Family and Caregiver Schizophrenia Discussion Forum

My sister wants to get off her meds

Hi all,
My sister suffers from the side effects of the antipsychotic meds she takes. She doesn’t go to the toilet as often as expected - that’s her major concern… as a result she’s become very strict with her diet, avoiding food due to the fear that all the food she consumes will eventually turn into fat. She had a phase when she claimed that she couldn’t pee and started drinking less. More recently, she’s started claiming that she couldn’t breathe - and by that she meant that she couldn’t feel the flow of air inside her nostrils (we even went to the doctor - he said it was an obsessive thought and that nothing was wrong with her physically). The latest complaint she has most resembles Micropsia - she says that letters appear smaller to her. She’s terrified that she might lose her vision. It seems to us that she deliberately checks off all the side effects listed on her medication - movig from one to the other…
She is very persistent and begs to stop the intake of her pills. She’d had 3 psychotic breakdowns before, 2 of which were after an abrupt cessation of medication intake.
What’s your advice?

Has she considered taking injectable meds once a month ? maybe that way she won’t obsess every day when she takes her pills

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Hi Dan,
Welcome to the forum, I hope you find some insight here.
If your sister was not acting like this before, it might be a good idea to take her to her physician, and discuss her obsessions, make sure the meds are working or maybe need adjusting.
It took me a long time to realize, that my mom’s obessions were actually delusions. As she aged the delusions became hallucinations and we’re easier to identify.
Take care, hope this helped, Annie

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Oh I didn’t know obsessions and delusions are the same thing …

They aren’t. There are differences. Obsessions are persistent thoughts. Delusions are persistent beliefs that are generally thought to be untrue and do not respond to rational arguments. There’s a cultural component to delusions to allow for accepted religious beliefs and culturally appropriate myths like Santa Claus. Hallucinations are different as well, these are false perceptions without stimulus.

I could have persistent thoughts about Justin Bieber for example. I might be obsessed with getting a ticket to a concert of his, so I could see him in concert and go to great lengths or expense to make it happen. Or I could have a persistent belief that he was my brother, and he’s not, so this is a delusion. I might not mention this belief or think about it unless someone mentions his name, so this wouldn’t necessarily be an obsession. Or I might hear his voice calling to me calling me baby when he’s nowhere near me, and that would be a hallucination unless the radio is playing.

I know this can be confusing, as most people only experience these things as fleeting moments. Many times people with SZ obsess about delusions when ill and delusions may arise from hallucinations, but not necessarily. These can all be separate things and I’ve experienced all of them separately.

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yeah! @Maggotbrane
I appreciate your on point description
I think you made it very clear here!
Thumbs up

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Welcome to the forum @Dan1 . There is no easy answer for you, I’m afraid. Best is to read as much as you can on this forum for how others have handled their loved one’s delusions and hallucinations and wanting off of medication. Seeing, hearing or feeling things that aren’t there (like breathing problems that aren’t there, but seem real) or persistent ideas that aren’t correct (delusions) can’t just “go away” for your sister, she feels these things.

When a medication didn’t work for my daughter, her delusions and hallucinations were daily occurrences, or only partially were handled by the med. It took 5 hospitalizations, and 5 different drugs to find one that worked. It was like a miracle though, the medicine that worked changed so much. She takes a monthly shot now (Haldol dec shot), not because she thinks she needs it, but because she was forced onto it by a judge and it became a habit she no longer questions. She had lots of delusions about food, what she could and couldn’t eat and drink when experiencing psychosis for 2.5 years. Most of her hallucinations and delusions are gone or are “quiet” now. Before they ran her life (and mine, as her caregiver).

I wish you the best in trying to find answers for your sister.

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Thank you all for the replies (it’s meant for everyone who gave their input). It seems like we succeeded in getting the point across to her… we made it clear how dangerous it is to get off the meds - explained that the problem we’re dealing with is schizophrenia and not the pills.
However, all the side effects she enlisted, some of which may appear exaggerated do have proof. For instance I did see that her hair began falling… besides the mental health which is of course the major priority - these side effects also bring a lot of anxiety to her and affect her.
The psychiatrist says that the pills she takes now have the least side effects and the doze is very small. Do you have any opinion about how to deal with the side effects? Are there any meds that you know of that do not have such an influence on the body?

Hiya Dan,
This sounds a lot like my own sister. My sister was vain before her diagnosis but it’s gotten worse. Putting on weight is one of the main reasons why she continually messes about with the dosage of her medication. And with this constant lowering of her dose inevitably comes the psychotic episodes. She attacked me again before Christmas because I stood up to her and told her that I couldn’t take her constantly criticising me. She ran at me and started beating me over the head.
One thing I don’t get is, if she’s supposed to be so ill, why is she lucid enough to care so much about her weight and appearance? I firmly believe and will continue to believe that those who are diagnosed with schizophrenia are really people who are evil and who can’t help doing evil to those around them. I’m sorry if this causes offence to the families of people with schizophrenia but after having seen my sister and reading so many posts here, I don’t think it’s a “mental illness” per say; I think these people are so evil and so intent on getting their own way that they’ll stop at nothing to get it, even if they have to kill people to get it. Perhaps this is just my sister.

@Dan1 can you share the medication, dosage and side-effects in question (other than hair loss)? It’s hard to answer your questions or comment, as there’s a broad range of medications and effectiveness and side-effects vary from person to person. There are also some psychological/psychiatric aspects to the perception of side-effects which from my experience psychiatrists don’t always grasp.

You mention pills. Has the psychiatrist considered long lasting injectables? I’ve never taken them, but I understand they help with more consistent dosage compliance.

Hi,
I’m very sorry to hear about your hard experience. I can’t imagine how difficult it must’ve been for you. The illness manifests itself in various ways. Some become violent, others become unresponsive.
My sister had never been vain. She has 2 university degrees and had been very much normal before the initial episode. In the beginning we also thought that her behavior was controlled by her and that she had an ulterior motives… it took us a long time to fully grasp what the problem’s been. I was present when she had those jumbled up thoughts, those crazy desires and beliefs- I knew that nothing could be played that well, especially not by my dear sister.

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I don’t take offense but my perspective is a bit different.

I do believe that there are “evil” people in the world (by which I mean people completely or almost completely lacking in empathy for others). Like everything else, this is probably due to the combination of genetics and environment. And a few of these people will go on to develop symptoms of schizophrenia.

My husband, who has schizophrenia, is a decent and thoughtful man when not symptomatic. When symptomatic, he frequently is angry and hostile but in ways that make total sense given his perceptions. If I were having his experiences, I would feel the same.

My sister, who also has schizophrenia, is narcissistic, entitled and manipulative. She was narcissistic, entitled and manipulative before she developed symptoms of thought disorder and she has remained this way since the onset of her illness. I love her very much, but I prefer to love her at a distance.

Your situation sounds very, very challenging. I hope you are able to figure out a way to stay safe.

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This is the “villagers with pitchforks” mentality that makes our family members with scz ending up being victims more often than they create victims.

Having an older sister with bipolar, I know firsthand that sisters with brain disorders can make us so angry we can get a little carried away in our thoughts about them. There have been lots of times I was pretty sure my sister is pure evil. Some of my friends have the same thoughts about their sisters- even if their sisters are normies. :smile:

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My son cares how his hair looks , shaves , and cares how he dresses , but doesnt seem to care to much if his clothes are clean . Even though he has a MI i still see glimpses of who he was . He had side effects of anxiety from his meds and we lowered the dosage slightly which helped .its not easy getting the meds right . we are still working on it .