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

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