Schizophrenia is the price we pay for minds poised near the edge of a cliff

As someone who is currently dating someone with history of psychosis, I have vested interest.

90% of the time she is truly the most amazing, compassionate, full of life and thoughtful person one can ever meet. Then there are times when it’s truly awful. She can barely sleep at all, leaves house without telling anyone seemingly thinking the presence of third person around. And she strongly feels others around are judging her hard, giving non verbal communication. It’s truly awful.

I didn’t know to the full extent her symptoms when we started dating. But one thing that was clear was she could barely sleep at night. Or sleep too long. There was no “normal sleep cycle”.

Over the time, some triggers are noticeable. Places with crowds, bright lighting, or sometimes stress at work. Aripaprazole so far seems to be holding up, no one knows for how long. I hear meds become resistant at some point. I don’t know what future holds. Kids are probably not an option. Although she very much wants it.

Did you ever check for sleep apnea? The tests for it can be done at home now if anxiety would otherwise be a concern.

I have schizoaffective disorder bipolar type, and I just wanted to acknowledge and thank you for staying with your partner. I’ve never been able to get someone to stay through my illness with me through my life. But that’s probably because I am man.

I was on so many meds. I can’t even count them. Now I’m not on any, and I consider myself essentially cured after living with it for 35 years.

If she has triggers, that means she does not have a disease , it means she’s a different person that sensitive to different things. If someone who carries the celiac risk genetics, never eats wheat they never get celiac disease. If your partner was never exposed to triggers, you would never know she had a mood disorder. Do you see what I mean?

Did you just suggest that lactating might cure schizophrenia?

Thank you for sharing your journey! Most difficult part of this relationship has been to have her not worry about me leaving her because of her symptoms. Communication is the key. The only thing that can get tiring is when sleep schedules are so messy, and I have to go to work in the morning.

If you don’t mind sharing, what was your progression towards being cured? Did you do anything different lifestyle wise? I have consulted many psychiatrists but the general consensus seems to be that the management is the only option.

I am also somewhat concerned about the genetic component of it. The general feedback I received from pedestrians is most meds are not safe during pregnancy and postpartum episodes are very likely. And the risk of passing down is also about 10-20%. Her dad’s sister also seemingly had it.

> Kids are probably not an option

I’m assuming this is due to life complexity? If it’s generic fear, you could consider adopting (although that also has the potential to be difficult in it’s own way).

Also wanted to +1 to the other comment, you seem like a wonderful person, thankyou for making the world a better place. I hope I “grow up” to be like you :)

Even if you love someone and can manage your life with them, it's important to consider how that'll play out with even a little bit more pressure placed on a situation that thrives on stability. Kids are not a little bit of pressure, and if there's a possibility their mother (or adopted mother) will disappear for periods of time unpredictably, it would make an already extremely demanding obligation that much more tenuous.

Big Pharma doesn't want you to know this /j

> Kids are probably not an option. Although she very much wants it.

Like many (but not all) people, my bias is love of children. But extend that love to your dearest future hopes. A marriage will be a serious test of commitment and stable teamwork every day — for decades. Otherwise it is likely to crumble and the children will be victims too.

Even as an optimist, I will say to a HN brother... there are short hikes, but for the longest you choose your ascent, your kit, and the weather conditions.

First, I’m sorry if there’s any typos I am doing speech to text on my iPhone writing this and it’s early in the morning.

There are many psychiatrist that have different viewpoints, for example I’ve talked to many who see purines as a problem and then you have the whole keto/mitochondrial doctors. There are many psychiatrist that will never change their minds about mood disorders because why do they have to?

I should add as well that there are so many things out of my control that are triggers that I still carry Klonopin with me just in case. It’s the one thing that can stop my psychosis in a heartbeat. I think the glutamate GABA balance is extremely important and unlooked with a lot of mental illnesses. Glutamate are a big trigger for my psychosis.

