Lived Experience Forum

[prodius]

Hi, I’m fairly new to this forum

Just a little background about myself. I was diagnosed with acute paranoid schizophrenia in January 2011. The hospital had put me on major psychotropic drugs . Years had gone by without any symptoms so I began to question my diagnosis. In 2016 I had abruptly stopped taking the drugs a couple of times which was not wise. Within a few weeks I went into withdrawal state. I was all over the place and ended up in hospital which is when they changed my diagnosis to schizoaffective bipolar type. So, they added a mood stabilizer to the antipsychotic. I was compliant with that for a period of time. The second time I had abruptly stopped taking psychiatric drugs in early 2017 I did some silly things made poor decisions and lost a circle of friends. I was devastated then went into a deep depression and suicide ideation and consequently ended up in hospital again. The hospital coerced me onto a community treatment order and put me on an injection of anitipsychotic and high dose of mood stabilizer. They told me at the start they cannot put me on antidepressants as it would cause mania or hypomania due to the bipolar diagnosis. However, they decided to put me on on an anti-deppresant anyway. I questioned why they put me on it when they initially told me anti-depressants would affect my mood. But they put me on it anyway. I was on it for a short period then stopped them, I had some withdraws such as dizziness that went away but continued the mood stabilizer and anitpsychotic.

I was still confused as to why I had not had any schizophrenic symptoms since January 2011. I began to research as I was baffled by all this. During early 2017 I come across a psychiatrist who criticizes the prevailing model of mainstream psychiatry. He argues and debates that psychiatry is a pseudo-science that they simply claim mental disorder is a brain disorder with an absence of any convincing evidence or proof. I got a referral by my doctor and made an appointment with him for a second opinion. After an hour of assessing me he was very direct and told me I do not have schizophrenia I do not have bipolar or depression. He told me the consequences of stopping the drugs abruptly but I had already knew that. I decided to come off the drugs very slowly under his supervision. The first being the mood stabilizer. He said it is an anticonvulsant that has no specific effect on mood, he said through emailing not to be bothered by what the hospitals told me as it is “rubbish” which is opinion only not established fact. So, I weaned off slowly over a period of 4 months. That was nearly a year ago and have found him to be correct on that.

I am now weaning off the antipsychotic slowly. I went to a compounding chemist. The hospitals and previous psychiatrists had me way above the recommended dose. Now well below the minimum dose I am doing fine but still have a while to go. When I told my psychiatrist the doses they had me on for years he given an eye roll.

Given that they have been incorrect and inconsistent on a number of treatments. And that the tapering off of the antipsychotic is going well at present. How can I be expected to trust and believe what mainstream doctors have presented to me as certain fact?

I am seeking clarity.. and to see if anyone else has a similar story?

[Victor]

Hi prodius,

Victor here; I'm one of the moderators.

Sorry to hear you've had such a long battle to get where you are now, but it is wonderful news to hear you're making steady progress. It's also refreshing to hear that there are some psychiatrists out there pushing the envelope and working hard to do what is right for the patient.

It would certianly be great if there were other people out there who have had a similar experience to you that could contribute to this facinating topic. 

Cheers,

Victor. 

[comingup18]

Hang in there my friend and hopefully things will continue

to get better for you.  I know it can be hard to trust sometimes

but we must continue to try to trust in the process of our

Dr's knowing what is best for us.  However, sometimes you

just got to follow your gut feelings because after all it is your life.

Be blessed my friend

[Lilyq]

Sounds interesting, I hope you are able to come off the antipsychotics OK. Are you confident with the new Psychiatrists diagnosis? 

[prodius]

Hi, thank you for your replies and support.

I am confident in my psychiatrists replacement diagnosis being anxiety. He mentioned about putting a note on my hospital file of replacing the existing schizoaffective diagnosis with anxiety. I am taking a beta-blocker when required which is working well. I’ve been seeing him for over a year now and happy with the treatment and results. The key being very slow withdrawal through a compounding chemist. I have researched his work among others to be sure I am making a wise decision. 

