Family and Caregiver Schizophrenia Discussion Forum

"disorganized" type of sz , more negative symptoms, questioning diagnosis


#1

I am wondering if there are others with loved ones who have been diagnosed with schizophrenia who have mostly negative symptoms and not the positive symptoms of voices and hallucinations. My son had initially drug induced psychosis from pot, mushrooms and whatever else, Early on he had delusions, paranoia, philosophizing, but not voices and hallucinations, He had more of the negative symptoms of impaired cognition and disorganization but he still got the diagnosis of schizophrenia. After jail episode and 2 hospitalizations he was put on lowest monthly injection of Invega sustena and psychosis symptoms have been fairly well managed. Unfortunately the symptoms increase when smoking pot or using any other drugs. I have not been able to have him see the need for addiction treatment. I feel we are fortunate that it was caught early – and my heart goes out the those families dealing with more serious positive symptoms. His disorganized version of sz and negative symptoms continue to impair his functioning. Is this milder substance induced schizophrenia common? Do others have difficulty with the cannabis and other drug use? I have asked psychiatrist to do reevaluation of the diagnosis because he doesnt have voices – his repsonse was it doesnt matter if its really substance induced psychosis or sz the treatment is the same. I feel it does matter to know- thoughts?


#2

my schizophrenia started with drug use
i smoked pot for about a year or two every few days as well as other drugs
the times after i started psychosis at all - every time i smoked i would get paranoia for the rest of the day
this schizophrnenia at second opinion was diagnosed as paranoid and drug related onset.
this has been a typical course of the illness remmiting and worsening each episode before finding the right medication and a loving marriage
diagnosed in 1994 straight away at diagnosis paranoid sz because i had been paranoid and hearing voices every day for 6 months
please ask anything you would like to know
if his drug use causes psychosis it should not take him long to draw a conclusion about what causes it to get worse*
he might just not be able to stop easily.
if he hears it from a professional it might make it even more clear if you can get him to talk about it with his psychiatrist ?

*providing it is not daily use


#3

I did go to rehab privately after seeing my also schizophrenic sister as i thought as a teenager - that she was getting broken down so that she could be built back up

i think teenage and early twenties minds work differently !!

my mum went to a few family AA *aka Al-anon or an NA families group
it gave my sis a shock to hear it
if he hears from you after a few weeks that that is where you have been going he might have a surprise

I wish you and him the best

i do have a second sister who is severely unwell. She has been alcoholic for her whole life and is now in a 5 yr long crisis including abuse and spiritually odd ideas
i sometimes wonder if she has a ‘mild’ schizophrenia. although functioning is impaired with sz, i still got 2 C’s at A’level and was unwell most of the second year.

so yes i find prodromal phases could be long and less severe


#4

Three: Thank you so much for reading my post and thank you for sharing some of your experiences. It sounds like you have a lot of insight and are managing better and better. The fact that you went to rehab of your own choice, shows great effort and insight to be well. Bravo for your great recovery work. I am sorry to hear of the challenges with your sister.
I am realizing my post was complicated (written late at night while I was stressed) It is really 2 separate topics. I will separate out the addiction topic to another post and keep this string to the topic more negative (than positive) symptoms and questioning diagnosis.
a) Do other families have loved ones who have the diagnosis of SZ yet actually exhibit only the negative symptoms? In other words, have no voices or hallucinations, however do have significant negative symptoms: disorganized thoughts, amotivation, trouble with skills of daily living?
b) If your loved one does not have voices, have you asked for and obtained a revaluation of the diagnosis?
When I have asked my sons psychiatrist to do a re-evaluation of diagnosis he refused because he says medication treatment would be the same either way. I feel this ignores the clients rights and also ignores the impact that a correct diagnosis can have on recovery. clients will naturally so some self-assessments and judgements based on the diagnostic label and so this can affect their motivation and their recovery trajectory. If one has a physical disorder, say cancer, we wouldn’t think it is ok to be told it doesn’t matter which cancer diagnosis you have because we are going to treat it the same?


