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dreamer80
Casual Contributor

advice for newly diagnosed schizoaffective in need of help

Hi everyone 😊 im hoping that anyone with a lived experience of schizophrenia or schizoaffective can offer advice on their recovery and journey. Im 34 and been an inpatient on n off now for the last year and half, only recently my psychiatrist said he is leaning towards schizophrenia or schizoaffective as a diagnosis finally. He said its taken so long to determine due to many symptoms from various illnesses and that it had been a pretty bad psychosis and long lasting, have been on several antipsychotics and antidepressants until eventually end up having to go on a monthly depot of antipsychotic which seemed to be working well for me and many people commented on that its the best they have seen me in years.
Problem now is it had to be reduced to due to rapid weight gain and high prolactin levels, i saw my psych a few days ago and he said he is concerned im having a mother psychosis maybe because he had reduced the dosage, so now he wants to put me on a new depot called ability at a higher dose. Im meant to be starting placement for a course im nearly finished next week and am scared shitless of what side effects i might get or if i don't go on new meds at higher dose will i wind up back in the ward?
It just feels like i get to a certain point of becoming as "normal" as i can then bang something happens and i go backwards again into my own world of confusion and it feels like im never going to b able to hold a job or function as a person is expected too in the community. I hate dealing with people hide away in my room sleeping for days on end, or searching for answers to questions unknown. We r about to lose everything due to financial hardship cos i haven't been able to go back to work and don't eat somedays due to lack of money, i constantly feel this sickness and awful feeling inside me that i cant escape and often want to die and obsess over it so much about how it will feel but i don't want to do that to my mum but sometimes the urge is so strong i worry that i may actually succeed one day and it breaks my heart that i could do that to my mum. Please help anyone who has gone thru this im lost and confused and don't know who else to talk to about things without being put back in the ward
4 REPLIES 4

Re: advice for newly diagnosed schizoaffective in need of help

Dear @dreamer80 

Welcome to the forums! Thanks for your very honest and courageous post. It sounds like you have had a really hellish time, and when you've been on that kind of emotional roller-coaster the thought of going again is terrifying. Reaching out to others is so important in managing our mental health, especially when we feel we are becoming unwell. So well done!

I think our friend @kenny66 might be best placed to help you with some understanding and advice from his experience as he has a schizoaffective diagnosis. Kenny any thoughts or encouragement you can share with Dreamer? 

In the meantime you may want to look at this thread by Kenny about how he manages his schizoaffective disorder.

Hope for a journey of healing endures...

Kindest regards, 

Kristin

Re: ahrenia dvice for newly diagnosed schizoaffective in need of help

Hi @dreamer80 

First thing to know about schizoaffective is that you can live with it and manage it OK.

Schizoaffective is always a difficult diagnosis to arrive at because of the often conflicting symptoms. I  was first treated for bipolar then schizophrenia.

As I got sicker it was obvious there was something else at play and after many many months the psych arrived at schizoaffective Disorder Bipolar Type. Initially the diagnosis was hard to take as was the treatment.

I was on the best drug ever, one which is very effective for treatment resistant schizoaffective patients. I did really well on it. The big downside was the two weekly blood tests with it to monitor side effects.

I was on it for a year but developed bad side effects.

So I tried different antipsychotics until I got onto the ones I take now with the mood stabilisers. So I take two antipsychotics and two mood stabilisers, no antidepressants because I found they effected the other medication.

All antipsychotics (and most medication for that matter) have side effects but most are manageable. The weight gain is a feature of antipsychotics from the metabolic changes but some are much worse than others for this.

I experimented with my psych with a lot of them until I got a combination right for me, which is what you should do as well, with your psych.

The management of the medication is tricky. Correct dosage is critical to reduce or eliminate extra pyramidal symptoms like the tardive diskinesia. BUT it can be done effectively.

There are two antipsychotics that I can think of straight up that cause no weight gain.

Also if you are on the atypical antipsychotics as opposed to the typical antipsychotics, side effects are reduced significantly.

I did try the depot system as I was non compliant for a while with oral medication but its not compatible with my treatment regime. It gives great consistency and good dose management though.

I did find that dose reduction to reduce side effects (like weight gain and restlessness) did not work for me because the medication only works for me at relatively high levels.

However I know people with  schizophrenia and schizoaffective who are very stable on low doses.

The treatment of both schizophrenia and shizoaffective are well known and effectively managed by competent psychs, and there is a very big reservoir of knowledge available to ensure you are treated to a high level.

In my case the fear of dealing with an MI which has particularly unpleasant and prejudicial stigma attached to it was at the time insurmountable.

But as I was coaxed gently into the supportive structure available to those with a serious MI, I felt empowered to confront those fears and deal with them.

