Delusional Brother, social media making it worse, anti-medication father, etc

My brother(23) has been having persistent delusions for more than a year now, almost 2 years. He claims that all of his friends(mostly from high school) are constantly monitoring him via social media and they are trying to take him down as a form of revenge, even going as far as to saying that they’re hacking his Apple ID, or they’re listening in on whatever he’s saying/doing at home. He even believes things like celebrities making posts online are somehow related to him, or dedicated specifically to mocking/hurting him. Because of this, he’s cut himself off from all of his friends and distrusts everyone, trapping himself inside his room every day and barely eating.

Based on what I’ve looked into, it seems that he has persecutory delusions, delusions of reference, and delusions of grandeur, with mostly delusions of reference. At first it was only his friends from high school that he thought were doing malicious things to him, but it’s gotten worse to the point where he thinks the entire family is plotting against him too. We are constantly getting accused of doing things on purpose to hurt him, and it hurts to hear when all we want is to help him get better.

A lot of his bad thoughts tend to stem from looking at his social media, so we tried to take that away from him, but unfortunately, his current job requires social media and the use of media in itself is very heavy (film/TV related). And when he’s cooped up in his room, there’s nothing else for him to do but look at his phone or watch videos online(It doesn’t even have to be from social media that triggers a negative reaction, he makes a connection with anything on a screen, and things in general). It’s his coping mechanism but it’s hurting him at the same time.

This has affected us terribly, and we are broken and helpless as to what to do. We’ve gone to 2 different psychiatrists, but they were unhelpful and lacked any compassion. He’s taken Abilify and Olanzapine, but he stopped because it was making him “zombie-like” than doing anything for him. The psychiatrists only commanded to increase dosage but did nothing to help him emotionally or mentally, and didn’t bother to explain the reasons for dosage increases (it is a sensitive subject because my parents are already wary of anti-psychotic medication). Because of this, my parents have grown a distrust towards mental health professionals, and my father is entirely anti-medicine, and believes he will eventually just “snap out of it”.
He is currently unmedicated and barely keeping it together enough to do his job, being miserable in his room while we do whatever we can to keep looking for help. We are afraid that it’s only going to get worse. Any advice or solution would be greatly greatly appreciated. And I would really like to know how to find a competent and compassionate mental health professional so I can change my father’s mind about medication. Thank you for reading this far.

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Hi helpneeded, welcome to the forum. You and your parents are perfect candidates to take NAMI’s Family to Family course together. These days, thanks to Covid, its easier to find these courses online.

Meds alone won’t fix the situation, our family members who are neurodiverse/schizophrenia need a lot of assistance and patience going forward in their lives. NAMI’s Family to Family will educate you and your parents and help you form strategies together.

In the meantime, if all three of you could read Dr E Fuller Torrey’s manual for “Surviving Schizophrenia” for knowledge and Dr Amador’s "I’m Not Sick, I Don’t Need Help for helping you use effective communication methods with your brother.

It is not unusual to feel broken and helpless at first. Everything can get better, you will all learn how to find a way forward together.

Great that your brother is currently working, try to keep his stress levels down the best you can. Many of our family members do spend a lot of time in their rooms by themselves. Its not always a bad thing, just being around people while dealing with psychosis can be quite stressful.

We are told that the stress between supporting family members is often based on the family members being on different levels of understanding. My husband was alway behind me in processing the reality of our son’s situation. A lot of patience is needed all around.

Your local NAMI support group can be a source to get names of local doctors and therapists from people in similar circumstances. Getting everyone educated is key. Good luck!

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@helpneeded welcome to the chaos. Lots of great people, resources, and shared experiences to help you on this journey.

We faced this first crisis about 2 years ago. Meaning, we faced problematic behaviors and the possibility that something deeper was happening to our 18 YO.

Not every journey of discovery ends with a clear diagnosis. He could snap out of it. But maybe not.

So NAMI, and books as recommended above are so very helpful and hope-giving. Even gives you the words and resources to help educate your entire family on this experience.

I would swear that YouTube poisoned my son. The endless, negative, conspiracy ridden rabbit trails that the admitted algorithms drove him towards. I even engaged an attorney to look at a class action against YouTube, etc, on applying those algorithms. I believe for children, teens who struggle with potential mental health issues, these algorithms are reckless and dangerous. The attorney explained to me a very controversial statute that lets ALL these content-sharing sites off the hook. They are simply not allowed to be held responsible for intentionally feeding my child this brain poisoning.

Heavy marijuana use didn’t help.

Fast forward a few years, after we found helpful, caring experts in this field, and found treatment centers that can help create the right
Med-mix and expectations, we’re doing ok.

