Doctors considering Schizophrenia diagnosis. I'm surprised. Questions

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Hello, I’m new here. I’ve been seeing a psychiatrist for over a year now (which is usually every few months). I have been diagnosed with Bipolar since 6 years ago. Also, GAD and OCD.
My psychiatrist seems to be very competent and skilled, he has been asking some questions in the past 6 - 8 months that have had me googling (I know googling is not ideal). It’s been like he knows what’s going on with me but wouldn’t say. I started googling my symptoms, and googling about the questions that he asks me that are ‘bang on’… and Schizophrenia came up a lot. I’d think… 'wow, its like I have that… but also I know I don’t because a lot doesn’t match up ‘… so I looked to see what other conditions seem to match and none of them fit as well… but I felt that… ‘schizophrenia would absolutely be way more obvious if I had it’ so I obviously don’t’. I feel like after reading information, my symptoms would be ‘mild’. My psychiatrist would sometimes say ‘that’s not bipolar’ when I would describe my symptoms.

So anyhow he recently sent me to a well known psychiatrist - with a neurological focus for a 2nd opinion (possibly to confirm his suspicions). When I met with him for 1 1/2 hours (and he met my husband for 30 mins), he told me that I am not bipolar, and to rule out temporal lobe epilepsy with EEG’s (as he is confused about why seizure meds have been effective for me). He said, however I do not think that realistically we are looking at that. This presents like schizophrenia to me, considering the psychotic experiences etc… I thought what psychotic experiences??? then he went on to explain, and I thought… wow those things aren’t ‘normal’. He said he’s recommending to my regular psychiatrist that the first thing we try is anti-psychotics. I am always told that I have a lot of insight into my illness, maybe not as much as it appears. Note: he sent all my notes back to my regular psychiatrist…and I don’t meet him for 2 months, so I don’t have an official diagnosis.

A little about my experience that brought me here… I took antidepressants 6 years ago, was getting a depression which I hadn’t had since I was a teen… I was hospitalized when I was a teen with anxiety and depression multiple times. When I took the antidepressant, I went up, up, up… I presented just like what is described as disorganized behaviour, so acute I couldn’t think, pressured speech, no ability with decisions, extreme confusion, extreme disorganized behavior - was called mania by the psychiatrists I saw then, etc. I ended up off work for 3 months. Then I went back with significant accommodations etc and managed to push through at work for 4 years (in a high stress, social services / human service, high management role). I was highly functional for the prior 10 years before this episode (that happened 6 years ago)… I was actively involved in the community, entertained at home, creative active mom, fun wife, an engaged manager, good friend…
In the past 3 years I began to go downhill. I couldn’t concentrate at work, used software so I could use voice to text typing, all tasks began to feel very overwhelming at work, in life, as a mom etc. Then I went off work 2 years ago. After a while I was overwhelmed when the phone rang, and if someone wanted to have coffee. I wanted to be alone, explaining that I need solitude to function. I found doing anything difficult, but I wasn’t depressed - I’d explain this to my outpatient group that I was not understanding why I was doing worse even though I was feeling better ---- if that makes any sense at all.

So… here are my questions/ concerns / confusion… please help me understand if there are things that don’t match with the diagnosis, I am having difficulty with this as some things don’t make sense to me, and I wonder if they match up or rule out.

  1. I have a lot of insight and I have read that a part of schizophrenia is not having insight. I can tell when something isn’t right, when I am ill, my symptoms, even when acutely ill - all in clinical ways. And I develop strategies.

  2. yes my functioning is way down. Compared to where it was. I don’t work, I NEED solitude and rest for most of my day until my husband and children are home then I can put my activity level up. However, I can make myself go to a bar with my husband once a month, I can make myself socialize and look ok and functional (but ti drains me and leaves me shaky afterwards. I function better when my husband or youngest is around because I can get cues on what to do next. However, during the day, I sometimes have more active days and even shop or run multiple errands and do housework. Maybe once a week. Thoughts?

