No worries. This seems an unusual case and an amazing girl— the sort that books are written about or you find written up in medical journals. No doubt something novel is going on.
Some of my doctors and therapists are published and thankfully any reference to my case is well disguised. When you’ve lived through delusions of reference, the last thing you want is to be even mildly famous.
Thank for weighing in! I do want to take her to a neurologist I think. We went to our first appointment with a psychiatrist office, and I do not like the way it went at all. There was a psychiatric NP gatekeeper and while I am quite receptive to and fond of NP care, this woman was clearly just running down a list of questions and threw out several drug recommendations as if we were supposed to simply pick. She had never heard of PAI assessment, and her armchair assessment was to treat as if an anxiety disorder as she felt like that was far more likely given her high functionality.
She asked daughter a rather leading question about her psychosis symptoms getting worse with stress, and daughter was like “No, definitely not. That’s part of what caused me to really start worrying. These symptoms did seem to get worse around the time school started last year, or at least I became more aware of them, but the stressed dropped to almost zero over the summer and the hallucinations continued the same”.
Yet… NP stuck with her most-likely-anxiety diagnosis, also recommended SSRI’s for treatment as an option. When I asked her whether that might make things worse if the schizophrenia diagnosis is correct (because as I understand it, SSRI’s increase serotonin, which would be fine for anxiety but potentially NOT for schizophrenia) she just kinda glossed over my question and offered a different drug.
Yeah, no thanks. I mean, I don’t know if that’s right about SSRIs or not - that was simply a question - but I need someone who can talk to me intelligently about these drug options.
Neurologists are hard to find here but I have some names. In the meantime she’s scheduled for the MMPI assessment and a different office where she will be seen by an actual psychiatrist in a few weeks. I don’t know if any of those things will get us any closer to where we need to be, but it’s something.
I agree you need a second psychiatric opinion. It’s very common for anxiety due to psychosis to increase under stress and/or lack of sleep. My symptoms and anxiety are generally at their worst when I’m jet-lagged when traveling in foreign countries where I don’t speak or know the language well. It’s also common to be less than honest about or overestimate your coping skills. Often you are nervous and don’t want to say anything that might make them overprescribe or give you a medication you don’t want.
SSRIs seem a risky suggestion here. Psychotic symptoms are found in a number of SMI— including bipolar and schizoaffective disorders where SSRIs are generally avoided due to the problems you mention— triggering manic states is the chief worry. Benzodiazepines, buspirone and some of the newer neuroleptics are safer choices short-term, although long term benzodiazepine use can cause dependencies. Again, I’d be inclined to think a low dosage of an atypical AP medication might be an option. My father took buspar for years for anxiety, I’m not sure but I’m inclined to think that my brother’s bipolar and my schizoaffective disorders may have influenced that decision.
Another thing to consider is genetic testing. While I think testing capabilities are oversold, sometimes it can narrow down some of the trial and error of prescribing medications.
Don’t be discouraged, it can take a while to find a good psychiatrist. Here’s a link to some of my criteria for choosing psychiatrists, and an account of my first disastrous encounter with one:
Oh boy, yup. First I’d absolutely find a different psychiatrist. And pairing a psychiatrist with a therapist who does talk therapy (like CBT) might help her identify her coping skills and help her adjust to any changes that worry her.
But first, no doubt in my mind, and worrisome to me that the psych didn’t order/suggest it immediately with your daughters symptoms, is to see a neurologist and get imaging done. Yikes.
I speicfically asked about a neurologist too, thinking it would help to get a referral.
She said she didn’t see any evidence to suggest seeing a neurologist was warranted. Again this was a psych NP, not the psych himself. Also worrisome to me was she didn’t even see fit to bump us up to the doctor she serves for further evaulation. We will not be going back there.