#5

Hi , my son was diagnosed with drug induced psychosis and now schizophrenia and i was told the same ,that it doesn’t matter and we need to deal with the symptoms . This all happened less the two years ago and in the last year he has developed somatic symptoms believing that he can not have kids and that his testicles are tiny when there is nothing wrong with him , he has been to more than a dozen urologists and doctors and still he is convinced and distraught. I am waiting for his new meds to kick in . Everyone with schizophrenia has different symptoms but similar if that makes sense .


#6

Hi again three… so glad you found a happy marriage. That connection is so important and I know my son is very motivated to have a girlfriend. Sadly,he recently finally agreed (after my encouraging it for 8 years!) to go to addiction recovery (dual diagnosis) and then he was approached by a girl on a dating site who was homeless and pregnant and wanted my son to move in with her and her mother. She TALKED HIM OUT OF REHAB!! Now he wont go, so I am dealing with his substance use and the impacts in my home.
Reply to your comments….

  1. Yes in the 20’s there is not a lot of insight. My son’s psychiatrist said do not expect much insight before age 25. This is so disheartening because continuing substance use is making the SZ illness worse.

  2. I have for all these 8 years he has been using substances, accessed help on and off through Nar Anon and several other kinds of supports around addiction.
    You make a good point – I am going to recommit more visibly and rigorously to Nar anon and my own recovery and this may inspire him.

  3. He has been hearing that he needs substance treatment from his psychiatrist and caseworker and myself, however he still does not want to go away to a treatment center. Partly he is ambivalent as so many mainstream people smoke cannabis (and it is safe and effective for some people and conditions) – he finds if hard to see that it is not good for his condition. He has gone to day treatment programs . He thinks smoking pot helps him stay off cocaine and that could be so, but when he has disability income he relapses . I have done some trials with him to use only cannabis with CBD only, with not much success so far. He has racked up debts, stolen from me, taken car without permission etc. I have loaned him money for his tobacco habit when he runs out. I do not intend to put him on the street which is the tough love/NA approach due to his vulnerability with thought disorder. Getting him safe affordable housing is my aim. Very difficult where I live not a lot of affordable housing.


#7

Hi Linda, I think I see what you are saying that they each have very different symptoms (maybe overt positive, maybe negative) but there is the similarity of there really is a "thought"disorder going on in the brain. So in your and my kids cases, the drug induced psychosis progressed to schizophrenia. Sorry you are going through this … .hope the meds are going to work for him. the injection version (Invega Sustena) was a lifesaver for my son’s case as he wouldn’t take the oral meds. Has he stopped using street drugs?


#8

My son has stopped using street drugs long time ago but refuses any injection meds as he believed they poisoned him , thankful that he is oral meds .Horrible disease! one day at a time . sorry you are going through this too , hang in there .


#9

Thank you for your words

I know that my sister has no voices
i believe that both my sister (believing all the trippy stuff that is not real) and having negative symptoms - hardly ever leaving a darkened room
i put it down to drug related but that only works up to a point.

i believe she was spiked and raped and it has sent her crazy with a lot of bullying on line

but i say this because i truly think she has addiction and mental illness
and this is what differentiates it
i also don’t get it
It is good to hear that your son has medication i hope he continues to take advice. my sister now has a barristers decision that she is not fit to stand trial in crown court and will now see her first doctor in 5 yrs

I do understand what you mean
is he coherent?
is he secretive with his beliefs most of the time (drops hints)?
my sis has gone from angry to pretty chilled she uses weed to combat the insanity of alcohol

I have often wondered what you say - i do not know if there is a mild form of schizophrenia with delusions but the ability to somehow stay the right side of acute and florid psychotic episode
i am amazed to be honest to hear you ask is there mild sz?
that is what i have been puzzling about for about a year since she let me in on her beliefs


