Family and Caregiver Schizophrenia Discussion Forum

Could it be a misdiagnosis?

Last February/March my 19 year old son experienced a first-psychosis while in college. He does have a history of anxiety, but he had never experienced anything like this. In a 4 month time period, he had being smoking pot daily, tried LSD, ecstasy, and even cocaine. Prior to this he had smoke pot 2-3 times during high school. With in a few weeks of the first signs of psychosis, he had a complete break down initially believing he could communicate with the dead, play any instrument and then finally believing he was a “Jesus-like” entity. We got him into treatment and he responded well to his medication. He started with 256mg monthly injection of invega and which was reduced every other month until he was down to 78mg per month. His delusions disappeared, and have not returned in nearly year. He currently has a part-time job and is going to community college while living at home. Shortly after the psychosis, we had a full psychological evaluation conducted at Vanderbilt University. The Psychologist said that his tests do not indicate SZ, but instead extreme anxiety. My son’s psychiatrist holds firm to a SZ diagnosis and says he will take anti psychotics the rest of his life. My hope was to continue to lower his medication with the goal of getting him off of the medication all together. His doc says that is not going to happen. I truly believe the diagnosis of SZ is incorrect because the short period of psychosis, his outcomes on the low level of invega and the psychological evaluation. And, I am optimistic by nature.
How will we ever know if the diagnosis is wrong? Should I get a second opinion from another psychiatrist?

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In your situation, I would be happy that my son has responded so well to treatment and is making positive progress to regaining an independent life. While it is not easy to accept a diagnosis of SZ, in and of itself, it isn’t necessarily something that will hold your son back. Regardless of the label, he his on a low dose of antipsychotic and has not had another episode of psychosis.

My understanding and experience is that it is not simple to diagnose schizophrenia. Your son seems a good example of the positive results of early intervention and treatment. If your son’s psychiatrist has experience with SZ, and interacts with your son frequently, I would tend to listen to them.

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Thank you for your insight.
I am grateful everyday for how far he has come and hope he continues to make progress.

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I thought the same as you ( similar story ) and i lowered his meds twice (with permission of his psychiatrist) and both times he got worse . Getting a second opinion may give you peace of mind . I did , its very hard to except until this day , almost 3 years for me now .

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Thank you Linda. Even though he is doing so well, it is so hard to accept. I just want his life to be as manageable as possible. My biggest struggle is how he will function without me and his dad especially with the outrageous cost of his medication. I know, one day at a time

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I feel the same and i am really concerned about his future without me but right now as you say one day at a time . Lots of love and care helps them to heal .

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If he is able to work, he could well have insurance to cover the costs. If he isn’t able to work, then he will be eligible for Medicaid.

It is early days for you, and your son seems to be doing well!

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My son’s story is almost the same as yours except he has gone through several different antipsychotic meds before invega susetnna shots. He will get his second shot this week and it has been very positive as yet. I hope my son does as well as yours has on this.

His diagnosis did change from SZ when he was first hospitalized in June of last year to major anxiety disorder, schizoaffective bipolar type 6 months later.
If you’re sincerely worried about him being misdiagnosed, I would think a second opinion would be very important.
Have you gone to the Invega sustenna web page to get a savings card for his prescription?
I recommend it, if you havent. If your eligible, it can cost as low as $10.00 a shot

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Unfortunately we had to change his meds from invega to abilify monthly injection a few of months ago because his prolactin level was elevated. His doc started him at 400mg and has now reduced to 300mg. She likes to start at a high dosage to make sure it works. We used the invega manufacture coupon without any problem. My insurance will not accept the discount from abilify and we are paying $680 a month until we meet our deductible which won’t take long. As far as invega, it worked great to get his delusions (his only symptom) under control. But, he has experienced many side effect including akathesia, weight gain (60 lbs), and sexual dysfunction. He now takes propanaol for the for th akathesia and metforman to protect him from diabetes. His weight is decreasing on the abilify - he lost 20 lbs last month. Prior to his psychosis, he was a pretty good writer majoring in journalism in college. He told me yesterday that his struggles to write now…he has minimal creative thought. It just breaks my heart.