To me, and I think this can be true for anyone, it’s all about connecting the dots between the triggers and not only mood symptoms, but physical symptoms as well. But obtaining my genetics and also learning about genetics over a 10 year period helped me tremendously. I knew it was in my family because my mother, my brother and my nephew, including myself all had extremely similar experiences and also suicide attempts.

The first thing is, I could not have done this if I did not stop my medication. I’m not recommending anyone stop their medication‘s but it’s going to be really hard to find things that affect glutamate, dopamine and serotonin if you’re taking these drugs at the same time. But being on the same drugs my mother was o 50 years ago did not seem logical to me. And then I started hearing stories about people recovering from mental illness, real stories. Then my nephew hung himself at 13 and that changed everything. I knew it was genetic so I knew that’s the direction I had to go to investigate what was going on with my family.

So I got to know my mother side of the family a bit better both genetically and from stories. It definitely came from my great great grandmother side and it turns out while we all thought that side of the family was Polish, they were actually from Finland.

For myself, my gut was a big indicator and clue. I’ve had IBS-D really bad since I was a child. I managed on my own to find foods that were triggers, but it was not until I discovered I was a FUT-2 non-secretor that thing is really changed. Only 20% of Europeans carry this gene so I knew it was important

https://pmc.ncbi.nlm.nih.gov/articles/PMC9301175/

Eating a diet heavy in Fucose (not fructose!) fixed my gut. Seaweed, mushrooms, etc.

This was not a cause of my schizoaffective disorder, but it definitely was a trigger. When my gut was bad, I was bad. But there were a lot of times when my gut was good and I was bad as well. So I kept looking for triggers.

Then there was the early heart attacks in my family and my hyperlipidemia. In my genetics, I saw that I had genes that were more like people who were the Inuit when it comes to poly unsaturated fatty acids. At this time, I was a vegetarian. With all the research about how omega-3 helps with heart disease I decided to eat more like an Inuit and what do you know, my cholesterol totally reversed. LDL down and HDL from 30 up to 54. Plus, I was feeling much more stable. Don’t underestimate how omega-3 can control receptor function.

Both my mother and I also had what is called multiple chemical sensitivity. I don’t really like that name but that’s what I’m left with. It’s essentially a sensitivity to a lot of aldehydes. The story here is kind of long and complicated so I’m not gonna go too much into the genetic details but I’m just showing you another of several triggers that helped me find out what was going on. A lot of foods have aldehydes, aldehydes impact flavor of foods and food manufacturers add aldehydes to foods as well as add glutamate and purines to increase our taste but sensitivity to flavors.

And then we could talk about air pollution. Another big trigger. My grandparents lived in Manhattan and every time we went back there I would feel worse. I even tried to work in Manhattan for a year and that did not end well.

Alcohol is complicated. At the front end, it brings me really really big relief. But I could never drink too much because it gave me a really bad fatigue in the end. It turns out that the calcium ion channel blocking effects of alcohol are great, but the aldehydes alcohol creates just make me feel worse in the end.

So I just started avoiding those foods and eating Whole Foods that are people in a cold climate would eat, and they went away a bunch of more of my triggers.

And then there was heat. Heat is the number one trigger for me. And for some stupid reason, I moved to North Carolina. Since I ended up homeless because of this and living in a van, I was able to move to different climates to different places and also found not only the cold weather, but high altitude were triggers.

see the problem with all this is my mother married an Italian man. So instead of eating a more Polish/Finnish diet we were eating in Italian diet having a carbohydrates and red meats and little fish. This was the worst diet for me.

I do take some supplements and two supplements. I’ve been tested deficient in, and that helped me are zinc and B6. When I say these supplements help me, I mean they dramatically make me feel different when I’m am low I them and when I supplement with them. And magnesium is another one.

So now I try to live like a Sami. I ate a lot of seafood, salmon, mackerel, oysters, mussels and wild game meets. I say low latitudes in cold climates. And I also avoid polluted cities.