  3. I am very sensitive to meds and side effects. The only medication that has worked for me is a seizure med used for bipolar. This is what helps me. The higher the dose, the better I do in every area. One suggestion made to me was that it may help my anxiety a lot and so that could have impact if its schizophrenia. My anxiety is severe especially when not treated, however, can anxiety medication be that much of a help for schizophrenia, like a primary med? If I am late with my med I get very shaky, my teeth chatter,

  4. I have severe disorganized thinking, confusion, executive functioning, MOSTLY when I am acute. When I am not as acute in my illness, then those symptoms are improved. Does things like disorganized thinking and cognitive issues significantly improve or disappear when not having an episode? Right now I am not doing too bad, so other than the (what would be called) 'negative symptoms", urge to withdraw, getting overstimulated and constant anxiety, and minor paranoia… I do feel like I am doing ok in those other areas. I can think and talk clearly and present more intelligently. When I am sick I repeat things over and over, can’t speak clearly, change topics over and over, etc. I am all over the place and so confused Im unable to get myself to do anything, sowing immense distress. Wouldn’t most of those cognitive things stay all the time? No matter what though I do have trouble with executive functioning. I mean I can write and speak very clearly, very different from when unwell… and write this, but it takes a lot of work.

  5. When I start to feel unwell, often if I take my medication late or after doing too much, - this is how it feels: my teeth chatter a little, I get spaced out, confused, stuck, nervous, easily overstimulated, and can’t think beyond the moment, my head moves to the side. If this were to go on for an extensive amount of time… it can lead to my acute symptoms.
    Are these really typical triggers? And symptoms? And early quickly onset symptoms (within hours)?

When the 2nd opinion specialist said that I had psychotic episodes, I later thought about things he didn’t even mention THEY DON’T EVEN KNOW ABOUT THESE SYMPTOMS ( my husband and I never thought about bringing them up bc its just part of me maybe) like the unreasonable paranoias I experience. I have convinced my husband and friend about things I am paranoid about (for a short time and then they try to talk me out of it), because I present like rational person so they can be convinced unfortunately.
The things the 2nd opinion doc brought up were things from my ocd questionnaire (like the color red symbolizing the devil) or believing I made it rain when I was a kid… etc.
Overall, I can present as a sensible functional person with social anxiety to those who don’t know me.

I’m here so hopefully I can get some straight answers about the experiences of others, rather than googling. Googling doesn’t seem to be so healthy for me.

Please advise me if I have gone outside the guidelines of the forum with my questions. I know this is long and I will keep shorter in the future. Its a lot of work for me to get this writing together.
Thanks!

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Hey @Insightseeker, welcome. You’re not at all outside the guidelines. The post might be too long for most folks to read, because some members here have difficulty concentrating.

It seems your biggest concern is about insight, well, a lot of us have insight, usually we lose insight in psychotic episodes, like when you try to convice your husband of a paranoia you have, right then you don’t have insight, you see?

You can also be schizoaffective, that has symptoms of schizophrenia and symptoms of bipolar, which would translate into mood stabilizers working for you.

That’s a lot more than some of us are able to take, but it’s not uncommon to not be so functioning and being able to go out at the same time, just without the will for it.

For me, the disorganized thinking disappeared with meds, but it’s different for everyone. I hardly have cognitive difficulties, can’t help you with that.

Hope this helps, somewhat.

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If you are constantly aware that your delusions are not real, then is it possible you might have schizotypal personality disorder? I read somewhere that STPD usually have more insight. Also STPD can present alongside other disorders.

It sounds as if you have a stable family support environment and that could be helping to keep your symptoms ‘mild’.

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Thank you for your reply Minnii

Yes, I see. You’re right, at those times I don’t have insight. I have been able to convince that our house was bugged at one point. So obviously I believed it. I also have fleeting hallucinations, like a lion, beast, etc. I know its not real after a moment of shock. Sometimes I have illusions but not often. I sometimes think inanimate objects are alive, like if I am cleaning something and I am thinking about how it feels and might be thinking about me cleaning it. Or a solar light choosing not to come on because it wants to wait until later. Or thinking my workplace may have hired a hitman… those are things that I just accepted as the way I think or believed all these years.

The 2nd opinion did say that it seems I do not get depressed episodes, but they are about me being stuck and no motivation. I dont think he was thinking schizoaffective but maybe that personality and maybe really bad motivation from it.

Are you saying that the medications helped your cognitive difficulties (or they caused it)? And that otherwise you don’t have any? I still have executive functioning problems when not acute, but distressing cognitive symptoms are improving with medications.

Thanks so much.

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No, if anything meds help. I always had lousy memory and now it’s better :slight_smile:

Glad I was able to help.