I have had lots of admissions and ups and downs but in the end I attained a state of wellness that I can live with.

Nothing is easy about schizoaffective, but difficulties brought about by it can be minimised..

Enable your medical team to support you as I did.

The practical constraints brought about by this MI on work, family etc are in essence also side effects.

I don't have a family but peer support has been crucial.

I had to overcome a crippling feeling that I was a burden to everyone but in reality people are amazing in their ability to understand and empathise.

If your psych gets your treatment schedule right for you, you will notice obvious improvement over time.

I occassionally get the Lions Club to help out with food for me because I am such a shocker at eating properly. They are happy to do it, but maybe that is a feature of living in a small rural town.

There are government avenues that can help with income support such as the low income health care card. There are a lot of services out there and you might want to check them out.

I am never hesitant to seek help from any support services in any area if I need it.

When I was doing my uni course I got a great deal of support from the Uni counselling services and  course guides to help me through the study.

The antipsychotics can dull your mind a bit but study assistance overcomes that.

The higher education institutions today are all very adept at managing students with damaged cognitive ability and many other conditions which in the past would have proved fatal to effective study.

I got so much support,from the uni crowd, that I was able to carry on even though I was in the mental health ward on and off.

So in summing up, schizoaffective is difficult but not impossible to live with.

Psychosis is really a fact of life with schizoaffective and other MI but can be treated effectively with the right antipsychotic strategies tied in with a broad mangement approach.

I accept admissions good naturedly as they can help when I am in trouble.

All in all I live ok with schizoaffective once I understood the things that reduce its negative effects on my life.

 

Kenny

 

 

 

 

 

Re: advice for newly diagnosed schizoaffective in need of help

Thank you Kristin and Kenny for sharing your thoughts and experiences its helpful to hear other peoples experiences with MI and coping strategies. I have found when i am unwell that i somehow wind up in a dark, scary lonely place and try to shut everyone out, but i need to start talking about things with others to try and find helpful strategies to help keep me out of that dark place as in so frightened of slipping back into it again. I honestly do try my best to be like the person i used to be but i find it hard to remember exactly who i was or should be when i was well. I find alot of days i struggle to even get out of bed and avoid doing most necessary everyday tasks which results in my life spiralling out of control pretty quickly, getting stressed out then my MH suffers as a result as it seems stress is a big trigger for psychosis for me . It seems like i get to a certain point of recovery and apparent "normality" then for some reason my mind flips out not wanting to know about or deal with reality or normal everyday life so i end up going back to my world of confusion. Its not that i want to be like this and its hard to try and explain it to people who have never been there themselves. I try to avoid conversations and meeting new people for fear that ill start raving on about something that's real to me but apparently a delusion to others. Its reassuring thank you Kenny that there is hope to be able to live a meaningful life and successful management of this MI is possible. I just need to find a way to get over this barrier i seem to keep running into so i can try and start putting the pieces back together again and try to rebuild sone kind of a normal life where i can work again pay my debts and contribute again as a wife, daughter, sister , Aunty and member of the community. Once i can get to a place of stability I want to use my experience with MI to be there for others and help them through as much as I can, I am thankful for the support I have received from our MH team, my very patient psychiatrist, my PHams Mentor and other organisations who have stepped in along the way, as well as kind people like yourselves. Without them i know for sure i wouldn't be here today still fighting. It is so important for MH awareness to be recognised by everyone and that it is a problem affecting so much of our lives in one way or another. I truly want to be able to beat this and come out the other side a better person for it, i just am so scared that my thoughts may win before i get there and hate the thought of what it might do to my family if i let those thoughts decide my fate, that's why ive been able to get help in the past when i am scared of what my thoughts might make me do as they can be so controlling, i know to get help for my family's sake but in so worried this time about talking to anyone about it in case they put me back in the ward again it will be like going back to square one again and will feel like a failure. Its like im just hanging on the edge by my last few fingers waiting fir someone to either grab my hand and pull me up to safety or someone to slowly lift my fingers grip until i let go and fall to a place of no return as i don't have much fight left in me to crawl back to the edge again....... Not sure if that makes sense, sorry of its confusing...

Re: advice for newly diagnosed schizoaffective in need of help

Hey @dreamer80,
Thank you for sharing your journey..you've come a long way in your recovery, it is a real bugger when our mental health is episodic in nature...many of us can relate to the slide into not being able to manage the ordinary every day things..
Maybe you don't need to go into hospital, I would love to know that when you have experienced this before, what has really helped you?
And just for the record, I think anyone who seeks help anywhere is brave..it is not going back to square one, it is getting support when you need it..Just wondering if there are other supports you can think of..welcome aboard the forum for people who get it! Please keep posting..we're listening...
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