. If you had a physical illness and asked for evidence, I suspect that would be forthcoming but with MH, it was very much pushed away.
I also feel desperately sorry for those with personality disorders as I have now witnessed first hand how services treat you and it is absolutely appalling. If I reached out for support, I was told I was attention seeking. I was even labelled a fantasist in one report (they did not believe I see and hear things).
Even on here, I was accused of having a vendetta against the nhs and refusing to accept a diagnosis that mumsnet users decided must be right! It is like I lost all agency and the fact I had MH issues meant i should roll over and accept a diagnosis that I thoroughly investigated and could not see how it applied to me.
I’ve been sent home from A and E with no ongoing support. Discharged from the CMHT as they didn’t want me to become dependent on them. Refused talking therapies as I was too unwell. Refused crisis team input as I was under the gp.
Anyway. I now have to wait and see if the gp accepts the private psych recommendations. But I do finally feel listened to and that means a lot.