And yes, those are definitely examples of lack of insight… But you do have the insight now to see them! :slight_smile:

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Hi Bee3, Thank you. Yes, I realized with another reply that I indeed do not always realize its not real.
I read about the STPD disorder too, it doesn’t fit the severity of what I am experiencing but it matches a lot. The other thing about my ‘insight’ that I think I have… one further reflection I remember my psychiatrist saying to a student with him ‘you see this woman, she works very hard to be well, she comes into an office and looks like she is functioning, but she isnt’. And in that moment I felt like someone finally knew the truth. I don’t know how but he did. Even when I talk to people I start out ok and then I totally lose them and I am well practiced in how to look like I am understanding them, but sometimes I end up laughing or reacting in the opposite of what is appropriate. Maybe this isn’t as far off as I thought… Anyhow, it’s helping me understanding more.
Thanks

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Yes, thats what I was wondering, if the medications helped. I thought if someone has schizophrenia then they have permanent cognitive issues. I still have issues but so many improved in some ways that I wondered if that was possible. The more meds I take, the better my mind works. Im at my max.
And yes this forum has helped with gaining insight already. :slight_smile: All this happening and my functioning being so bad has been pretty distressing. I function like a totally different person. Good to be able to share. Thanks.

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No problem, if you need anything just ask away. :slight_smile:

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It’s very possible you have bipolar disorder with psychotic features. Some of the things you mentioned (improved insight, higher functioning-negative symptoms disappearing, when not in an episode) are distinct markers of someone who has psychotic symptoms within a mood disorder rather than someone who is schizophrenic. However since mood disorders with psychotic features are much less common than nonpsychotic mood disorders and even less common than schizophrenia, not as much is known about them and it is often misdiagnosed or not diagnosed at all.

But I’m not a professional :slight_smile: bring it up with your pdoc

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It sounds to me like you recently read a lot about schizophrenia and scared yourself into believing that you have some of the symptoms. The loss of focus, concentrating etc is all depression. The paranoid thoughts about hit men sounds like you’ve got an overactive imagination. If you had schizophrenia you would know it. You would be suffering and out of touch with reality, you wouldn’t be able to write clearly or think clearly. If you were paranoid, you wouldn’t be able to hide it either. Paranoia is not just some random thought that someone could be our to get you. It’s a mind state, and it has a destinct feel to it. Episodes of disorganized thinking can be explains by a number of illnesses not just psychiatric ones. Schizophrenia is typically not episodic either so that doesn’t fit.
I don’t know. It sounds like you’ve got a pretty incompetent shrink or one that doesn’t have much experience with schizophrenia. Now there are schizophrenic symptoms, but that could be bipolar, depression, Parkinson’s, dementia. Schizophrenic symptoms don’t mean you have schizophrenia either.

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You sound so familiar! I am a high-functioning schizophrenic, and I relate a lot to what you have written. Sometimes I don’t think I am really sick, because I can see other people doing so much worse than me. But if I stop taking my meds, I am quickly reminded that I do definitely have schizophrenia. My doctor was also amazed with my level of insight. I guess we are pretty rare in the world. We aren’t so rare on this forum, though. This is the first place where I’ve been able to talk to other schizophrenics who have jobs and families and live a fairly normal life. It’s nice to hang out here and not be the one who is always different.

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If you have traits/symptoms that could be Schizophrenia AND you have, or have had in the past, symptoms that could be Bipolar Disorder, it’s very likely that you have Schizoaffective Disorder.

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Thank you Anna. My insight into illness and strategies I think has been good since I became unwell years ago. But from the previous replies Ive gotten its helped me understand that because i don’t realize I am unwell when I am having an episode then I don’t have insight. ie believing that my house is bugged (refusing to speak when I am upstairs, only whisper in my basement in the basement if its something I don’t want others to hear). Because I don’t have insight then, i don’t actually have it.
Also the cognitive issues improved with meds, but not the negative ones. They are pretty bad for the most part… ie I havent turned on a TV for months and sit for abour 6 hours a day doing nothing, I can’t. But when my hubby is home it helps me do more. I feel really dependant.
Setting goals is hard of me. For the past couple of years I have had a goal sheet posted from my husband of things like shower. WHen I see him eat after work it reminds me to eat. So I still have ‘executive functioning’ difficulties in my brain. – planning, setting goals, and have moderate problems with concentration.
The docs have explained, both of them, I don’t have bipolar.
But I don’t know if there are people with schizophrenia who find it helpful to take seizure meds, or that are able to go out shopping one day a week. Most days I cant move. I don’t shower for 2 or 3 days at a time… those are the things that I have insight about and develop strategies for. That was part of my job before I went off work.
Are there days that you do better than other days, like days when you go shopping and run an errand (even if it exhausts you) maybe once a week or so? Do you ingiht to know what your struggles are? Like I can describe my struggles… like that I don’t want to be around people, I told my doc that on my own. I realized that I was wanting to be alone all the time and to be away from everyone. I don’t want to be around people (and I don’t socialize much, usually just for my husband to keep our marriage go out somewhere) but knowing ive changed does distress me, that kind of insight.
Thanks for listening. Appreciated.