Our son was confirmed with an SZ diagnosis. 4 different docs. We found the right med mix (after LOTS of failures!!). He is staying compliant. Working part time. Mostly. And has his own apartment. All of these seemed IMPOSSIBLE just a few years ago at the onset.

But NAMI helps reframe your expectations to help your child live a ‘life worth living’. Certainly not we’d hoped and prayed for. Nothing close to our dreams and visions for his future. But love has persevered. It has drawn our entire family closer. It still sucks. But at least in the low times (forgot his meds, quit his job, wrecks his car…again), we have hope.

Hope this gives you some hope. And hope this isn’t the ultimate diagnosis. But regardless, hang in there. You’re not alone!!!

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@hope You are always so kind and helpful!!

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@Sando thanks, and thank you for always sharing your parenting examples and perspectives. Your son is a lucky young man.

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I think you are doing the right thing by continuing to search for a psychiatrist your brother feels comfortable with. In my son’s case, he didn’t like Abilify because it made him restless and his doctor immediately stopped it. He’s had a good response with olanzapine and quetiapine.

There are concerns about long-term AP use, but in my son’s case it wasn’t an option not to take them because the auditory hallucinations and delusions were just too overwhelming. If a person can basically cope without them, maybe that’s an option.

If he’d be willing to attend a NAMI peer to peer group, that would help. He could compare notes.

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Hi, my son had this paranoid type prior, and is currently not paranoid, but if he goes off meds get paranoid. He takes 150 mg. Oxcarbazene 2 x DAY, 10 MG. Olanzapene, and 20 MG. Trintillex. I read the abilifiies can cause gambling addictions, and my son was addicted to gambling. He at least is not paranoid on these and delusional, or violent. But not cured, and if he goes off gets mentally out of it.
I read a study that from North Chapel University in march 2021, where they found a correlation of those that had “cat scratch fever” (germ, virus, or bacteria) and it lies dormant and found it interesting that 12 of 17 schitzophrenics had that in them. (cats, rats, mice, dogs can carry, and scratch one and they get it, and or it lies dormant…they are doing more studies) they said that potassium iodine treats the cat scratch fever and was possible treatment.
My mom also had biopolar and she needed lithium (mineral, salt) as was ok after getting on that.
Definetly push your father to get medication treatment. so far only thing, and therapy.
My sons father also didnt get him medicine and he got worse and worse at his house.

Hello I am new to this group and your experience sounds so much like mine only I am at the beginning stages and trying to figure out and understand what is happening to my 17 year old son. Thank you for sharing.

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Happy to share. This forum is a peaceful place to share the anxiety we live with daily. Our son was a tough case from 7-8th grade. Behavior issues, defiance, and explosive outbursts increased through high school. Anxiety and learning challenges (dyslexia, ADHD) forced us to homeschool from 10-12th. Hell on my wife.

Amazingly went to freshman year of small, private school, and passed (barely) a few courses. But started smoking weed like a maniac. Lots. Daily.

Seemed to help him cope with all of his feelings. We’ve learned this was likely the predromal phase. Full episodic break a year later. Hospitalization. Treatment facility for 6 months. Found effective med mix. Back home.

And now we have periods of intermittent independence (his own apartment, job, school), woven into periods of manic behavior (quitting job, ignoring hygiene, disregarding meds, etc).

We can see a brighter future on some days. But it helps to drink a lot (I’m sure my liver suffers from his diagnosis) for me to self medicate. I’m smart enough to know that it’s stupid but in pain enough not to care sometimes.

Find a way to have grace on your child. And on yourself. If this is your path (ie, eventual confirmed SZ diagnosis), then join NAMI, read books, study LEAP, CBT, etc. And know you have fellow warriors on this forum who can relate. Keep the faith.

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So sorry…NAMI…has a free 12 wk class to learn about mental illness…my sweet son got Sz , showed up around 16 ish…i cried the most of classes as the newbie with a 17 yr old…and others in class had been dealing with for yrs. ,mostly 21 to 25 yr. olds…years of trying to figure out exactly if it was SZ or bipolar. Since father and I divorced ( father a narcissist and maybe sociocpath), my son witnessewd DV at 4… father didnt help situation or our son get treatment and fed into his paranoia blaming me…our son still blames me for his 9 hospitalizations…now 25, currently struggling with episodes again…as he went off meds… after being consistant for a year and getting a routine job…i keep trying to encourage him to do things for a better life… he mostly sits in his room…looks at computer…i also now do less…not sure how much is from covid shut down changing, and sad for him…

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2 steps forward, 8 back. Then 4 steps forward, directly onto the train tracks. Then recovered from train wreck and 1 step forward. Then…

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