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People have a level of tolerance. And that level can be reached. Then relationship starts to break down. Medication is very important however when non compliancy is present it can be wear the carer down. As you have to be vigilant Around there behaviour. When you get older it's harder to tolerate. At some point the care giver has to think of their own well being when toleration limit has been reached.
@@hilaryadele662 In that case, it is best for the person not to have hopes of a long term relationship. A short loving relationship for both people is all that can be expected until either a cure is eventually found for the voices and/or hallucinations or better medications are created to produce near normal pre mental illness behavior or more tolerable side effects. Antipsychotics have some heavy duty side effects. Metabolic problems which can effect weight and lead to diabetes, involuntary muscle movements, slow thinking , tiredness, exhaustion, kidney disease, cancer and a potential lost of their former spontaneous, fun loving personality traits.
@@hilaryadele662 But of course having a mental health disorder can cause a lost of being spontaneous and can being quite numbing for the person affected. I give all due respect to the caretaker it is hard to be there for a sick individual. You look at them physically and think nothing is wrong with them, but don't realize that s/he has something going on internally ( which you can not see from the outside) and it throws you back a little.
@@collygodbod7012 I agree. Its very sad condition and not easy to manage. I have 3 family members suffering. You don't leave family. You find a way to cope.
Becca. You deserve someone special. Everyone does. Just remember mental illness is a exhausting up and down sickness for all involved and it can lead to the destruction of relationships on both ends. Family members, friends, lovers ( with or without a mental health disorder) , yourself can eventually get run down from it. And it can happen so much faster if your significant other thinks you don't have an illness - you want attention or your selfish or lazy or slow or childish ( you want life to easy that just your problem -NOT!) - or if they think going into the relationship with you that things won't be very hard since they have themselves together and they think all they have to do is get you to do everything they say and things will run smoothly. This kind of thinking from the start of the relationship from a person who doesn't have a mental illness can lead to constant arguments that lead to a shorten, nasty relationship
You are great man for support your wife. People with Schizophrenia are amazing people..they just need help and support with their details on daily basis Take care and continue in this great job. You and her our heroes
I don’t have schizoaffective or schizophrenia. I subscribe to keep myself educated. I’m really “tired” of mental illness having stigmas; having people being made fun of; seeing people w mental illness feeling ashamed. I’ve read some comments & see the meds prescribed are usually to treat depression or bipolar disorder. It’s 2020 & I think science should research to create meds tailored for this disease. Everyone deserves to have proper treatment, regardless is the disease is mental or physical.
Thanks for the video Rob. Im exhausted and emtionally crushed. My wife has been off her meds for over 9 months now. She was medicated for over 20 great years. Her new phsychiatrist reccommended she try to ween her self down off of the Clozaril meds and see if she may be okay without them or perhaps a suitable alternative. We watched her slowly degrade over the first few months until she finally stopped completely in an extremely ill state and now refuses to go back on her meds. She has also become paranoid of all meds her diabetes pill and cholesterol pills she stopped arbitrarily without informing anyone doctors or family. Her diabetes is much less controlled and her cholesterol has more than doubled so far .😢😢. There is no joy or happiness for months now only negativity and hatred come from her. I and her doctors and children all are on eggshells in her presense. She is the love of my life and I am at a loss for what to do. I now sleep in the basement with our dogs all of us she use to love and adore regularly. We all miss her badly. But have no way to convince her this. Its soul crushing. I feel lost.
I am so sorry you are going through this. My husband and I can completely relate to your situation. Our young adult son was in psychosis all the time. He was only on medication for a year and hated the side effects. We tried to convince him of getting back on medication and counseling, but he refused. He doesn't trust us at all. Last September he left, was living on the streets for 6 months in Seattle. We couldn't find him. He recently returned and is currently staying with his brother. We are trying to transition him home but he doesn't trust us. All we can do is pray and trust in God. Praying for your situation 🙏 ❤
Medication is necessary for many but not all people with schizophrenia. I was diagnosed 8 years ago and I don't take meds between episodes. I still have symptoms pretty much every day but I've learned how to manage them through reframing, positive suggestions, sensory stimulation and self-care.
Congratulations on your marriage! Adorable couple :) She is very lucky to find someone who supports her so well and he is lucky to find someone so appreciative of him
One other thing is avoiding power struggles. It’s so important in supporting a loved one with their meds is to not make compliance of medications into a strong handed control struggle. Also, there are times I gently remind my loved one that it’s a biochemical thing, that the medication helps with that imbalance. He has always understood that, and it seems to help him not feel “attacked” personally or like it’s a lack of something he can’t control with will power.
As someone who takes psychotropic medication (and just started supporting y'all on Patreon!), I was scared the message of this video was going to be, "Make sure your loved one is on medication at any cost." I have certainly made mistakes in my dealings with loved ones, but they often forced the issue without much compassion. I like your emphasis on building trust while trying to work for the best of the person prescribed medication. Thank you!
Just to share my perspective as the loved one of someone with SZ, my family member is completely in psychosis almost all the time when off medication. She is angry and hostile, which is terrifying, mentally draining for everyone, and of course quite miserable for her. Once she is off medication, it is very difficult to convince her to go back on (because of the psychosis). So I kind of see my handling of the medication issue as tough love in that I think the risks are too high to give my family member too much choice in the matter. I absolutely wish I could handle things better sometimes and I am not excusing your loved ones for whatever actions they might have taken that may have lacked compassion, but I just thought maybe it would help you to hear this perspective as I am sure your loved ones do what they do out of love and concern.
@@jaydashnine Thank you for sharing your perspective and I'm sorry your loved one (and you) are suffering. I'm sure you're doing everything to promote her healing. While I don't think medication has helped me, I am open to the possibility of it being helpful to some suffering with psychosis. I'd like to also gently suggest the possibility of confirmation bias in your viewing of your loved one on medication--my parents like to say how much better they think I do on meds, when actually I have done as many "crazy" things on high doses of different medications as off. Overall, I do think they're motivated by concern as you are. As I tend to remain hostile in attitude toward them, I thank you for reminding me.
Good advice. Emotions do get in the way. The illness creates a high sensitivity to input from those around the person experiencing the illusions, etc. As you say - step back and be calm.
Very sound advice. Like the way you presented the various ideas. Such a personal and difficult topic. A video like this could really also help someone suffering symptoms and experiencing first-time contact with a doctor and a diagnosis.
Anthony Padilla jusr posted asking for people to help with a spending a day with people with schizophrenia video and I think you / you guys would be perfect for it if you're comfortable with it! Hes so respectful in his interviews
So much needed information there. As a psychiatrist, I've learned so much more about the people I treat through your videos. An I believe many people in different sides of the story may think so too. Thank you.
I'm new to this my grandson just resently diagnosed with this illness he was doing so well now he's going back because he's not taking medication. We feel helpless.
No one ever should be taking a medication that has cancer and heart failure as a side effect. No nonononononononono. No psychiatrists who talk to their computers and bullshit you out the door. I was privileged to be a patient of Dr. Hoffer's. Of course he was only a person with some flawed thinking about professional issues and success but all in all his research and his humanity was very very spot on. Though he died about ten years ago or so, one can still access his clinic in Victoria, BC. They still take clients and offer Orthomolecular therapy. He also left behind an extensive library and you can order his books. The simple "How To Live With Schizophrenia" book is literally a maintenance manual of sorts and I highly recommend it.
@@jacquelineleitch7050 I will try and check out that book. I was stable on aripirazole for a year and a half but became manice through mirtazapine (all AD's apparently make me manic) I almost got sectioned again and have had big medical review's.. And Yep now I'm on 2 anti pycotics split into 3 daily doses now I need blood tests etc. And they upped me to 8mg risperidone without even checking how I'll be on 6mg.. I think I've been stable from 4mg ffs.. Anyway cheers for the input we
@Divas&DollsBeauty I've been on anti pycotics meds for a year and a half now and haven't had no problem with weight. I am slim probably coz of my mania not eating much it sleeping much. Does make some people zombies but not every one. I think they should only use them in acute emergency situations rather then as maintainence doses.. I'm more worried about what the stuff does your blood suger n white blood cell count etc. Mad shit
@Divas&DollsBeauty Ah I see, yep it's true some people gain no weight but it still mashes up your metabolism and does crazy side affects. Since I've been upped to 8mg risperidone I keep doing this involentary snarl and move my jaw around . Hate the shit can't wait to ever get off it.im.still being diagnosed 10 years on (not that I helped them moved around a lot) Right now I am down as manic episodes (I'm banned fr ADs coz they make mania worse So now I'm aripirazole 10mg in morning diazepam 15mg daily then 3mg risperidone afternoon then 5 mg risperidone and 7.5 zopiclone at night.. Been diagnosed with CPTSD GAD ASPD traits and a pychotic disorder? Anyway all the best hope your well
I am not schizophrenic but bipolar with major psychosis/paranoia. I am so glad my husband supports me either way and has stuck with me and the crazy times Ive had during our marriage and parenthood journey. I got diagnosed this year and it has been getting much better with the medication but some side effects have really made me debate continuing at times. My husband always reminds me the mess I was in and why I need medication but always trusts me if I say I need to stop or have my psychiatrist switch meds.