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Thank you @MeghillaGorilla1
Can you read what I write to Anna and let me know what you think. When I am in actual place of paranoia, like an severe episode, (not like mild now, when was severe for months), then I am following cars around the city. I have binoculars in my front cabinet. I take pictures of cars I find suspicous. I wont put papers out to the garbage until garabge day beucase someone is stealing my garbage. It was then I was refusing to even speak about private things unless whispering in my basement. It was when all the other symptoms were acute. I have mild all the time of this, and I am aware of that, but I still feel there is legitamcy to it. Theres a lot I havent written.
Im really confused beucase from what I was reading it seems like people with schizophrenia can’t drive…beucase I can drive, for now, but had even prepared to not be able to drive, I had been thinking all this time it is cognitive and functioning decline from Bipolar Disorder.
And I research strategies ---- all while I am not acute… right now Im not acute so I can drive and research. etc. Also beucase of the filed I worked in that was a big part of my job, helping people overcome barriers and create strategies to accommodate disabilities, Ironic hey.
Honestly the more I write to people in here, the more I realize that maybe my situation is little worse than I thought.
Do people with schizophrenia feel extreme confusion all the time?? Meds have helped with this, maybe by helping with anxiety. I just don’t feel the same level of confusion or inability to drive etc…
I am a mother with 3 younger children so it’s possible that forces me to function more at the end of day, but still limited.
Nope my psychiatrist is excellent. He’s not the warmest person but he’s very competent. And as a favor he was able to get a well known specialist to see me (and that Psych actually pulled another doctor into our meeting), it was at a specialized centre for brain issues in another city). See even now I don’t want to write much specifics beucase I feel like I know that my information will be linked too easily to me and be found.
I think I am just on here to work through some things in my head.
Let me know what you think if you like. Appreciated.

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We can drive, if we’re well of course. I think with any mental illness it’s not advisable to drive if unwell, although we can and a lot of us do.

Not all of us. My thoughts were always crystal clear, not disorganized.

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Thank you @Minnii
Thats the stuff I get confused about. When I read all that clinical stuff on the web it seems like if I had schizophrenia I couldnt drive, etc. I drive my son to school most days 2 min trip but in my pj’s lol, I don’t have an ability to navigate through my day much but I am well enough to drive - at this moment. I get disorganized thinking for sure when I am sick and still when well compared to my old self but not as bad. Thanks for your help.

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It’s one of the issues with this illness, it’s still regarded as very incapacitating when it’s not always the truth.

No problem, glad to help.

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Thank you @Ninjastar Just read your post. Hard to get used to navigating the site.
Thank you. I am so glad to hear that maybe I am not alone. I can’t work right now. Not when I will but one thing at a time. It takes everything in me to get through a day. Although I am not functioning anywhere near where I was I am still working hard to be a good fun mom and do the most important things. My goal for recovery are things like showering eating exercising and to do more during the day. Thats a long way off from the passionate and engaged and social person I was. One day at a time. Thank you again

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@Sooner88 yes, I wonder if when theyve worked through everything if that may come up. They are ruling a lot out so Ive had MRI’s getting EEG’s etc Thanks.

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@Ninjastar
Sorry one more question. I And thank you. You said if you stop taking your meds you are quickly reminded that you have schizophrenia. I just don’t understand how if I am even late for a med my functioning becomes so different and it shocks me how what I feel and so quickly. Thats how I know that I need them, if I miss a dose look out. I can head to an acute (tortunous place unable to finction) Its the one thing that scared me at the beginning of all this years ago… how can my mind depend so much on this drug? I can’t even handle sound of music, everything is noise, from one dose being missed that is how I feel within a day.
… Can I ask what that looks like? Like how quickly do you feel unwell and what does it feel like?