#10

i did not really have motivation to improve my life a bit more till mid twenties
i went to a buddhist meditation centre for 6 weeks
they allow a lot of long term help (self time / community time) to people who have non acute problems
although you can be sent home it is only if you are too unwell
and it is no hard feelings
done so much in this vein all my life
i say it as a possibility for your son if he would ever be interested (i don’t know if you have a faith - sorry)
the drugs will always make everything much worse
if he would just go to one taiji set of evening classes it might do something
for me it took little more than that to set the course of my recovery and independence and happiness going

although i have had a 14 yr relapse and great marriage with a non drinker

I can’t believe the girl saying that
I’m sorry to hear
Just keep on at him? i don’t know - lay in place what you can.
you sound like an amazing caring mother and person.
my sister has made a long slow burning psychosis and her bedroom her home for 5 years
she has been trying to get her life back which mostly involved relocating but drink always wins and ruins

I await any responses to this thread
it really amazes me that your thread is what is going on in my family
i can’t tell you how good it is and how awful that someone is going through such a similar situation

it feels like a slow burning schizophrenia
i dont know if it is possible to be prodromal for 5 years


#11

Hallucinations cause people to hear or see things that are not there. Approximately three-fourths of individuals with schizophrenia will hear voices (auditory hallucinations) at some time during their illness. Disorganized Symptoms: Disorganized thinking, speech, and behavior affect most people with this illness.10 Oct 2016

this is what i just found - it seems to say you can be schizophrenic with no voices
hallucinations might be not much more than a visualisation which, if one were not well we would just keep that kind of thing to ourselves.!!

i have always put the differences down to a drug induced stupor basically but with nothing massively frighteningly acute like with our other sister and me


#12

Thanks Linda,
It is awesome and provides hope to hear that your son was somehow motivated to stop using drugs, (that may have triggered the illness) Do you know how/why he became motivated to stop?

I hope his meds begin to work well very soon. : ) stay well


#13

Hi three… what a hugely challenging situation with your sister. It must be hard for you and your wife to witness and be supportive. What you describe is happening with barrister now seems a positive step, because, if I understand, she will be forced to see a doctor. Perhaps she will finally get the medical help it sounds like she needs. She could be experiencing PTSD from the trauma of the sexual assault,

I imagine that yes she has been self-medicating with cannabis to deal with alcohol and psychosis symptoms. As you know, unfortunately, both substances are a chemical soup for the brain that has been worsening her symptoms. Hoping for the best…


#15

Three – thanks for the kind words… we moms do our best… its a learning journey and I have my own recovery work to be done, Yes – agree and I like the idea of seeing him find his way to some form of spiritual practices or philosophy – whether meditation yoga, tai chi. He used to do martial arts. Send link to the buddhist retreat if you have it please. Just saw a site called Refuge, buddhist approach to addiction, on line and in person.

TO THE SITE READERS/ I apologize as I am technologically inept. Got a notice from admin saying to try not to post several short posts but to copy quotes and reply in longer posts. I dont really understand, but I will try to learn to do this right and aplogize for posting in a confusing way, if I did.


#16

I believe it was a combination of getting in trouble with the law , his paranoia making him believe the drugs will enhance the somatic symptoms he believes he has (and me praying for him lol )


#17

not at all confusing
i think that is an automated message
i’ve had it before, no problems :slight_smile:


#18

the retreat i have been on is in the uk near Totnes in Ashprington

It’s called the barn and it’s part of a place called Sharpham Estate

if you have a look there are many other places similar… look at the program and see if anything compares near where you are.

it’s very healing to do the work on the land and away from traffic and screens
these days it is a 6 night retreat and if you wanted to book for a series of weeks - get in touch with them
i only do one week at a time these days but once a year lately

here’s the link:

also i’m a 44 yr old woman :slightly_smiling_face:


#19

We hope it’s a positive step and forced treatment of some kind
there is a place in the uk which deals with trauma and the effects of it inc drugs and alcohol
it is theoretically possible for it to be state funded or a loan taken out