@@aaymathebest4705 yes, I can. It does have similar medications and causes similar hospitalizations though so I feel as though a lot of these videos relate to my family as well.
The whole video is very well done. Thank you for making it. I especially like the last piece on knowing what your ‘place’ is in supporting someone. It’s tempting to pretend to be the mental health doctor/therapist because you want to help so much. But ironically, that can be so unhelpful. Being your role in a support network is the best thing you can do. Such an important tip!
I have Schizoaffective bipolar type, ptsd, generalized anxiety disorder and borderline personality disorder and I am currently not on meds due to insurance issues and it is taking a toll on my marriage. My husband is struggling to find a way to deal with my delusions, paranoia, and hallucinations. He is now isolating himself away from me and says he doesn't know what to say or do and is in constant fear of "setting me off". More videos like this can help our loved ones see that they're not alone.
It may be time to go to the hospital. I have very similar diagnoses. Try and find a behavioral health emergency room near you and go. It's hard, but they will help you. They'll get you on meds and provide therapy and help with outpatient care. Please consider it!! Please be brave, you deserve care. An emergency room cannot turn you away. Your health is the number one priority right now.
Hope you take extreme ownership of your illness. It’s not anyone else responsibility to take care of you. My wife has illness and refuses treatment and blames everyone else . It’s her loss. By the way the longer you deny it becomes a road to no recovery.
I’m happy you’re talking about this. My friend had an episode not too long ago, and hadn’t been taking her medication. At least, I don’t believe so, because my friend has been acting different and saying she doesn’t have it. It makes me worried, but it seems like I need to be very gentle with my friend, whether they take meds or not. I’m very in the dark, but I love her and want to support her. Seeing my friend so scared makes me feel so sad.
What a great video!! Patreon’d and retweeted! Thanks so much y’all, you’re doing important work! I wish everyone knew this stuff, maybe then psychotic breaks wouldn’t be so scary, they’d be manageable bc people would know to act compassionately!! Y’all are wonderful!
Yes ...some times we feel tired as human cause we need help and support also. You are A noble and unique person. All what you are doing is not easy job but amazing Very few people can do what you are doing as support for your wife 😍🌻
This has probably the hardest thing I've ever done. My girlfriend has schizophrenia, we've been together for almost 7 years. I think the hardest thing is trying to take care of yourself too. Yalls videos have been so enlightening. Hopefully when she gets out of the hospital this time, I'll be able to help more because of yall Thank you
Robert I absolutely admire your devotion. Keep up your love for your wife. You truly are a gem. I wish I could find a man like you. At the age of 45 years old, and being African American with a disorder I find life has been hard on me. The side effects of taking medication has been terrible. One of the side effects is joint pain and sleepiness. Having being diagnosed with either bipolar disorder or Schizoaffective disorder is hard. I find that I have been forced to take medication because I am homeless. Since I gave birth to my daughter two years ago I have had to give her up for adoption to my cousin is a hard thing to grapple with. Anyway stick with your wife. You are a good person and always know people like me wish you were in my life. Please respond if you can. Call me Mabs.
I'm an African-American woman diagnosed schizoaffective bipolar type also and my mother has custody of my three year old. I feel your pain.. All I want is to be off of medication and get my kid back. Side effects are terrible, but they are just a drop in the bucket for the life I live.
@@chinahilson3461 China, I perfectly understand what you are going through. It looks like and sounds like your psychiatrist doesn't care about how much medication you take. China I took myself off of medication for three weeks and have just resumed taking a portion of the medication. I feel great. Despite the fact I did sleep all day. China I wish you luck in trying to negotiate with your psychiatrist about your problems. My psychiatrist doesn't really care. She just wants me to take the medication despite the problems I have. I had vibrations in my brain and chest and nothing was done about it. I suspected that I was being overdosed and the vibrations stopped.
Being a person with schizoaffective disorder I think it's important to give a close one with the illness time to figure out if they truly are delusional for a few years if it is in the prodromal phase. This may include being off medication. I can go several months off medication before I noticed noisy thoughts and delusions. I hope in the future the doctors and clinicians organize around this as one incident of anger or delusion I think should not mean a lifetime of being medicated until the patient gains understanding of their issues. I feel the management of the illness is in its infancy of understanding. Court ordered medical compliance recently was upped from 90 days to 180 days. Which I feel is fair. I fear in the US court orders could last longer and I severely fear lifelong mandates which I feel are fascist. There must be inherent paths to recovery without medication as we engineer a cure.
I think too much pressure on taking meds distracts from the person as a whole, and the first step of letting the person come to understand instead of expecting drugs to fix everything. There is an irony with culture’s expectations: dont do drugs they will mess u up, and with mental health do drugs because they resolve u. There’s too much blame on substances rather than the person’s internal struggles and and feelings. In both drug abuse and wanting to fix mental health.
@@CKSKing this is fine until a mother stabs her child to 'release the demons' and everyone gasps, crying 'I never saw this coming!' What I'm saying that it's a fine balance and not simply all about choice/autonomy
Everytime I go off of meds, I get more symptoms or they get worse. I strongly believe that I'm in the predomal phase and the medication i take is preventing me from experiencing full psychosis. Isn't that better? What is the benefit to stopping medication if its going to make my issues worse? This is a genuine question and I apologize if it sounds aggressive
This has been a very hard year for me physically/mentally/emotionally because we haven't found a medication that works for me. The side effects are crazy. Sweating hands/feet. Muscle pain, muscle weakness. twitching. tremors. The worst was hostility/anger. I had a very public outburst in front of all my friends during a very inappropriate time. I got into arguments with all my loved ones, dropped out of school and tried to run off. I never knew that could happen. I'm just now putting my life back together from it all.
@Marc Montti can you tell the details of your medication and can you tell how long are you living without medication,I mean from how months and years are you off from medication?
Such a great video. Thank you, Rob! Several of the tips align with Dr. Xavier Amador's LEAP method of communication, explained in his excellent book *I Am Not Sick, I Don't Need Help!*
I am a mother and sister and daughter of those with congruent diagnosises. I would be be interested in knowing how each of your parents support you both in all of this and their experiences if there are good connections with you.
Suppression of symptoms is NOT healing. Please look into the schizophrenia treatment approach they tried at Esalen institute. They let the patients have the schizophrenia so TIME was the medicine. Give them time and the situation will improve surely. It's important to accept the momentary condition and try to understand it and to EMBRACE it, as difficult as it sounds. Time will then heal. Not medication.
It's amazing that these two deal and struggle with the epitome of "insanity" (bad word that is unfortunately baked into our cultural consciousness) and yet they are the sanest and most cogent and orderly thinkers that I've ever seen.
You have no idea how helpful this channel has been to me. I have a brother with schizoaffective disorder and it is very hard to sometimes get him to take his meds, especially if he is a crisis. Thank God he is on the injection now but still needs to take a couple daily pills to help balance his moods. Thanks for all you do!
Thank you for your tips and explanations, I am so glad that you two have each other!! The part when you said that the person not taking their medication is not trying to piss you off I was like yes!! That is so true God bless y'all
Thanks a lot for the video! Could you please make a video about how to distinguish between true relationship conflicts and conflicts caused by delusions or paranoia? Thank you!
Everyone needs to read Dr Joanne Moncrieffs work: The Myth of the Chemical Cure and The Bitterest Pills re: neuroleptics in particular. She is a psychiatrist at UCL in London. Not a crackpot in other words. She’s a well respected academic.
When I was forced off of my medication through circumstances nobody had any power to change (in my personal relationship with God this is him recognizing I no longer needed them when I couldn't see that myself, and him engineering circumstances that forced me off of them), an intense period of mental pain and suffering began. It was the pain of forging the thoughts and beliefs that would make it possible for me to live without medication. Within a couple days of being forced off the medication, three of the disciplines In my life went through the roof. One, I had been sleeping at least 10 hours a day, which I knew I needed to change but didn't know how to, down to what became 4 hours of sleep a day over the next month. Something I had always wanted to be able to do. Next, a very long standing heavy diet coke habit I couldn't end suddenly became controllable and disciplined, and ended shortly after 18 years without progress. And I started to work three times as much as I had before. Even though the pain of this transformation was so painful for a few weeks, and I literally wanted to die at one point, it became clear the the best part of my life was now starting to happen. It continues to get better today.
Off topic but important! Anthony Padilla is doing an episode on people with schizophrenia and they're still looking for people to interview(over video call) ! He's extremely respectful and nice and really puts in effort to educate people about and destigmatise many different topics. This could be an awesome opportunity to educate an even wider audience and grow your channel.