Mainstream Psychiatry has a history of getting things wrong. I believe it is good to question doctors and treatment. 

[eudemonism]

@prodius hi

I find the mainstream system to be very frustrating. I find that there is a blatant and general lack of care and open mindedness to a full and proper recovery for the patient. I find it has a lot of generalisation which may be due to mainstream training tactics. Also, I find that there is not enough treatment of the individual and their full potential and capabilities in good conditions.

I've had a terrible experience with the mainstream system. If I wasn't mental Ill before entering the mainstream system - I sure was afterwards... years of going to and from professionals in an attempt to get a definitive answer and result for myself. Has literally driven me around the bend. It's very - this book says you have a problem. And this book tells us what the answer is. very demoralizing I must say.

I feel that caught up in and trapped into the mainstream system and that reliant on people from the mainstream system. And that caught up in feuds with people in the mainstream system. I seriously feel hopeless of there ever being proper treatment and recovery available.

I've been put on the dsp as a result of my schizophrenia diagnosis. Given mental health housing as a result. And been taking the depot injection for about 5-6 years as a result. It feels like a trap.

And in all honesty. I think they got it wrong.

I'm booked into see a private psychiatrist soon. And I'm really hoping I can be weaned off the depot injection and onto morning and evening oral meds. Maybe anti depressants or anti anxiety for morning. And sedatives or anti psychotics for evening. With the future prospect of weaning myself off of them also. It will depend on what my new doctor says. I accept situation may never change. But I ain't going down with out trying.

I tell you right now. I feel like they completely and totally and wrongly gave me a wallop over the head with this supposed legal binding document called the mental health act. I totally feel they broke every rule in the book.

Eude

[utopia]

@prodius - I admire your courage and patience in questioning your diagnosis, finding a psychiatrist who will work with you (not at you), and by the slow safe withdrawal off these medications. 

We all have our own diagnosis and treatment plan, but it seems that many psychiatrists believe the one medication fixes all (even if they have to increase that medication to dangerous doses). 

[Appleblossom]

I am one who questions axioms of psychiatry and have seen a variety of outcomes, some good and some not so. 

What is presented in hospitals is very different to what is available re research.  The needs seem to be increasing, so I dont want to discount totally the pressures that hospital docs face.

However if you can take your own mental health seriously and make good choices over a sustained period of time, the outcomes are usually better.  Any insight is helpful.

Being able to create a trusting relationship takes time.  I tried to choose a pdoc based on his values but he was going to charge me through the roof, and did not understand my circumstances just wanted to be on the net as a progressive psychiatrist. My current doctor does ECT which would usually be a turn off, but he has not suggested it for me and has walked the path with me for over a year. It seems to be working.  He understands my desire to keep meds at lowest level possible.

@prodius Your approach seems sound to me.  

[eudemonism]

@prodius

I don't think you can trust what the mainstream system says. Because they are coming from the prospective of a system that I consider to be broken, fractured and irreparable. I believe that they are that far from the truth it is quite simple beyond a joke.

I've been messed around bye professionals of the mainstream system for about twelve years now. And it's been the most painfully excruciating experience of my life.

I consider them and the system is be in a state of complete and total denial. Where they see themselves as having done no wrong, needing to be responsible for nothing and not allowing themselves to be held accountable for anything.

Eude

[Lauz]

Hi everyone,

It is great to see you all sharing and supporting each other as you go through the sometimes difficult journey of help seeking.

I know it can be frustrating at times and we can feel quite impacted by the system itself. 

It is important when posting to stay respectful of the knowledge that everyone will have very different experiences of connecting with therapists and going through the mainstream system. Everyone will have different desires from their recovery and the type of support they seek - as a community here everyone will be at different paths of their journey so we still need to keep in mind the need to encourage that help seeking. 

It is wonderful that there is such an awareness amoungst you all of what works for you and what may not. Pushing through challenging or unhelpful experiences to find a trusting support is so valuable!