Anyone here with schizophrenia?

rish

I am aware of a diagnosis called schizoaffective, and the docs go between telling me I have that and / or a mood disorder. I am uncertain what I really have  and there is no clarity on what I’m being told.

If you have schizophrenia, are your symptoms chronic even with meds? I seem to be fine with meds, and my moods cause me the most issues. My first episode of psychosis was in 2010, and later in 2020 (but this was because the docs took me off meds and onto an antidepressant called Sertraline).

Ross_Alumni

Hello @rish and thank you for making this post.

Sorry to hear that you aren't getting much clarity about your situation, it can't be easy. Have you expressed to your medical team that you are finding it hard not being clear about what it is that you have? Perhaps they would come to understand how it is making you feel and would be able to provide further clarity. 

It's good that you are fine with meds, and I hope that aside from the lack of clarity your medical team is providing you with all the support you need to manage your mental health. Do ensure that you keep in contact with them and let them know if you ever feel as though you need more or different support  

rish

Unfortunately because I rarely see the same consultant, it is difficult to get a diagnosis. Still, at least there is someone from there who calls me every few weeks to check up on me these days. I will try to ask for a doctor who will be able to see me on a more regular  basis though. Thank you for your response @Ross_Scope

L_Volunteer

You are welcome @rish. Our responses are the very least you deserve,

It sounds tough that you rarely see the same consultant. It seems like you feel this is a barrier to getting a diagnosis too. 

It sounds really positive, and supportive, that you at least have someone from there who calls you every few weeks to check up on you these days.

Hopefully, you will be able to see a doctor who will be able to see you on a more regular basis. If we can do anything else to support you, please don't hesitate to let us know 

rish

Thank you @L_Volunteer

L_Volunteer

You are welcome @rish. It is the very least you deserve. If we can do anything else to support you, please don't hesitate to let us know. We are all here for you 

HKW08

Hi Rish, I don’t know how old this conversation is but here’s hoping you’ll see it! 

Schizoaffective disorder is what im
being looked at for now, I was originally diagnosed bipolar a number of years ago, but have had persistent psychotic episodes which have had some effect with medication but not as much as they were hoping, I’ve also been tried on many medications and finally been settled on olanzapine but with the last episode I had the MH team now heavily intervened because of its intensity and the fact I’m on the highest dose of olanzapine and are now talking of changing medication again to suit schizophrenia rather than bipolar as they now think I’m in between but presenting more on the schizophrenia side. However, I’ve been fortunate to have one set care coordinator (although that’s now due to change in October to a new one!) and have seen the same two psychiatrists throughout. 

So to answer your question, even on medication I have visual and/or audio hallucinations, severe paranoia where I think someone is watching me all the time, bad anxiety which comes from that too. It has left me unable to leave the house for sometimes weeks or months when the episodes are bad.

I also get the moods but not so often I have found this is more controlled by my medication. 

Are you on a mood stabiliser?  

Tori_Scope

Thank you for sharing that with us @HKW08 I hope that @rish sees your comment, and can benefit from your insight!

It sounds as though things have been quite tough for you, but that you're on the right path to being able to manage your symptoms. I hope that the transfer over to the new care coordinator goes well. How are you feeling about it?

HKW08

I’m a little worried about the transition to a new care coordinator as the one I have now is fantastic! And I find it hard adjusting to new people so it’ll take some time, but hopefully they will be just as good as the one I have now. 

L_Volunteer

I can hear how you are feeling worried about the transition to a new care coordinator @HKW08. Would anything, in particular, make this feel more manageable for you at the moment?

Wishing you the best of luck! Please don't hesitate to let us know if we can do anything to support you 

rish

HKW08 said:

Hi Rish, I don’t know how old this conversation is but here’s hoping you’ll see it! 

Schizoaffective disorder is what im
being looked at for now, I was originally diagnosed bipolar a number of years ago, but have had persistent psychotic episodes which have had some effect with medication but not as much as they were hoping, I’ve also been tried on many medications and finally been settled on olanzapine but with the last episode I had the MH team now heavily intervened because of its intensity and the fact I’m on the highest dose of olanzapine and are now talking of changing medication again to suit schizophrenia rather than bipolar as they now think I’m in between but presenting more on the schizophrenia side. However, I’ve been fortunate to have one set care coordinator (although that’s now due to change in October to a new one!) and have seen the same two psychiatrists throughout. 

So to answer your question, even on medication I have visual and/or audio hallucinations, severe paranoia where I think someone is watching me all the time, bad anxiety which comes from that too. It has left me unable to leave the house for sometimes weeks or months when the episodes are bad.

I also get the moods but not so often I have found this is more controlled by my medication. 

Are you on a mood stabiliser?  

Firstly, sorry for the late response to your post. I do not currently take a mood stabaliser but I would like to give it a try if the consultant recommends one to me. I wish you all the best with your new care co-ordinator. Unfortunately I do not ever see the same psychiatrist more than once which is a shame. I don't understand why they keep leaving. Because of this I am left without an accurate diagnosis.

L_Volunteer

That sounds really frustrating @rish! If we can do anything to help please don't hesitate to let us know