I want to give my experience with my sister. I everyday give her the medicine on time. Take care of her food Even the daily shower .. Because she afraid sometimes to enter the bathroom alone because maybe she sees some illusion . People who has this issue need someone to be with them all the time like baby
Is it wrong to have boundaries...to say you cannot live here unless you are taking medication? Mom and I (sister) cannot handle the psychosis (10 yrs now). I do believe we should build trust with the person but it should go both ways. I need to be able to trust the person with schiz too.
My daughter lives 6 hours away she has been diagnosed withschizoeffect disorder with bipolar and depression. She was diagnosed about 4 years ago. She also was on drugs Wich we figured that's what started it. She's in her early 40's . She has been on medication . She is having paranoid diulutions hearing voices negative ones. Anyway she has been living from shelters to shelters. I've been keeping in touch with her by phone. But I just have no idea how to talk with her when she is hearing voices are she will want me to buy her a bus tkt to say New Orleans or now it's Florida or help her but a car. She doesn't want to move back home. So we're do I turn for help speaking with her?
Not everyone off medication goes off the deep end. I was off for two years without a problem and then a significant and I mean significant stressor in my life caused a relapse but I was fine apart from that.
Same for me four years without meds then all it took was a abusive boss and I was stressing to relapse into psychosis The abusive boss told me sarcastically “I’m the chosen one” and everyone laughed. Adding to my delusion
Thanks Marian, I appreciate your comment. I'm happy to hear that you were able to successfully manage your symptoms without medication. I think if people are able to manage their illness without medication then that's ideal, and I should have mentioned that. I'm not strictly "pro med", and only have my own experience with Lauren to go on here. For her, medication helps make the symptoms manageable. I should have also been more clear that the purpose of this video was to address situations where someone is not well and also is not on medication. I think if a person is experiencing intense psychosis, medication is what can really help bring them back. And the faster they get treatment, the better the prognosis. - Rob
@@LivingWellAfterSchizophrenia have you guys tried cbd for psychosis? I found both while on seroquel and off of it, a high dose cbd tinctures or high cbd weed strain has been super effective in managing my delusions and hallucinations as well as the bodily pain in the fallout of a mood episode. Its s very useful thing to have on hand and use when needed. Even on pills my mood episodes would get severe sometimes, and that definitely helped calm me.
The only med that I ever too was Ativan. I used it to put myself to sleep for a couple of days when voices were literally making my head ache and I was paralyzed with fear and self-loathing. Yes it was lonely and as this was thirty years ago I had almost no support at all for my med-less choice. I was denied access to programs. I was called obviously deluded. It was all just more class system abuse and unenlightened science and misogeny. I could go on about ritualized Paternalist abuse of mental health for several volumes. Literature, science, social work, governments, the community. Fortunately the opposite also exists. You find a door in socialist democracies and then you begin to see that the issue is more the structure of health care. Designer meds that are only increased doses of old school drugs that may or may not be temporarily helpful will never redesign the health care system. Believing in meds as a critical aspect of recovery from serious trauma and psychiatric issues is deluded. And don't try to slash my mental health off as minor. It was in no way minor. It isn't minor. But I live with my issues day to day, like anyone. My kids re great and have issues day to day. They are amazing. My partner in life deals or doesn't deal with his issues and we work it out day by day. And we are just not on the deluded spectrum.
A doctor took me off Klonopin cold turkey, omg it was awful. I got these headaches that felt like my head was shaking violently i couldn't do anything but lay there.
No matter how good and beneficial a medication may seem I don't think it should be forced on an unwilling person. I'm more worried about being forced to medicate against my will than I am of any health problem. We all have different opinions yet we all think we are right all the time. It doesn't make sense, yet people in power decide that because they know best they can force vaccinations for this and that virus, or force people with mental health problems to take their meds.
I don't like the side effects like akathisia, tardive dyskinesia, dystonia, Parkinsonism, weight gain, higher blood sugar, and cardiovascular damage. They should not be able to force someone to take a medication that has these side effects. I stopped taking my meds over five years ago and I have not been hospitalized. Counseling was far more helpful for me than the meds. CBT, DBT, and Mindfulness are very helpful for me. They gave me coping skills that I still use daily.
Same opinion I left meds five months ago I had psicosis and meds made me feel like a robot and the side effects same like you. Im doing well for now but if its return Im going to take meds again . Im from Argentina.
@@silviamiller5332 I agree that you should do what makes you feel better. Only you know how a medication makes you feel. Also -- Lionel Messi is my hero!
the reason I refuse to take my antipsychotic meds is because they cause akathisia, tardive dyskinesia, dystonia, and they also cause weight gain, higher blood sugar and cardiovascular damage to me. I personally believe they do me far more harm than good. I was able to find coping skills through counseling with a therapist who was skilled in CBT, DBT, and Mindfulness. I am off my meds and have not taken them in over five years and have not been hospitalized in all that time. I am still mentally ill, but now I have coping skills that I use to deal with it.
how often do you do checkups with family doctor since you been off meds? I've been off meds 3 months now and dont plan on looking back. my psychiatrist took me off but my family doctor wants me to stay on.
What do you do with a forty-year-old son , stubborn, stubborn and unwilling to listen to anything, no medication, no therapy, starving himself, and having been to the hospital several times? And today decided with all the bad situation he has from schizophrenia, to be homeless. How should I as his mother help him? to be homeless is a mistake? And how do you deal with the situation?
In our case, my sister intentionally refuses medication because the family wants her on it. She has admitted that she is spiteful and rebellious and will do the opposite of what others want from her.
Help... My loved one with (undiagnosed) psychosis+anosognosia wants a car and believes a car will be the solution toward gaining control over their life. In addition to general delusions and false memories, they often get what you'd call "episodes" when things are very difficult for them to process. I want to help them gain autonomy and trust, but I'm having trouble finding info on risks/guidelines for this. To be clear: - Risk: they could get into an accident (but how big is this risk?) - Smaller risk: they could lose the car - Upside: improvement to their life; independent transportation so they can maintain a job and have a life during winter - Upside: less sense that they're being limited by their family
Thanks for the explanation but what to do when the situation already escalated, they went to jail, due to their disassociative behavior and out of reality they are adults living in with you but refuse to get the help they need, any ideas?
Helping them manage side effects excessive sleep is a turn off. And help with motivation to work and exercise is welcome since we usually die from heart problems earlier in life
Would it be accurate to compare an alcoholic to someone with mental illness? Hmmm. My sister has refused medication for 10 yrs. It is difficult to have empathy and compassion for someone who will not care for themselves. My sister has spent 10 years mutilating her skin (arms, legs, face, scalp). She is harming herself...does this justify for her to be on meds?
Hello Rob, Let me just say that I take Dolmatil(sulpiride) every day with no side effects apart from a certain risk of getting Parkinson's maybe later and I will take this drug till the day I die - I'm 67 - when I know for certain that of my own three psychotic episodes and hospitalised May 1987, October 1988 and November 2007 I became psychotic in 1988 and 2007 for no other reason than that I had stopped taking the Dolmatil. It's as clear cut as that no ifs buts or maybes. I understand how someone would feel having side effects. I also understand we can feel well enough, like I did, with no symptoms whatsoever to think I didn't need the medication anymore. It must be the most harrowing experience for you when Lauren is not well and trying to explain to her that she needs to take the medication. When I was forcibly injected with a massive overdose of a drug called Largactil(chlorpromazine) in early May 1987 aged 33 the side effects were horrendous including drug induced Parkinsonism, a dramatic increase in weight from 161 pounds to 205 pounds and totally robbed of all my energy such that I was one of the living dead and only now today recovering and moving towards what might be more normal for me at the advanced age however of 67 such that I am eternally grateful to God that I'm still here and feeling as well as I do. So let me just repeat what I most want to say or get across: if I stop taking the Dolmatil I will have another psychotic episode and that really will be the end of my life. God bless you, :) Peter Nolan. Ph.D.(physics). Dublin. Ireland. Ps I donated another $30CAD to the $30CAD I had donated to start with because my total in €'s is only €40 and not very much.
@@aaymathebest4705 Hello aayma, I had stress induced psychosis in April of 1987 and then hospitalised early May 1987. I had delusions of grandeur one of the many symptoms of schizophrenia. I know for a fact that when I stopped taking the prescribed medication Dolmatil(sulpiride) in 1988 and 2007 I had two subsequent episodes. I do not suffer from schizophrenia but I developed schizophrenia from extreme stress. Had I not experienced that extreme stress I would never have had schizophrenia. Other people develop schizophrenia but who have not experienced stress. They develop schizophrenia for other reasons. However when I had delusions I really had schizophrenia and if I stop taking Dolmatil the prescribed medication I will develop schizophrenia again for sure. All the best, Peter.