Now that’s gonna sound depressing because I know that not everyone can do what I did, live in an van and move somewhere that fits them genetically. But that’s the truth of the matter. In my humble opinion, they have the idea of mental illness all wrong. It is a disease more like an allergy than a mental illness. There is an environmental trigger that causes a reaction. And make no mistake I think for the majority of us, including myself, it is an immune disorder and not a nervous system disorder in a fundamental way. For example, I’ve had very low white blood cell counts, but also showed signs of lupus that they were always testing me for. They also kept testing me for HIV because of my symptoms in white blood cell counts.

And then the doozy was when I had COVID-19. Both times I caught it I had the worst psychosis in my life. For some reason, no one finds this interesting not even my doctors.

Edited to add

I want to add this in a shorter post cause I can’t believe I didn’t bring it up.

The first thing I would do was get all of her nutrition levels, tested, and ruled out as causes. There are several tests you can get without a prescription.

The first important one is a hair mineral test. But getting a full iron panel, zinc, B6, homocysteine, B12, methyl malonic acid, serum amino acid test, and of course, a complete CBC with differential and metabolic panel. Keeping track of the last two were really important for me. I noticed my white blood cell count changed when I was in different locations. For example, my white blood cell count was consistently higher in North Carolina than it was when I was in Washington state.

As an example, I had a friend who was on Prozac since she was 18 and she was now 48. I looked at her blood test and it was clear she had anemia. They did an iron panel and her serum ferritin was only three. It turned out they were treating her lifelong anemia with SNRI’s and antipsychotics.

She will break down, then she'll get strong meds and she'll change unrecognizably. Think twice before making a long relationship with this person. You'll get a lot of stress and eventually she'll change drastically.

Schizophrenia has a strong genetic component, so think twice about making a children as well.

That sounds like my mother (except for the "90% of the time" comment). I can tell you from experience it would be a bad idea to have kids, even adopting.

Please don't downvote or flag this person unless you have a family member (or better, family members) with schizophrenia.

Thank you so much for writing this.

The thing about treating it all as some sort of an allergy makes sense for me since connecting some ideas from Gabor Mate about the immune system.

And the covid triggering a phychosis like state rings true for me as well (not that I need to corroborate what you are saying, once you know you know). One of the worst trips I've had was "just" having covid during the summer.

You're welcome.

Yes, people underestimate how stress effects the immune system and why it is so hard for people to see this link even when they can become fatigued, depressed and irritable when they have a cold.

They have investigated me for some sort of primary immune deficiency and found low T cells but they said they were "not low enough to cause problems".

When I had COVID I was running around this small town hiding from people and taking pictures of the, texting them to my friend as evidence they were following me and spying on me, and picture of my van and how people were messing with it. They I thought she and her family were in on the conspiracy. She finally convinced me to take a klonopin and I came out of it enough to take some more and it was done. The next day I had a fever and COVID. So it was weird that both time sit preceded my physical illness.

Sending love to you and your partner and hoping she can stay curious about why she is ill.

> If she has triggers, that means she does not have a disease , it means she’s a different person that sensitive to different things

This is not the medical consensus. Schizophrenia, along with many other mental disorders, are well known to have a complex interplay with not only background genetic/chemical factors, but also the psychological conditions of the patient -- stressors like homelessness, drug use, and lack of sleep very much can trigger psychotic episodes. Suggesting otherwise is to suggest that a sick person not get care that they very well may need.

This is a shot in the dark, but there is a lot of excitement right now about treating schizophrenia and bipolar disorder as a metabolic issue. Some people are seeing complete remission, without medication. This isn’t a quick easy recommendation to just go off meds and go keto, but for some people that apparently has worked. Chris Palmer M.D.[0] is one of the main people driving it.