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My son was diagnosed with schizoaffective at 21 years of age and schizophrenia at 25 years of age, He has had mental health challenges since he was a young child, but not psychosis til his early twenties. I too did not want to believe he had “schizo” anything as I know the long-term outcomes are not good.

See is there is a “first psychosis” program near you. There has been huge improvement in outcomes for those newly diagnosed and treated with comprehensive first psychosis program.

My son responded very well to abilify maintaina and achieved remission in his positive symptoms. Basically his delusions went away. He stayed on abilify for a year remained symptom free then went off it and psychosis did not reappear for another eight months. During that time I hoped beyond all hope his diagnosis was wrong. My son also smoked pot heavily and did other drugs in his late teens, early twenties. I too hoped drugs were the cause not schizophrenia. After second episode of psychosis there was no doubt my son has schizophrenia,

Once your son is without positive symptoms (delusions and/or hallucinations) on antipsychotics for year or two, there is some evidence that some people with schizophrenia can be weaned off antipsychotic medication. The problem is there is no current way to tell who will remain without symptoms and who will relapse. But medication wean with ongoing psychiatric supervision is something that you may consider with your son and his providers in the future.
The diagnosis sucks, its heart breaking to accept, but one positive no matter whether you son’s diagnosis is right or wrong is he responded to well to antipsychotic medication. For many people with psychotic disorders it takes multiple different antipsychotic medication trials to find one that works and some never achieve symptom free with medication. He was also treated at early signs of symptoms which is best for long term outcomes.

Next steps: look up first psychosis programs and also consider contacting NAMI National Alliance Mental Illness which hopefully has a chapter near you to learn more about the disease and treatment. NAMI has extensive information on all mental health conditions online, so can help you no matter the diagnosis.

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I think drug abuse could definitely trigger psychosis.

My daughters psychosis was triggered from a prescription medication she took at the age of 12. Unfortunately the psychosis didn’t go away when the medication was stopped. It took us over three years to get her stable. At one point she was delusional.

Also while my oldest son now aged 21 was abusing drugs/ using marijuana he had unusual thinking maybe delusional and spent many many months emotionally wrecked, crying daily or on the verge of tears or having a flat effect. He refused to get mental health treatment. He is finally off of drugs and going to school. But I can’t really say if he’s better. He really seems better but he’s so quiet. He isn’t the type to talk about his issues. I worry about him.

sz may run in my daughter’s fathers family because I know her aunt and cousin hear voices and her uncle told me stuff that sounded like he was hallucinating or delusional at the time. My son and daughter have different fathers. I have seen my son’s father in drug triggered psychosis from marijuana. Sons father is dx bi polar.

With all that said I have accepted my daughters sz dx. But I also know psychosis can be drug abuse related. There’s also MDD with psychosis all though they may have recently added that on to the sz spectrum, I don’t really know.

I hope your son continues to improve and do well. Sometimes there is hope for the future even with sz.

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I am sure that drug use triggered my son’s psychosis. That said, he may well have developed it anyway, as I think the drug use most often is a trigger to something that is already a possibility. My son had mental health issues starting at a younger age. It could even be that the drug use was something he turned to in response to schizophrenia symptoms that were already developing. We will never know…

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First of all, I’m sorry your family is going through this. It is tough. Your story is similar to mine, in that my son experienced his first psychosis while in college and it was drug induced (K2). Without going into all the details, he ended up being hospitalized 4 times with psychosis, one of which was drug induced.

He was misdiagnosed until the 3rd hospitalization when the psychiatrist there diagnosed him with SZ. I was crushed. He responded well to the medication and was stable until…you guessed it…he decided to stop the meds and he ended up in the hospital again.

I am happy to say that was last March and by June he was living on his own and working as a waiter. By September he got a full time job in his field and has not looked back. I am not foolish enough to believe there won’t be any more episodes, but I’m enjoying the peace while we have it. He is on Abilify and seems to finally understand that he needs to take the medication and stay off weed. He has expressed concern over the damage to his brain each time he goes into psychosis, and he hates the psychiatric ward so I’m crossing my fingers those two things will keep him compliant.

Like your son, he really struggled with concentration, creativity, focus, memory and other things after his last psychosis. He has reported to me that slowly but surely all of those things have gotten better with time and the change in his medication (maintenance levels vs prevention). I tell you this so you can have hope the same will happen for your boy.