@@peternolan814 thanks Peter...can you tell ,Is there no permanent treatment if sczophernia?because I heard in hot countries,It's less and manageable.....and it has less side effects in hot countries....
How about not supporting going off medication? What about responsibilities of a person with S-a disorder? Is their controlling others, oppositional behavior, narcissistic behavior and irrational/delusional/paranoid behavior to be accepted by those trying to help? Is impulsive finding the keys and taking off driving the car ok? Is the common phenomenon of going off medication (often secretly) ok? There are a lot of reasonable questions about how much acceptance and suffering caregivers, family and others should have for episodes of the impulsive, delusional or other destructive behaviors.
In my experience, going off medication does not lead to a relapse immediately and maybe if self-care is managed well, never will. I can be off medication for quite a while and only when I lack significant sleep-- multiple near-sleepless nights (due to a hectic job schedule)-- will spiral into a psychosis. I am currently off medication again due my issues with the expected 25 year (!) reduced life expectancy caused by antipsychotics, diabetes, weight gain and flattening effect. I'm prescribed Abilify and Lithium for Bipolar I (had been diagnosed schizoaffective and schizophrenia in the past). There is huge reasonable incentive to get off of these medications. It is not a crazy or reckless idea at all. In fact, in Finland first episode psychoses are treated withOUT medication and 80% of patients go on to recover and NEVER have a psychosis again. That goes to show that there are likely lots of better treatments possible. I'd love to see an episode of you exploring alternative treatments for schizophrenia/schizoaffective disorder. Thanks for all you do! Also congratulations on your marriage!
YOU WOULD BE SO MUCH BETTER THAN MOST OF THE MENTAL HEALTH WORKERS ACTUALLY YOU 'VE GOT SO GOOD AND REALISTIC WAY TO UNDERSTAND THE ISSUE MUCH MORE HONNESTLY TNAN MUST OF THEM DO ,THANK FOR YOUR TIME TO EXPLAIN, THEY DO NOT TALK TO YOU ,YOU SHOULD GET LUCKY TO GET AN "HELLO" FROM THEM ,THANKS FOR YOUR SUPPORT.
Ok...i use notes....when I get ideas.. Clozapine..is said to cause seizure and blocks a lot of receptors. I have had sexual withdrawal.....like more arousal on lowering med I think alpha receptors get unblocked.....too fast
I think it is very important not to look at mental illness being broken. Do not accept this stigma! We are people with altered brain chemistry, no different than someone with diabetes or hypothyroidism. Yes, we must work hard to manage our symptoms and report changes in thoughts or behaviors as they arise. Maintaining a consistent routine is imperative! Especially sleep and nutrition. Its best to have a trusted person to check in with, to communicate their observations to us. But DO NOT give power to anyone who looks down on you!
Thank you for making these videos, my brother was diagnosed about 15 years ago when he had a psychotic break (sorry if I am using the wrong terminology, I’m trying to educate myself). I was 13 years old when it happened, he attacked my eldest brother because he thought it that my eldest brother was trying to control his brain with his cell phone. It was very Trumatic for me and also probably for him. He grabbed a knife and trying to stab my eldest brother. No one was physically hurt during this altercation. He was taken to the hospital and was monitored for a little while. They put him on medication which seems to work when he takes it. Fast forward 15 years. He currently is not taking his medication. My mother was the main person who helped him, and encouraged him to go to the doctor. My mother died this year. So I’m doing my best to educate myself on how to interact with my brother who is diagnosed with schizophrenia and how to be supportive for him. For me I’m trying to get past the trauma that happened, and understand that he had a psychotic break and that necessarily doesn’t define who he is. However I am very cautious when I’m around him. My question is, how do I respond when he starts talking about things that clearly don’t make sense. When he starts talking about aliens speaking to him, or weird things he saw on the TV which clearly I don’t know if they are on the TV or not. Or speaking nonsense that you can clearly tell is real to him, but not necessarily real to anyone else. He is extremely paranoid. What is the proper way to respond without looking at them like they’re “crazy”, And telling them they’re wrong. Because that necessarily isn’t the best way to go about it. Typically I just casually blow off whatever he says and just try to turn it into a positive or change the subject. This is my brother and I love him, and I want what’s best for him. And I don’t want to add more stress and want him to feel safe around me.
Hi, what would you do if the love one gone crazy and thinks that doctors and social services are EVIL and are trying to harm that person, moreover instead of going to doctor that person found cocaine dealer and gone crazy addicted to cocaine because it makes her feel confident and smart. If taken to hospital gets very aggressive and scared at the same time. Escapes from waiting room and lives in the bush for few days. What to do. How to help such person.
Only when he's in a lucid enough state, I'd say... When he's in a full blown psychotic episode, reasoning with him or trying to get him to focus on a video, enough to actually understand the message, probably won't do anything good. If he's having a good day and he's able to understand that sometimes his mind makes him believe things that aren't true, go ahead and talk to him about it. You could use an educational video to get the conversation started, but most important is that you're communicating with each other. It all depends on the age of the son as well... the approach must of course be different if he's 5 instead of 15, for example. Videos like this one are a great ressource for you to learn more about psychosis. The better you understand his illness, the better you'll be able to understand your son and help him navigate the troubling waters of psychosis. And never forget that you're not just 'taking care of a psychotic child' - you're raising your son! I have schizoaffective disorder and I live a pretty normal life now (as long as I take my meds and talk to my psychiatrist once a week). It's not easy and there were periods in my life where things were more difficult, but my parents never gave up on me and now we've found the right meds that help me with my symptoms and i learned lots of helpful techniques to deal with my own mind in a more healthy way. It takes time and effort from all sides, but it *is* possible to live a happy, independent and productive life with a mental illness involving psychosis.
Wow. It is a real thing. Have been there and have learnt to take some time out to re-charge as if not I will be a risk of developing MH issues myself . In order to help my daughter, I need to take care of myself first ..... the oxygen analogy on a plane ..... put your own mask on first.
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You guys got married? Congrats!!
omg *husband* im so happy for you guys
What a wonderful relationship you have :) gives me hope for myself to find someone special who understands my illness.
People have a level of tolerance. And that level can be reached. Then relationship starts to break down.
Medication is very important however when non compliancy is present it can be wear the carer down. As you have to be vigilant
Around there behaviour. When you get older it's harder to tolerate.
At some point the care giver has to think of their own well being when toleration limit has been reached.
@@hilaryadele662 In that case, it is best for the person not to have hopes of a long term relationship. A short loving relationship for both people is all that can be expected until either a cure is eventually found for the voices and/or hallucinations or better medications are created to produce near normal pre mental illness behavior or more tolerable side effects. Antipsychotics have some heavy duty side effects. Metabolic problems which can effect weight and lead to diabetes, involuntary muscle movements, slow thinking , tiredness, exhaustion, kidney disease, cancer and a potential lost of their former spontaneous, fun loving personality traits.
@@hilaryadele662 But of course having a mental health disorder can cause a lost of being spontaneous and can being quite numbing for the person affected. I give all due respect to the caretaker it is hard to be there for a sick individual. You look at them physically and think nothing is wrong with them, but don't realize that s/he has something going on internally ( which you can not see from the outside) and it throws you back a little.
@@collygodbod7012 I agree. Its very sad condition and not easy to manage. I have 3 family members suffering.
You don't leave family. You find a way to cope.
Becca. You deserve someone special. Everyone does. Just remember mental illness is a exhausting up and down sickness for all involved and it can lead to the destruction of relationships on both ends. Family members, friends, lovers ( with or without a mental health disorder) , yourself can eventually get run down from it. And it can happen so much faster if your significant other thinks you don't have an illness - you want attention or your selfish or lazy or slow or childish ( you want life to easy that just your problem -NOT!) - or if they think going into the relationship with you that things won't be very hard since they have themselves together and they think all they have to do is get you to do everything they say and things will run smoothly. This kind of thinking from the start of the relationship from a person who doesn't have a mental illness can lead to constant arguments that lead to a shorten, nasty relationship
You are great man for support your wife. People with Schizophrenia are amazing people..they just need help and support with their details on daily basis
Take care and continue in this great job. You and her our heroes
I don’t have schizoaffective or schizophrenia. I subscribe to keep myself educated. I’m really “tired” of mental illness having stigmas; having people being made fun of; seeing people w mental illness feeling ashamed. I’ve read some comments & see the meds prescribed are usually to treat depression or bipolar disorder. It’s 2020 & I think science should research to create meds tailored for this disease. Everyone deserves to have proper treatment, regardless is the disease is mental or physical.
Don't call them mh then....
@@jennifermoriarty2188 what.