#20

Hi, I just read this list of symptoms of sz on facebook and thought it was pretty accurate:

"Schizophrenia Symptoms:

Examples of Physical Symptoms----

–A blank, vacant facial expression. An inability to smile or express emotion through the face is so characteristic of the disease that it was given the name of affective flattening or a blunt affect.
–Overly acute senses- lights are too bright, sounds are too loud.
–Staring, while in deep thought, with infrequent blinking.
–Clumsy, inexact motor skills
–Sleep disturbances- insomnia or excessive sleeping
–Involuntary movements of the tongue or mouth (facial dyskinesias). Grimacing at the corners of the mouth with the facial muscles, or odd movements with the tongue.
–Parkinsonian type symptoms- rigidity, tremor, jerking arm movements, or involuntary movements of the limbs
–An awkward gait (how you walk)
–Eye movements- difficulty focusing on slow moving objects
–Unusual gestures or postures
–Movement is speeded up- i.e. constant pacing
–Movement is slowed down- staying in bed (in extreme cases, catatonia)

Examples of Feelings/Emotions----

–The inability to experience joy or pleasure from activities (called anhedonia)
–Sometimes feeling nothing at all
–Appearing desireless- seeking nothing, wanting nothing
–Feeling indifferent to important events
–Feeling detached from your own body (depersonalization)
–Hypersensitivity to criticism, insults, or hurt feelings

Examples of Mood----

–Sudden irritability, anger, hostility, suspiciousness, resentment
–Depression- feeling discouraged and hopeless about the future
–Low motivation, energy, and little or no enthusiasm
–Suicidal thoughts or suicidal ideation
–Rapidly changing mood- from happy to sad to angry for no apparent reason (called labile mood)
–Severe Anxiety

Changes in Behavior associated with schizophrenia ----

–Dropping out of activities and life in general
–Inability to form or keep relationships
–Social isolation- few close friends if any. Little interaction outside of immediate family.
–Increased withdrawal, spending most of the days alone.
–Becoming lost in thoughts and not wanting to be disturbed with human contact
–Neglect in self-care- i.e. hygiene, clothing, or appearance
–Replaying or rehearsing conversations out loud- i.e. talking to yourself (very common sign)
–Finding it difficult to deal with stressful situations
–Inability to cope with minor problems
–Lack of goal-directed behavior. Not being able to engage in purposeful activity
–Functional impairment in interpersonal relationships, work, education, or self-care
–Deterioration of academic or job-related performance
–Inappropriate responses- laughing or smiling when talking of a sad event, making irrational statements.
–Catatonia- staying in the same rigid position for hours, as if in a daze.
–Intense and excessive preoccupation with religion or spirituality
–Drug or alcohol abuse
–Smoke or have the desire to want to smoke (70-90% do smoke) - note: this is a very normal behavior for people who do not have schizophrenia also!
–Frequent moves, trips, or walks that lead nowhere

Examples of Cognitive Problems Associated with Schizophrenia ----

–Ruminating thoughts- these are the same thoughts that go around and round your head but get you nowhere. Often about past disappointments, missed opportunities, failed relationships.
–Making up new words (neologisms)
–Becoming incoherent or stringing unrelated words together (word salad)
–Frequent loose association of thoughts or speech- when one thought does not logically relate to the next. For example, “I need to go to the store to buy some band-aids. I read an article about how expensive AIDS drugs are. People take too many street drugs. The streets should be clean from the rain today, etc” The need to go to the store to buy band-aids is forgotten.
–Directionless- lack goals, or the ability to set and achieve goals
–Lack of insight (called anosognosia). Those who are developing schizophrenia are unaware that they are becoming sick. The part of their brain that should recognize that something is wrong is damaged by the disease.
–Racing thoughts
–In conversation you tend to say very little (called poverty of speech or alogia)
–Suddenly halting speech in the middle of a sentence (thought blocking)