[0] https://www.chrispalmermd.com/chris-palmer/

I lost my brother to suicide in a similar situation. Thanks for writing this and I hope it helps others stuck on the med treadmill.

Is there a reason to go off the meds when starting keto? If the meds are only mostly effective, and then a keto diet makes them very effective, then I might be inclined to go off the meds – but only if it stacks like that.

Did you just suggest that hormones don’t play a roll in mental health?

> homelessness, drug use, and lack of sleep very much can trigger psychotic episodes.

Yes, I don’t understand your disagreement, that’s the point I was making. That for some of us these things will cause schizophrenia for others. Maybe some other illness like lupus. The problem isn’t the gene. The problem is the environment. If you’re not homeless, don’t use drugs and get good sleep And you don’t get schizophrenia, an we say schizophrenia is a disease? Or is it a symptom of environment that is not fitting for the individual?

And in fact, schizophrenia is not a disease, it’s classified as a disorder.

I have family with diagnosis. I upvoted the comment.

Disappearing unpredictably is one of the less harmful ways it might show up. Imagine having a parent who you literally cannot trust to recognize how to care for you. My aunt is schizophrenic and was not diagnosed until late (as seems to be common, she moved away from family and friends to get away from interference). Her kids were 13 through 5 when she was diagnosed and had serious trauma.

The disease or disorder is always present, the symptoms can come and go. Someone allergic to peanuts is allergic to peanuts whether or not they have eaten some this week.

But you see I only care about the symptoms. And the symptoms are used to classify disorders. No symptoms, no disorder.

You can carry all these jeans and not be exposed to any trigger and would never know you had the disorder so can you call it disorder if you have zero symptoms?

Yep, I have an older friend who'd grown up with a schizophrenic mother who he's had lifelong trauma from. It's a bit horrifying. Incidentally it seems like the genx and beyond in my life never grew up with a framework for either identifying or addressing even something as common as clinical depression or ADHD, let alone the more potentially externally destructive ones like borderline, bipolar, schizophrenia. Seemed like they carried on to raise their kids with a sort of hope that if they ignore it, it'll eventually go away.

Yes, actually, you can. Feel free to call yourself allergy free and stop carrying an epipen though.

> She will break down, then she'll get strong meds and she'll change unrecognizably. Think twice before making a long relationship with this person.

Isn't this risk mitigated if the respective person is (also) an anti-psychiatry activist? ;-)

Doctors prescribe meds for a reason. Schizophrenia is not a funny thing. Person with voices in the head, can hurt or kill, themselves or someone. It's a choice between two evils. My spouse has these issues, and it was much worse for me, when she resisted to take a treatment. And treatment eventually changed her, so it's very terrible thing that I wouldn't recommend someone to experience voluntarily.

> Schizophrenia is not a funny thing. Person with voices in the head, can hurt or kill, themselves or someone.

I know people with schizophrenia (both treated and untreated), but I really seem to be the kind of person who seems to have much less problems getting along with schizophrenic people than what is common in society.

If you ask me: a lot of "weird" stuff that I read on the internet over the decades is magnitudes more "weird" than what most schizophrenic people do - so by being an avid internet users for decades, what many people consider to be "repulsive" in schizophrenic people is just "normal variance" to me. Honestly, I often find "well-adjusted", conformist people to be much more repulsive and annoying than what I experienced with schizophrenic people.

Update: If someone told me they hear voices in their head, I'd rather be the kind of person who curiously asks for details, and will attempt to do some scientific investigations (e.g. about the personality traits or "true" intentions of the voices that the respective person hears). :-) :-)

The original article does point out the polygenic nature of the disease.

Currently dealing with a schizophrenic brother-in-law randomly calling for the death of his wife. They have a 2-year-old. I have high hopes for her though, but not for the ability for HN commenters to be able to make empathetic comments instead of random barking.

thank you for writing this out , im sure r/antipsychiatry would genuinely appreciate a copy paste of this comment