Thanks for the video Rob. Im exhausted and emtionally crushed. My wife has been off her meds for over 9 months now. She was medicated for over 20 great years. Her new phsychiatrist reccommended she try to ween her self down off of the Clozaril meds and see if she may be okay without them or perhaps a suitable alternative. We watched her slowly degrade over the first few months until she finally stopped completely in an extremely ill state and now refuses to go back on her meds. She has also become paranoid of all meds her diabetes pill and cholesterol pills she stopped arbitrarily without informing anyone doctors or family. Her diabetes is much less controlled and her cholesterol has more than doubled so far
.😢😢. There is no joy or happiness for months now only negativity and hatred come from her. I and her doctors and children all are on eggshells in her presense. She is the love of my life and I am at a loss for what to do. I now sleep in the basement with our dogs all of us she use to love and adore regularly. We all miss her badly. But have no way to convince her this. Its soul crushing. I feel lost.
I'm sorry you and your wife went through/are going through this. Has anything changed since your original comment?
I am so sorry you are going through this. My husband and I can completely relate to your situation. Our young adult son was in psychosis all the time. He was only on medication for a year and hated the side effects. We tried to convince him of getting back on medication and counseling, but he refused. He doesn't trust us at all. Last September he left, was living on the streets for 6 months in Seattle. We couldn't find him. He recently returned and is currently staying with his brother. We are trying to transition him home but he doesn't trust us. All we can do is pray and trust in God. Praying for your situation 🙏 ❤
I think man like you no longer here on this planet 😊
Man like you who are supporting are very creative and unique 🌻🌹🌷continue the great job.
Medication is necessary for many but not all people with schizophrenia. I was diagnosed 8 years ago and I don't take meds between episodes. I still have symptoms pretty much every day but I've learned how to manage them through reframing, positive suggestions, sensory stimulation and self-care.
are u still on meds?
What natural foods do I eat so that I can manage without meds?
It's encouraging to see this.
Congratulations on your marriage! Adorable couple :) She is very lucky to find someone who supports her so well and he is lucky to find someone so appreciative of him
One other thing is avoiding power struggles. It’s so important in supporting a loved one with their meds is to not make compliance of medications into a strong handed control struggle.
Also, there are times I gently remind my loved one that it’s a biochemical thing, that the medication helps with that imbalance. He has always understood that, and it seems to help him not feel “attacked” personally or like it’s a lack of something he can’t control with will power.
it's not a biochemical thing that's false.. antipsychotics make you more psychotic
@@tysonmikel9222 What do you think is the best natural food then ?
@@apoorva626 anything that grows from the earth start with that lots of greens beans nuts fruits and organic stuff
As someone who takes psychotropic medication (and just started supporting y'all on Patreon!), I was scared the message of this video was going to be, "Make sure your loved one is on medication at any cost." I have certainly made mistakes in my dealings with loved ones, but they often forced the issue without much compassion. I like your emphasis on building trust while trying to work for the best of the person prescribed medication. Thank you!
Just to share my perspective as the loved one of someone with SZ, my family member is completely in psychosis almost all the time when off medication. She is angry and hostile, which is terrifying, mentally draining for everyone, and of course quite miserable for her. Once she is off medication, it is very difficult to convince her to go back on (because of the psychosis). So I kind of see my handling of the medication issue as tough love in that I think the risks are too high to give my family member too much choice in the matter. I absolutely wish I could handle things better sometimes and I am not excusing your loved ones for whatever actions they might have taken that may have lacked compassion, but I just thought maybe it would help you to hear this perspective as I am sure your loved ones do what they do out of love and concern.
@@jaydashnine Thank you for sharing your perspective and I'm sorry your loved one (and you) are suffering. I'm sure you're doing everything to promote her healing. While I don't think medication has helped me, I am open to the possibility of it being helpful to some suffering with psychosis. I'd like to also gently suggest the possibility of confirmation bias in your viewing of your loved one on medication--my parents like to say how much better they think I do on meds, when actually I have done as many "crazy" things on high doses of different medications as off. Overall, I do think they're motivated by concern as you are. As I tend to remain hostile in attitude toward them, I thank you for reminding me.
bro, good shit. you're thorough, i appreciate that, paranoid people feel blessed to have thorough people around. you're thorough. good job
Good advice. Emotions do get in the way. The illness creates a high sensitivity to input from those around the person experiencing the illusions, etc. As you say - step back and be calm.
Very sound advice. Like the way you presented the various ideas. Such a personal and difficult topic. A video like this could really also help someone suffering symptoms and experiencing first-time contact with a doctor and a diagnosis.
Anthony Padilla jusr posted asking for people to help with a spending a day with people with schizophrenia video and I think you / you guys would be perfect for it if you're comfortable with it! Hes so respectful in his interviews
So much needed information there. As a psychiatrist, I've learned so much more about the people I treat through your videos. An I believe many people in different sides of the story may think so too. Thank you.
I'm new to this my grandson just resently diagnosed with this illness he was doing so well now he's going back because he's not taking medication. We feel helpless.
@@sandraruybalid6372 Are there any natural foods instead of the medicine?
Side effects suck sooooo much
Switching from Aripiprazole to risperidone (down to 10mg now and up to 6mg risperidone) heading towards 0mg and 8mg.
Dunno which one is worse
No one ever should be taking a medication that has cancer and heart failure as a side effect. No nonononononononono. No psychiatrists who talk to their computers and bullshit you out the door.
I was privileged to be a patient of Dr. Hoffer's. Of course he was only a person with some flawed thinking about professional issues and success but all in all his research and his humanity was very very spot on. Though he died about ten years ago or so, one can still access his clinic in Victoria, BC. They still take clients and offer Orthomolecular therapy. He also left behind an extensive library and you can order his books.
The simple "How To Live With Schizophrenia" book is literally a maintenance manual of sorts and I highly recommend it.
@@jacquelineleitch7050 I will try and check out that book. I was stable on aripirazole for a year and a half but became manice through mirtazapine (all AD's apparently make me manic)
I almost got sectioned again and have had big medical review's..
And Yep now I'm on 2 anti pycotics split into 3 daily doses now I need blood tests etc.
And they upped me to 8mg risperidone without even checking how I'll be on 6mg..
I think I've been stable from 4mg ffs..
Anyway cheers for the input we
@Divas&DollsBeauty I've been on anti pycotics meds for a year and a half now and haven't had no problem with weight. I am slim probably coz of my mania not eating much it sleeping much. Does make some people zombies but not every one.
I think they should only use them in acute emergency situations rather then as maintainence doses..
I'm more worried about what the stuff does your blood suger n white blood cell count etc. Mad shit
@Divas&DollsBeauty Ah I see, yep it's true some people gain no weight but it still mashes up your metabolism and does crazy side affects.
Since I've been upped to 8mg risperidone I keep doing this involentary snarl and move my jaw around
.
Hate the shit can't wait to ever get off it.im.still being diagnosed 10 years on (not that I helped them moved around a lot)
Right now I am down as manic episodes (I'm banned fr ADs coz they make mania worse
So now I'm aripirazole 10mg in morning diazepam 15mg daily then 3mg risperidone afternoon then 5 mg risperidone and 7.5 zopiclone at night..
Been diagnosed with CPTSD GAD ASPD traits and a pychotic disorder?
Anyway all the best hope your well
I am not schizophrenic but bipolar with major psychosis/paranoia. I am so glad my husband supports me either way and has stuck with me and the crazy times Ive had during our marriage and parenthood journey. I got diagnosed this year and it has been getting much better with the medication but some side effects have really made me debate continuing at times. My husband always reminds me the mess I was in and why I need medication but always trusts me if I say I need to stop or have my psychiatrist switch meds.
@@BeingBetter can you tell the difference between bipolar and SCHZOPHERNIA?
@@aaymathebest4705 yes, I can. It does have similar medications and causes similar hospitalizations though so I feel as though a lot of these videos relate to my family as well.
@@aliciasmith4421 thanks for replying...your husband is a great man of the world...real man
@@aliciasmith4421 we also need to see your videos with your husbands and about your friendship,about your love,care for each other ...
The whole video is very well done. Thank you for making it.
I especially like the last piece on knowing what your ‘place’ is in supporting someone. It’s tempting to pretend to be the mental health doctor/therapist because you want to help so much. But ironically, that can be so unhelpful. Being your role in a support network is the best thing you can do. Such an important tip!
I have Schizoaffective bipolar type, ptsd, generalized anxiety disorder and borderline personality disorder and I am currently not on meds due to insurance issues and it is taking a toll on my marriage. My husband is struggling to find a way to deal with my delusions, paranoia, and hallucinations. He is now isolating himself away from me and says he doesn't know what to say or do and is in constant fear of "setting me off". More videos like this can help our loved ones see that they're not alone.
I'm sorry you are going through this! You are very strong 💗
I STRONGLY Suggest that you get on some form of public aid A.S.A.P because you shouldn't have your husband scared to set you off.
It may be time to go to the hospital. I have very similar diagnoses. Try and find a behavioral health emergency room near you and go. It's hard, but they will help you. They'll get you on meds and provide therapy and help with outpatient care. Please consider it!! Please be brave, you deserve care. An emergency room cannot turn you away. Your health is the number one priority right now.