Having the diagnosis of SZ was a long time coming for us. I was crushed by it initially, but now I am thankful for it. Proper diagnosis is critical so that the appropriate treatment plan can be put in place. Get a second opinion, of course, but don’t be afraid to accept the SZ diagnosis if the medications are working and your son is improving.

The folks on this message board are fantastic. I haven’t visited in awhile because my son is doing so well, but when I saw your post I wanted to respond as our situations bear some similarities.

I wish you the best!
Nancy

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@nancers

I’m over 30 years into a similar recovery. I had a bad experience with some pot that may have been adulterated in high school and it may have kicked what may have been latent bipolar disorder into SZA. It’s so hard to be sure about such things. My brother is more squarely in a typical bipolar category and I had some people offer opinions that SZ and Bipolar Disorder in siblings would be rare genetically.

I would encourage you to have your son add talk and other psychosocial therapies to his treatment. Maybe CBT or more traditional supportive talk therapies. I think learning new skills that engage additional faculties is helpful too, and may allow him to wire around any damage to his brain. I especially found activities that involve sound processing to be helpful. Things like ear training, learning a language or musical instrument, singing in a choir, public speaking and things like that.

The idea is to help train his audio processing skills to help him learn to filter out distractions. My experience is SZ impairs your ability to do this on your own and interferes with concentration as a result. Medications are only partially successful at restoring these functions. Although I feel the phenomenon of neuroplasticity can be overblown, learning new things stimulates the brain and is your best bet at preserving, regaining or developing new functionality.

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@SEC I just wanted to let you know my son has had the first two initial injections and the side effects for him are intolerable and won’t be getting anymore… BUT… this is the 1st med where he has shown wonderful results with his Sz symptoms. It’s heartbreaking to see him so physically ill from the med but clear in his thinking. We’ll go back this week to see what we need to do next.

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@Maggotbrane Thank you so much for taking the time to share your experiences with me…so very valuable. Fortunately my son is very open about his therapies and is always willing to try new things, so I will most likely copy and paste your suggestions to him. He is familiar with CBT and seems to really like it, so that’s a good thing to hear from you. He also was telling me about some of these audio things he was listening to online, so while at the time I thought it was odd, after reading your post, I am thinking it is probably a good thing.

Thanks again for your kind response, it helps tremendously to read the words of others who understand and can share experiences.

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Might these be ASMR? (Autonomous Sensory Meridian Response). These are recordings of benign or pleasing sounds that invoke a pleasing or euphoric response. YouTube at one time was littered with videos like this. Things like whispering voices, crinkling paper and eating popcorn etc. They somehow got associated erroneously with sexual stimulation, but most practitioners think this came from misinterpretation. Apparently if you say euphoria, some people’s minds go directly to sex.

The phenomenon was discovered a bit after my time, but I don’t see much harm in it. Listening to them is a bit of a passive activity, but baby-steps of course. Most of my ‘voices’ were more like whispers on the edge of my perception which may be why I found them more benign or helpful rather than menacing.

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The first couple of months on invega shots were terrible for my son. The akathisia was the worst. He paced constantly and could not get comfortable. But, it did completely clear up his delusions.
His doctor prescribed a beta blocker which helped with the restlessness. He powered through and every other month his dosage was lowered and the side effect improved.
It was so hard to watch him suffer and I don’t know if I would got through it again.
My son has now been on abilify injections for a few months and it has gone well so far. He still has some akathisia.

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After I read your post about your son. I spoke to my sons dr about Amilify and he said that Akathisia is its biggest side effect. With Invega he is physically depressed with nausea and akathisia He has the the extras to help Benztropine and propranolol but they dont really do the job 100%
Im glad your son is doing well and is able to tolarate the akathisia with Ambilify. Im absolutely amazed at how courageous these kids are.

Is he as clear thinking on Ambilify as Invega?

He is clear thinking on both. Invega was the first antipsychotic med he took, and he did well especially after we were able to get the dosage lowered to 78mg. He was clear thinking within the first month. He had to change to ability because the invega cause elevated prolactin. He started the abilify in October with 400mg which was reduced to 300mg this month. So far, so good at this dosage.

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