"Newly" Diagnosed Schizoaffective

[Poem]

Greetings,

So, I found out recently that my diagnosis had changed from Bipolar 1 to Schizoaffective Disorder: Bipolar Type. This diagnoses switch was done 2 YEARS ago and nobody told me. Sure, my Pdoc at the time said it might be a possibility, but I was really upset that no one bothered to clue me in. Anyway. The thing is, I've been shuffled around through so many Pdocs and psychiatric nurse practitioners and I have never told them my whole story. 

My first ever Pdoc asked if I ever had any psychotic symptoms. I said that I would hear my name being called, and before I could say anything else, they laughed me off saying that everyone experiences that. So, being the shy person I am, I thought that I was being silly and never mentioned it again. My last Pdoc, I tried to be more open with and told them about some hallucinations/paranoid thoughts I had...hence change in diagnosis.

Now I am with a new provider whom I don't trust at all. They don't seem to know how to manage me at all, and every session seems to be more and more a waste of time. I am currently switching to another provider, but it will take a bit before I can go. I'm a little nervous because I've tried so many anti psychotics, and am currently not taking one. Sorry, the point is I am planning to give my therapist all the details about things that have been going on for years. Stuff I never had the guts to say, because I know they will listen to me. I am just afraid that since I never said anything to my new provider (or even in the past) my future provider might think that I am making it up since I found out about my new diagnosis. Maybe I'm overthinking things. I don't know. But the only people on my support team that I trust are my family and my therapist.

Sorry if this is a bit of a ramble. I've been in a bad state the last few days and this has been edited and re-edited for your perusal. If there is anyone out there with the same disorder, or just someone with advice, please help me! There is so little info on Schizoaffective disorder, that I would really like to hear from others, maybe hear some coping skills? Everyone is different, but I am open to anything at this moment. Falling asleep last night was hell. My mind was racing all over the place, with layers of thought over layers of thought. I have to sleep with a light now, because shadows will creep the hell out of me. I have poor memory and forget words/mis-say them. My concentration is shot. I lash out in anger and always have this simmering irritability underneath. I'm starting to get the feeling that something is watching me again.

Help!

Poem

 

[Iceberg]

I highly doubt that a pdoc will think you're intentionally misleading them when talking about psychosis... I mean it's not like ur drug seeking or anything. I've learned that it's most effective when you open up to ur pdoc and only focus on just saying all that u feel you need to say...  If you worry too much about predicting their response you are prone to alter/hold back facts which just muddies the waters and makes treatment harder. I know it can be tough to be that open but hey isn't that why we pay tons of money for them to listen

[coraline]

I went through a few psychiatrists before getting the correct diagnosis..

I held back information about symptoms I was experiencing..

I didn't really know how to explain myself..I kind of just agreed with what they would say..

I was ashamed of what was going on..due to the abusive relationship I was in at the onset of my illness..

He would dismiss my symptoms..yet act concerned..I was always left confused..

 

I am a shy person as well and it has taken a lot of bravery for me to be honest with my psychiatrist I've been seeing since..

I've been seeing her since 2011..

I now have the correct diagnosis..she is trying hard to work with me on a treatment plan with meds..

I still have a tendency to withhold information..I get scared..

But my best advice is to not do that..be honest..write lists of symptoms for your appointments..

I am currently still struggling with stability..

I keep trying different meds..different doses..she really tries her best..

 

Some ways to cope is to find activities that you enjoy..

Like exercising..

Listening to music..

Anything artistic..

Watching movies..

Deep breathing..

Writing in a journal..

Reading..

 

Those are just a few suggestions..

 

I hope that this helps..