Hope you take extreme ownership of your illness. It’s not anyone else responsibility to take care of you. My wife has illness and refuses treatment and blames everyone else . It’s her loss. By the way the longer you deny it becomes a road to no recovery.
I'm so sorry.
I’m happy you’re talking about this. My friend had an episode not too long ago, and hadn’t been taking her medication. At least, I don’t believe so, because my friend has been acting different and saying she doesn’t have it. It makes me worried, but it seems like I need to be very gentle with my friend, whether they take meds or not. I’m very in the dark, but I love her and want to support her. Seeing my friend so scared makes me feel so sad.
You are a special gentleman to love so much and bare the burden on mental illness. You get 10 high fives! Thanks for sharing.
What a great video!! Patreon’d and retweeted! Thanks so much y’all, you’re doing important work! I wish everyone knew this stuff, maybe then psychotic breaks wouldn’t be so scary, they’d be manageable bc people would know to act compassionately!! Y’all are wonderful!
Yes ...some times we feel tired as human cause we need help and support also.
You are A noble and unique person.
All what you are doing is not easy job but amazing
Very few people can do what you are doing as support for your wife 😍🌻
I watch your channel.
My sister having this issue. I am trying to support her as much as I can.
Thanks شكرا❤
This has probably the hardest thing I've ever done. My girlfriend has schizophrenia, we've been together for almost 7 years. I think the hardest thing is trying to take care of yourself too. Yalls videos have been so enlightening. Hopefully when she gets out of the hospital this time, I'll be able to help more because of yall
Thank you
Staying on medication and lowering your dosage is also a thing
Sounds better to me
Agreed, though he did mention making adjustments with a psychiatrist
Robert I absolutely admire your devotion. Keep up your love for your wife. You truly are a gem. I wish I could find a man like you. At the age of 45 years old, and being African American with a disorder I find life has been hard on me.
The side effects of taking medication has been terrible. One of the side effects is joint pain and sleepiness.
Having being diagnosed with either bipolar disorder or Schizoaffective disorder is hard. I find that I have been forced to take medication because I am homeless.
Since I gave birth to my daughter two years ago I have had to give her up for
adoption to my cousin is a hard thing to grapple with.
Anyway stick with your wife. You are a good person and always know people like me wish you were in my life. Please respond if you can.
Call me Mabs.
I'm an African-American woman diagnosed schizoaffective bipolar type also and my mother has custody of my three year old. I feel your pain.. All I want is to be off of medication and get my kid back.
Side effects are terrible, but they are just a drop in the bucket for the life I live.
Mans...don't give up you are also strong try to findout a good person through your family and friends....also you need to give videos on you tube
Mans....also can I ask..Are you female?Then you are so strong...
@@aaymathebest4705 yes I am a female.
@@chinahilson3461 China, I perfectly understand what you are going through. It looks like and sounds like your psychiatrist doesn't care about how much medication you take.
China I took myself off of medication for three weeks and have just resumed taking a portion of the medication. I feel great. Despite the fact I did sleep all day.
China I wish you luck in trying to negotiate with your psychiatrist about your problems.
My psychiatrist doesn't really care. She just wants me to take the medication despite the problems I have.
I had vibrations in my brain and chest and nothing was done about it. I suspected that I was being overdosed and the vibrations stopped.
Thank you for being there and supportive of lauren. This channel is a god send to the rest of us.
Being a person with schizoaffective disorder I think it's important to give a close one with the illness time to figure out if they truly are delusional for a few years if it is in the prodromal phase. This may include being off medication. I can go several months off medication before I noticed noisy thoughts and delusions.
I hope in the future the doctors and clinicians organize around this as one incident of anger or delusion I think should not mean a lifetime of being medicated until the patient gains understanding of their issues.
I feel the management of the illness is in its infancy of understanding.
Court ordered medical compliance recently was upped from 90 days to 180 days. Which I feel is fair. I fear in the US court orders could last longer and I severely fear lifelong mandates which I feel are fascist. There must be inherent paths to recovery without medication as we engineer a cure.
I think too much pressure on taking meds distracts from the person as a whole, and the first step of letting the person come to understand instead of expecting drugs to fix everything. There is an irony with culture’s expectations: dont do drugs they will mess u up, and with mental health do drugs because they resolve u. There’s too much blame on substances rather than the person’s internal struggles and and feelings. In both drug abuse and wanting to fix mental health.
@@CKSKing this is fine until a mother stabs her child to 'release the demons' and everyone gasps, crying 'I never saw this coming!'
What I'm saying that it's a fine balance and not simply all about choice/autonomy
Everytime I go off of meds, I get more symptoms or they get worse. I strongly believe that I'm in the predomal phase and the medication i take is preventing me from experiencing full psychosis. Isn't that better? What is the benefit to stopping medication if its going to make my issues worse? This is a genuine question and I apologize if it sounds aggressive
your content is so valuable, thank you
This has been a very hard year for me physically/mentally/emotionally because we haven't found a medication that works for me.
The side effects are crazy. Sweating hands/feet. Muscle pain, muscle weakness. twitching. tremors.
The worst was hostility/anger. I had a very public outburst in front of all my friends during a very inappropriate time. I got into arguments with all my loved ones, dropped out of school and tried to run off.
I never knew that could happen. I'm just now putting my life back together from it all.
😥😪
Very appreciated. From the other side of the fence lol. Thank you. Quite wise advice. Rob and Lauren please continue your work🙏
Love & trust is making miracles
i’m terrified of being off my medication
Good for you. Stay on!!!!
No need to be terrified. Many do just fine without it if weaned off slowly.
Do what is right for you!
Me too.
@Marc Montti can you tell the details of your medication and can you tell how long are you living without medication,I mean from how months and years are you off from medication?
Such a great video. Thank you, Rob! Several of the tips align with Dr. Xavier Amador's LEAP method of communication, explained in his excellent book *I Am Not Sick, I Don't Need Help!*
Thank you so much for sharing this! I am going through this with my husband. ❤
Good job.
Keep it up, Rob.
You are good folks.
I am a mother and sister and daughter of those with congruent diagnosises. I would be be interested in knowing how each of your parents support you both in all of this and their experiences if there are good connections with you.
Medication has slowed me down made me numb and hate life. It’s not fair.
It is poison. Doesnt help
Suppression of symptoms is NOT healing. Please look into the schizophrenia treatment approach they tried at Esalen institute. They let the patients have the schizophrenia so TIME was the medicine. Give them time and the situation will improve surely. It's important to accept the momentary condition and try to understand it and to EMBRACE it, as difficult as it sounds. Time will then heal. Not medication.
This channel is so important! Thank you
It's amazing that these two deal and struggle with the epitome of "insanity" (bad word that is unfortunately baked into our cultural consciousness) and yet they are the sanest and most cogent and orderly thinkers that I've ever seen.
Ditto
You have no idea how helpful this channel has been to me. I have a brother with schizoaffective disorder and it is very hard to sometimes get him to take his meds, especially if he is a crisis. Thank God he is on the injection now but still needs to take a couple daily pills to help balance his moods. Thanks for all you do!
God doesnt want your brother on an injection
Thank you for your tips and explanations, I am so glad that you two have each other!! The part when you said that the person not taking their medication is not trying to piss you off I was like yes!! That is so true God bless y'all
My sister admits to not taking medication to piss off the family. It can happen.
Thanks a lot for the video! Could you please make a video about how to distinguish between true relationship conflicts and conflicts caused by delusions or paranoia? Thank you!
Love this. Thank you so much.
Thank you, Rob, for talking about this i needed this.
I'm happy for you guys God bless you both
Everyone needs to read Dr Joanne Moncrieffs work: The Myth of the Chemical Cure and The Bitterest Pills re: neuroleptics in particular. She is a psychiatrist at UCL in London. Not a crackpot in other words. She’s a well respected academic.
I’m so glad you mentioned her books. She is a wonderful woman.
Marian M7:what did they say in their books?
aayma the best ua-cam.com/video/QFrEH7df-hs/v-deo.html
It’s all in the link above.
When I was forced off of my medication through circumstances nobody had any power to change (in my personal relationship with God this is him recognizing I no longer needed them when I couldn't see that myself, and him engineering circumstances that forced me off of them), an intense period of mental pain and suffering began. It was the pain of forging the thoughts and beliefs that would make it possible for me to live without medication. Within a couple days of being forced off the medication, three of the disciplines In my life went through the roof. One, I had been sleeping at least 10 hours a day, which I knew I needed to change but didn't know how to, down to what became 4 hours of sleep a day over the next month. Something I had always wanted to be able to do. Next, a very long standing heavy diet coke habit I couldn't end suddenly became controllable and disciplined, and ended shortly after 18 years without progress. And I started to work three times as much as I had before. Even though the pain of this transformation was so painful for a few weeks, and I literally wanted to die at one point, it became clear the the best part of my life was now starting to happen. It continues to get better today.