Not sure if I understand what you mean by stress dropping to zero and hallucinations continued the same. I think the NP is asking if your daughter’s hallucinations get worse when she is stressed. You seemed to have confirmed it in your writing: “The symptoms did seem to get worse around the time school started last year.” By the NP’s logic, that can be indicative of psychosis. When I don’t sleep for a night I get symptoms too.
SSRI increase serotonin. One theory states that schizophrenia happens because of too much dopamine, which is why anti-psychotics lower the amount of dopamine in your brain. In some cases, dopamine being too low can cause the person to experience negative symptoms. Serotonin by itself does not affect schizophrenia. However, if your daughter is in fact bipolar with psychosis or schizoaffective, then the SSRI might cause problems. I am pure schizophrenia with depression, which means SSRI would not make me go manic.
I do agree the NP does not seem very capable. I don’t have your daughter’s full list of hallucinations, but I think a diagnosis of schizophrenia should be based on symptoms rather than functioning as is stated by your NP. I have also read some people on the diagnosed forum saying that some psychiatrists also saying they cannot have schizophrenia because they are too high functioning. It is quite illogical, I think some of the psychiatrists fail to consider the fact that some people are high functioning purely because they are on medications.
So yes, her initial uptick in psychotic symptoms occurred during a stressful school year. She did attribute that to stress and didn’t really discuss it with anyone. What alarmed her was when she went home for Covid, stress dropped, and but psychotic symptoms did not diminish at all. Stress dropped even more (to pretty much zero stress) over the summer, and her psychotic symptoms continued to remain steady. That’s when she decided to ask for help.
Thanks for more info about the medications. Her PAI assessment puts her at severe psychosis and severe anxiety along with moderate depression. She is not self-reporting depression however - that just came up on the assessment for some reason.
Hopefully the MMPI will be more thorough.
I’ve found depression tricky at times to self diagnose. It often presents with me as anger, frustration, irritability and sleeplessness. I thought depressed people slept all the time and had a lack of feeling.
I’d misunderstood that she was experiencing symptoms even without stressors. I’m unsure isolating due to COVID is particularly stress-free, there’s less direct stimulus, but uncertainty, isolation, denial of stress relieving activities all mean you’re trading one set of stressors for another. Coping mechanisms do well with familiar stress, but not so great with uncertain stress and free-floating anxiety.
Hi Serendipity, Welcome to the forum. I just wanted to weigh in a little regarding high functioning. We were told at Family to Family,( NAMI’s free class that is now available in a remote format!) that many/most of our children are very smart and tend to be high performers before the scz progresses and begins to impact their lives. It is not unusual for our adult children to have been highly sociable, athletic, academically successful and artistically talented.
We parents often ponder our adult children’s past and try to find things that may have been an indicator when they were young. Many of our children were always highly sensitive. I think the fact that our children tend to be very intelligent helps them a good deal in handling the brain disorder, particularly in the earlier phases. I suspect all can only do what is possible after the damage is done to their individual brains.
As I look back, I can see that there were small clues. There were times that my maternal instincts for my own child rang a bell and I paused to reflect and couldn’t see anything. After my son’s diagnosis all of those times were revisited and suddenly were quite clear - especially the more I learned about scz. My Family to Family teacher says that only hindsight is 20/20 with scz.
My son did very well at high school and university. He was a gifted student, athlete and musician. At times he can still access his incredible intelligence and talent. Scz cycles and progresses.
I envy you that your daughter is aware of her situation and wants help. Finding the right help can be tricky, you have received excellent advice in this thread. Caught early, with the proper meds and the right doctor and therapist, she can still reach her full potential.
does she have sz or not…firstly i quote my son on this…well in his opinion when sz hit for the first time, it was mind blowing, totally bowled over, totatlly out of touch with reality, in another world or dimension…and he had to give up work, he was so unwell that he didnt even notify his employers that he couldnt work, he just never turned up…as he said when sz hits for the first time its like a bombshell…it would totally blow you away, and it would disable you big time
so does your daughter have this, in my opinion i dont think so…but you should talk it over with your psychoatrist