–Trouble with social cues- i.e. not being able to interpret body language, eye contact, voice tone, and gestures appropriately. --Often not responding appropriately and thus coming off as cold, distant, or detached.
–Difficulty expressing thoughts verbally. Or not having much to say about anything.
–Speaking in an abstract or tangential way. Odd use of words or language structure
–Difficulty focusing attention and engaging in goal directed behavior
–Poor concentration/ memory. Forgetfulness
–Nonsensical logic
–Difficulty understanding simple things
–Thoughts, behavior, and actions are not integrated
–Obsessive compulsive tendencies- with thoughts or actions
–Thought insertion/ withdrawal- thoughts are put it or taken away without a conscious effort
–Conversations that seem deep, but are not logical or coherent

Examples of Delusions----

The most common type of delusion or false beliefs are paranoid delusions. These are persecutory in nature and take many forms:

–Overpowering, intense feeling that people are talking about you, looking at you
–Overpowering, intense feeling you are being watched, followed, and spied on (tracking devices, implants, hidden cameras)
–Thinking that someone is trying to poison your food
–Thinking people are working together to harass you
–Thinking that something is controlling you- i.e. an electronic implant
–Thinking that people can read your mind/ or control your thoughts
–Thinking that your thoughts are being broadcast over the radio or tv
–Delusions of reference- thinking that random events convey a special meaning to you. An example is that a newspaper headline or a license plate has a hidden meaning for you to figure out. That they are signs trying to tell you something.
–Religious delusions- that you are Jesus, God, a prophet, or the antichrist.
–Delusions of grandeur- the belief that you have an important mission, special purpose, or are an unrecognized genius, or famous person.
–Delusions that someone, often a famous person, is in love with you when in reality they aren’t. Also called erotomania or de Clerembault syndrome.

Examples of Hallucinations----

–Hallucinations are as real as any other experience to the person with schizophrenia. As many as 70% hear voices, while a lesser number have visual hallucinations.
–Auditory hallucinations can be either inside the person’s head or externally. When external, they sound as real as an actual voice. Sometimes they come from no apparent source, other times they come from real people who don’t actually say anything, other times a person will hallucinate sounds.
–When people hear voices inside their heads, it is as if their inner thoughts are no longer alone. The new voices can talk to each other, talk to themselves, or comment on the person’s actions. The majority of the time the voices are negative.
–Visual hallucinations operate on a spectrum. They start with the overacuteness of the senses, then in the middle are illusions, and on the far end are actual hallucinations.

Disclaimer: The above symptoms overlap with many other diseases such as bipolar disorder, major depression, the various kinds of personality disorders (specifically paranoid and schizotypal personality disorders), and other problems such as brain tumors and temporal lobe epilepsy. There is no “typical” case of schizophrenia. Everyone has different symptoms. Seek the opinion of your doctor always.
Moreover, it is always important to keep the big picture in mind. Having just a few of these symptoms does not necessarily mean that a person has schizophrenia, or any other sort of psychiatric disorder. Almost all of the signs below can be present to a “normal” degree in people; it is when someone displays them to a significant degree that they can become psychiatric symptoms. Think if all of these behaviors as being on a continuum, in which the middle 99% of people displaying varying degrees of the behavior, but are still within the “normal” range. The 1% of people on the outer edges have the behaviors in extreme proportion, and/or a significant proportion of the time, and that is when they can become debilitating.
A diagnosis of schizophrenia requires that continuous disturbance (i.e. debilitating symptoms) be present for at least six months, including at least one month of certain key symptoms (active symptoms: delusions, hallucinations, disorganized speech, disorganized/catatonic behavior, negative symptoms such as severe emotional flatness or apathy)" [Copied and pasted from a Facebook post]


#21

I think my sister has this…
there is just too much about this list of symptoms - not really all of it can be attributed to chronic alcohol misuse
later onset but our middle sister and I were and are also schizophrenic.