Off topic but important! Anthony Padilla is doing an episode on people with schizophrenia and they're still looking for people to interview(over video call) ! He's extremely respectful and nice and really puts in effort to educate people about and destigmatise many different topics. This could be an awesome opportunity to educate an even wider audience and grow your channel.
I want to give my experience with my sister.
I everyday give her the medicine on time. Take care of her food
Even the daily shower ..
Because she afraid sometimes to enter the bathroom alone because maybe she sees some illusion .
People who has this issue need someone to be with them all the time like baby
Ndah Mukhlef..same like my daughter...Did you try the spiritual healing according to Asian and sunnah?
Is it wrong to have boundaries...to say you cannot live here unless you are taking medication? Mom and I (sister) cannot handle the psychosis (10 yrs now). I do believe we should build trust with the person but it should go both ways. I need to be able to trust the person with schiz too.
My daughter lives 6 hours away she has been diagnosed withschizoeffect disorder with bipolar and depression. She was diagnosed about 4 years ago. She also was on drugs Wich we figured that's what started it. She's in her early 40's . She has been on medication . She is having paranoid diulutions hearing voices negative ones. Anyway she has been living from shelters to shelters. I've been keeping in touch with her by phone. But I just have no idea how to talk with her when she is hearing voices are she will want me to buy her a bus tkt to say New Orleans or now it's Florida or help her but a car. She doesn't want to move back home. So we're do I turn for help speaking with her?
And thank you so so much for this video i really needed some advice and it's been so helpful!
Thank you, both of you!
Thank you. This is helpful!
Great video Rob! Super informative and makes a lot of sense.
Not everyone off medication goes off the deep end. I was off for two years without a problem and then a significant and I mean significant stressor in my life caused a relapse but I was fine apart from that.
Same for me four years without meds then all it took was a abusive boss and I was stressing to relapse into psychosis
The abusive boss told me sarcastically “I’m the chosen one” and everyone laughed. Adding to my delusion
Thanks Marian, I appreciate your comment. I'm happy to hear that you were able to successfully manage your symptoms without medication. I think if people are able to manage their illness without medication then that's ideal, and I should have mentioned that. I'm not strictly "pro med", and only have my own experience with Lauren to go on here. For her, medication helps make the symptoms manageable.
I should have also been more clear that the purpose of this video was to address situations where someone is not well and also is not on medication. I think if a person is experiencing intense psychosis, medication is what can really help bring them back. And the faster they get treatment, the better the prognosis. - Rob
@@LivingWellAfterSchizophrenia have you guys tried cbd for psychosis? I found both while on seroquel and off of it, a high dose cbd tinctures or high cbd weed strain has been super effective in managing my delusions and hallucinations as well as the bodily pain in the fallout of a mood episode. Its s very useful thing to have on hand and use when needed. Even on pills my mood episodes would get severe sometimes, and that definitely helped calm me.
The only med that I ever too was Ativan. I used it to put myself to sleep for a couple of days when voices were literally making my head ache and I was paralyzed with fear and self-loathing. Yes it was lonely and as this was thirty years ago I had almost no support at all for my med-less choice. I was denied access to programs. I was called obviously deluded. It was all just more class system abuse and unenlightened science and misogeny. I could go on about ritualized Paternalist abuse of mental health for several volumes. Literature, science, social work, governments, the community. Fortunately the opposite also exists. You find a door in socialist democracies and then you begin to see that the issue is more the structure of health care. Designer meds that are only increased doses of old school drugs that may or may not be temporarily helpful will never redesign the health care system. Believing in meds as a critical aspect of recovery from serious trauma and psychiatric issues is deluded.
And don't try to slash my mental health off as minor. It was in no way minor. It isn't minor. But I live with my issues day to day, like anyone. My kids re great and have issues day to day. They are amazing. My partner in life deals or doesn't deal with his issues and we work it out day by day. And we are just not on the deluded spectrum.
@@halo8783 can you tell about your medication,can you tell about your symptoms ,about your routine please?
Just what I needed. I'm getting another meds switch...
Congrats to both of you!
Good information
Merci beaucoup pour partager toutes ces informations
A doctor took me off Klonopin cold turkey, omg it was awful. I got these headaches that felt like my head was shaking violently i couldn't do anything but lay there.
That was a nuts thing for a shrink to do. Change doctors.
No matter how good and beneficial a medication may seem I don't think it should be forced on an unwilling person. I'm more worried about being forced to medicate against my will than I am of any health problem. We all have different opinions yet we all think we are right all the time. It doesn't make sense, yet people in power decide that because they know best they can force vaccinations for this and that virus, or force people with mental health problems to take their meds.
I don't like the side effects like akathisia, tardive dyskinesia, dystonia, Parkinsonism, weight gain, higher blood sugar, and cardiovascular damage. They should not be able to force someone to take a medication that has these side effects. I stopped taking my meds over five years ago and I have not been hospitalized. Counseling was far more helpful for me than the meds. CBT, DBT, and Mindfulness are very helpful for me. They gave me coping skills that I still use daily.
@@andy-np2od I'm sure it helps your mental health just to have control of your life back. Best wishes to you.
Same opinion I left meds five months ago I had psicosis and meds made me feel like a robot and the side effects same like you. Im doing well for now but if its return Im going to take meds again . Im from Argentina.
@@andy-np2od I'm happy to hear you have been doing well, Andy.
@@silviamiller5332 I agree that you should do what makes you feel better. Only you know how a medication makes you feel. Also -- Lionel Messi is my hero!
I live with schizophrenia and you covered this topic well
At least she listens to you
Congratulations on the marriage!
the reason I refuse to take my antipsychotic meds is because they cause akathisia, tardive dyskinesia, dystonia, and they also cause weight gain, higher blood sugar and cardiovascular damage to me. I personally believe they do me far more harm than good. I was able to find coping skills through counseling with a therapist who was skilled in CBT, DBT, and Mindfulness. I am off my meds and have not taken them in over five years and have not been hospitalized in all that time. I am still mentally ill, but now I have coping skills that I use to deal with it.
how often do you do checkups with family doctor since you been off meds? I've been off meds 3 months now and dont plan on looking back. my psychiatrist took me off but my family doctor wants me to stay on.
Do you still see psychiatrist ? How long does a psychiatrist usually see someone that is off medication? My visits are pointless
You both are sooo awesome 😎 thank you for your informative videos!
What do you do with a forty-year-old son , stubborn, stubborn and unwilling to listen to anything, no medication, no therapy, starving himself, and having been to the hospital several times? And today decided with all the bad situation he has from schizophrenia, to be homeless. How should I as his mother help him? to be homeless is a mistake? And how do you deal with the situation?
Congratulations on your married 😊❤️
In our case, my sister intentionally refuses medication because the family wants her on it. She has admitted that she is spiteful and rebellious and will do the opposite of what others want from her.
How old is your sister?
your sisters smart. medication is only going to put ppl in early graves. help her in whatever way you can
Great inspiration in general and beautiful
Help... My loved one with (undiagnosed) psychosis+anosognosia wants a car and believes a car will be the solution toward gaining control over their life. In addition to general delusions and false memories, they often get what you'd call "episodes" when things are very difficult for them to process. I want to help them gain autonomy and trust, but I'm having trouble finding info on risks/guidelines for this.
To be clear:
- Risk: they could get into an accident (but how big is this risk?)
- Smaller risk: they could lose the car
- Upside: improvement to their life; independent transportation so they can maintain a job and have a life during winter
- Upside: less sense that they're being limited by their family
Congratulations on your marriage 🌸🌸🌹🌹💓💓💓❤️🙏🏻
Thanks for the explanation but what to do when the situation already escalated, they went to jail, due to their disassociative behavior and out of reality they are adults living in with you but refuse to get the help they need, any ideas?
Helping them manage side effects excessive sleep is a turn off. And help with motivation to work and exercise is welcome since we usually die from heart problems earlier in life
Wish there was a way I can reach out to you right now. I’m going through it all right now while my girl is off her meds. It’s hard and very stressful
My son is off his meds, hope your girl is ok now
Would it be accurate to compare an alcoholic to someone with mental illness? Hmmm. My sister has refused medication for 10 yrs. It is difficult to have empathy and compassion for someone who will not care for themselves. My sister has spent 10 years mutilating her skin (arms, legs, face, scalp). She is harming herself...does this justify for her to be on meds?
Sucks some have to be on neurologic meds all their life due to any mental illness such as epilepsy
I love Rob's shirt color....... I need a video of how not to take the delusions personally.