 

[Poem]

4 hours ago, Iceberg said:

I highly doubt that a pdoc will think you're intentionally misleading them when talking about psychosis... I mean it's not like ur drug seeking or anything. I've learned that it's most effective when you open up to ur pdoc and only focus on just saying all that u feel you need to say...  If you worry too much about predicting their response you are prone to alter/hold back facts which just muddies the waters and makes treatment harder. I know it can be tough to be that open but hey isn't that why we pay tons of money for them to listen

You're right. It is not like I am seeking out meds and who would joke about psychosis! And I should say something to get the best treatment. But I just don't trust the person I'm with and am afraid of opening up. I'm only seeing a nurse practitioner and it is seriously like they won't/can't do anything. They just tell me to see my GP for things that could be side affects of my meds! They even said they can't interpret most of my lab work. But you're right, I can't jump ahead and think about their reactions. I'm just happy to be moving on to someone else.

2 hours ago, coraline said:

I went through a few psychiatrists before getting the correct diagnosis..

I held back information about symptoms I was experiencing..

I didn't really know how to explain myself..I kind of just agreed with what they would say..

I was ashamed of what was going on..due to the abusive relationship I was in at the onset of my illness..

He would dismiss my symptoms..yet act concerned..I was always left confused..

 

I am a shy person as well and it has taken a lot of bravery for me to be honest with my psychiatrist I've been seeing since..

I've been seeing her since 2011..

I now have the correct diagnosis..she is trying hard to work with me on a treatment plan with meds..

I still have a tendency to withhold information..I get scared..

But my best advice is to not do that..be honest..write lists of symptoms for your appointments..

I am currently still struggling with stability..

I keep trying different meds..different doses..she really tries her best..

 

Some ways to cope is to find activities that you enjoy..

Like exercising..

Listening to music..

Anything artistic..

Watching movies..

Deep breathing..

Writing in a journal..

Reading..

 

Those are just a few suggestions..

 

I hope that this helps..

 

Sorry about the abusive relationship. I hope you have been able to emotionally and mentally move away from that as much as possible.

I too, went through several Pdocs before I got my current diagnosis. I totally get what you mean about agreeing with them. I am also struggling with stability at the moment. Thank you for the suggestions. I have recently started writing things down for when I see anyone because I have a bad memory. Your input has made me feel better. It is not something I wish on anybody, but thank you for stepping up and sharing your experience with me. It is good to know someone out there understands.

Thank you both so much with your replies. It means the world to me right now. I wish you both the best. 

Poem

Edited February 25, 2019 by Poem

[aura]

I was diagnosed BP1 for years before my docs switched to schizoaffective disorder. I feel like it was a really important turning point for me because now my doctors are more seriously treating the psychosis with clozapine and I've seen a significant reduction in symptoms. I haven't had psychosis in maybe two months, which is a really huge accomplishment for me! I hope this new diagnosis leads to better medication management for you too.

[Poem]

@aura

Thanks for your input. I'm glad you are finding some stability!  I keep seeing clozapine come up. That is one (in a long list) I haven't tried. I'm hoping talking to someone about all this will make a serious change, too. I am going to pour my heart out today, and hopefully things will move in the right direction. Thanks for your support everyone. I'm still pretty scared about it!

Poem

[Iceberg]

Good for you! Is your med situation up for discussion? 

[Poem]

@Iceberg

Well, I talked in depth with my therapist today. They are going to get me an appointment with my current provider (even though I want nothing to do with the provider anymore.) But since I don't have any antipsychotic, like I mentioned, we both thought it would be the best option until I get to see my new Pdoc. Anyways, my therapist might end up coming to the appointment with me to help out in getting the facts across/advocacy, so I'm hoping there will be some discussion about moving forward with meds! 

In any case, all the cards are on the table now, and even though it was very anxiety producing, I feel better now that I told the whole truth rather than continuing to hide it. It is finally out there! Lol. So, now there is no excuse for providers looking the other way when it comes to getting treatment. 

Thanks for your encouragement, and for checking in on me.

Poem

Edited February 26, 2019 by Poem

[coraline]

It is very anxiety provoking to get it all out there..

Good job on doing it!!..

[Poem]

@coraline

It was so nerve wracking! But thank you for being one of the people to push me in the right direction. Knowing that you were able to push beyond your shyness, helped me to solidify my resolve (even if I felt like dying during sharing!) I seriously hope this gets the ball rolling.

Poem