Hello Rob,
Let me just say that I take Dolmatil(sulpiride) every day with no side effects apart from a certain risk of getting Parkinson's maybe later and I will take this drug till the day I die - I'm 67 - when I know for certain that of my own three psychotic episodes and hospitalised May 1987, October 1988 and November 2007 I became psychotic in 1988 and 2007 for no other reason than that I had stopped taking the Dolmatil. It's as clear cut as that no ifs buts or maybes. I understand how someone would feel having side effects. I also understand we can feel well enough, like I did, with no symptoms whatsoever to think I didn't need the medication anymore.
It must be the most harrowing experience for you when Lauren is not well and trying to explain to her that she needs to take the medication.
When I was forcibly injected with a massive overdose of a drug called Largactil(chlorpromazine) in early May 1987 aged 33 the side effects were horrendous including drug induced Parkinsonism, a dramatic increase in weight from 161 pounds to 205 pounds and totally robbed of all my energy such that I was one of the living dead and only now today recovering and moving towards what might be more normal for me at the advanced age however of 67 such that I am eternally grateful to God that I'm still here and feeling as well as I do.
So let me just repeat what I most want to say or get across: if I stop taking the Dolmatil I will have another psychotic episode and that really will be the end of my life.
God bless you, :)
Peter Nolan. Ph.D.(physics). Dublin. Ireland.
Ps I donated another $30CAD to the $30CAD I had donated to start with because my total in €'s is only €40 and not very much.
Thank you, Dr Nolan. Your message needs to be heard. I wish you all the best!
@@cassandraotroy6325
Hello Cassandra,
It's just brilliant to hear from. You have just made my entire day.
:)
Peter.
@@peternolan814 Are you suffered from schzophernia?
@@aaymathebest4705
Hello aayma,
I had stress induced psychosis in April of 1987 and then hospitalised early May 1987. I had delusions of grandeur one of the many symptoms of schizophrenia.
I know for a fact that when I stopped taking the prescribed medication Dolmatil(sulpiride) in 1988 and 2007 I had two subsequent episodes.
I do not suffer from schizophrenia but I developed schizophrenia from extreme stress. Had I not experienced that extreme stress I would never have had schizophrenia. Other people develop schizophrenia but who have not experienced stress. They develop schizophrenia for other reasons. However when I had delusions I really had schizophrenia and if I stop taking Dolmatil the prescribed medication I will develop schizophrenia again for sure.
All the best,
Peter.
@@peternolan814 thanks Peter...can you tell ,Is there no permanent treatment if sczophernia?because I heard in hot countries,It's less and manageable.....and it has less side effects in hot countries....
Can you talk about supporting people experiencing homelessness with schizoaffective disorder?
How about not supporting going off medication?
What about responsibilities of a person with S-a disorder? Is their controlling others, oppositional behavior, narcissistic behavior and irrational/delusional/paranoid behavior to be accepted by those trying to help?
Is impulsive finding the keys and taking off driving the car ok? Is the common phenomenon of going off medication (often secretly) ok? There are a lot of reasonable questions about how much acceptance and suffering caregivers, family and others should have for episodes of the impulsive, delusional or other destructive behaviors.
I give my sister her medicine on time every day and trying to explain to her that this medicine is for her safety and health issues
You are a good sibling.
acquiescence is a double edged sword.
In my experience, going off medication does not lead to a relapse immediately and maybe if self-care is managed well, never will. I can be off medication for quite a while and only when I lack significant sleep-- multiple near-sleepless nights (due to a hectic job schedule)-- will spiral into a psychosis. I am currently off medication again due my issues with the expected 25 year (!) reduced life expectancy caused by antipsychotics, diabetes, weight gain and flattening effect. I'm prescribed Abilify and Lithium for Bipolar I (had been diagnosed schizoaffective and schizophrenia in the past).
There is huge reasonable incentive to get off of these medications. It is not a crazy or reckless idea at all. In fact, in Finland first episode psychoses are treated withOUT medication and 80% of patients go on to recover and NEVER have a psychosis again. That goes to show that there are likely lots of better treatments possible. I'd love to see an episode of you exploring alternative treatments for schizophrenia/schizoaffective disorder. Thanks for all you do! Also congratulations on your marriage!
Oh nice! Didn't know you guys are married! Congrats! :)
YOU WOULD BE SO MUCH BETTER THAN MOST OF THE MENTAL HEALTH WORKERS ACTUALLY YOU 'VE GOT SO GOOD AND REALISTIC WAY TO UNDERSTAND THE ISSUE MUCH MORE HONNESTLY TNAN MUST OF THEM DO ,THANK FOR YOUR TIME TO EXPLAIN, THEY DO NOT TALK TO YOU ,YOU SHOULD GET LUCKY TO GET AN "HELLO" FROM THEM ,THANKS FOR YOUR SUPPORT.
Ok...i use notes....when I get ideas..
Clozapine..is said to cause seizure and blocks a lot of receptors.
I have had sexual withdrawal.....like more arousal on lowering med
I think alpha receptors get unblocked.....too fast
Thank you
CONGRATS XOXO
You didn’t speak about the struggle of being on meds and dealing with the stigma of being broken, sick and/or crazy. Who wants that... 😒
I think it is very important not to look at mental illness being broken. Do not accept this stigma! We are people with altered brain chemistry, no different than someone with diabetes or hypothyroidism. Yes, we must work hard to manage our symptoms and report changes in thoughts or behaviors as they arise. Maintaining a consistent routine is imperative! Especially sleep and nutrition. Its best to have a trusted person to check in with, to communicate their observations to us.
But DO NOT give power to anyone who looks down on you!
are you on meds?
Thank you for making these videos, my brother was diagnosed about 15 years ago when he had a psychotic break (sorry if I am using the wrong terminology, I’m trying to educate myself).
I was 13 years old when it happened, he attacked my eldest brother because he thought it that my eldest brother was trying to control his brain with his cell phone. It was very Trumatic for me and also probably for him. He grabbed a knife and trying to stab my eldest brother. No one was physically hurt during this altercation. He was taken to the hospital and was monitored for a little while. They put him on medication which seems to work when he takes it.
Fast forward 15 years.
He currently is not taking his medication. My mother was the main person who helped him, and encouraged him to go to the doctor. My mother died this year. So I’m doing my best to educate myself on how to interact with my brother who is diagnosed with schizophrenia and how to be supportive for him.
For me I’m trying to get past the trauma that happened, and understand that he had a psychotic break and that necessarily doesn’t define who he is. However I am very cautious when I’m around him.
My question is, how do I respond when he starts talking about things that clearly don’t make sense. When he starts talking about aliens speaking to him, or weird things he saw on the TV which clearly I don’t know if they are on the TV or not. Or speaking nonsense that you can clearly tell is real to him, but not necessarily real to anyone else. He is extremely paranoid. What is the proper way to respond without looking at them like they’re “crazy”, And telling them they’re wrong. Because that necessarily isn’t the best way to go about it. Typically I just casually blow off whatever he says and just try to turn it into a positive or change the subject.
This is my brother and I love him, and I want what’s best for him. And I don’t want to add more stress and want him to feel safe around me.
Can you speak to someone who is included with mental health for support?
Hi, what would you do if the love one gone crazy and thinks that doctors and social services are EVIL and are trying to harm that person, moreover instead of going to doctor that person found cocaine dealer and gone crazy addicted to cocaine because it makes her feel confident and smart.
If taken to hospital gets very aggressive and scared at the same time. Escapes from waiting room and lives in the bush for few days.
What to do. How to help such person.
because my son suffers anosognia because of phycosis would showing him a video about people suffering from phycosis help his situation
Only when he's in a lucid enough state, I'd say... When he's in a full blown psychotic episode, reasoning with him or trying to get him to focus on a video, enough to actually understand the message, probably won't do anything good.
If he's having a good day and he's able to understand that sometimes his mind makes him believe things that aren't true, go ahead and talk to him about it.
You could use an educational video to get the conversation started, but most important is that you're communicating with each other.
It all depends on the age of the son as well... the approach must of course be different if he's 5 instead of 15, for example.
Videos like this one are a great ressource for you to learn more about psychosis. The better you understand his illness, the better you'll be able to understand your son and help him navigate the troubling waters of psychosis.
And never forget that you're not just 'taking care of a psychotic child' - you're raising your son!
I have schizoaffective disorder and I live a pretty normal life now (as long as I take my meds and talk to my psychiatrist once a week). It's not easy and there were periods in my life where things were more difficult, but my parents never gave up on me and now we've found the right meds that help me with my symptoms and i learned lots of helpful techniques to deal with my own mind in a more healthy way.
It takes time and effort from all sides, but it *is* possible to live a happy, independent and productive life with a mental illness involving psychosis.
Care taker fatigue.
What a load.
Wow. It is a real thing. Have been there and have learnt to take some time out to re-charge as if not I will be a risk of developing MH issues myself . In order to help my daughter, I need to take care of myself first ..... the oxygen analogy on a plane ..... put your own mask on first.
❤️❤️❤️