Lack of insight is called agosognosia - it’s due to changes in the brain.
Stroke victims suffer from it as well.
It’s not that they refuse to believe they are sick or are in denial - they physically can’t recognize that they are unwell, even if they know they were sick in the past or can identify the same symptoms in others. It’s not a choice - just like if you were blind, you couldn’t suddenly choose to see.
It’s very frustrating, but accepting that it is not within their control makes it easier for me to accept and deal with.
Hi Liz, yes I was told that clozapine was the best medication, as well as the last hope, when she went on it about 4 years ago! Previously it was respiridone, olanzapine, haliperadol I think over the previous years, none of them have worked!
I will need to read up on the niacin, but I had a quick look at our NHS website here in the UK, and it seems to suggest that most peoples daily niacin requirements are met in a good diet of dairy, meat and vegetables. Now here diet is not the best (lots and lots of sugary food/chocolate!),but reading that didn’t give me much confidence that just buying niacin supplements will improve things. I guess I will need to buy that book and see for myself what it says.
My daughter is 33 years old and there are many times she’s engaged in activities such as long walks, sewing, knitting, baking and playing with her children. However there are also long periods where she’s withdrawn, uncommunicative, catatonic, aggressive, manic, paranoid, hyper sexual and hallucinating. I’ve come to understand this is her illness – schizoaffective. I’ve come to understand just lately that this will never change and learn to accept who she is. It’s not her fault she has this illness. Accepting her illness 100% can reduce stress and my 100% acceptance of her illness helps my daughter accept herself as well. My judgement makes her feel less than. I hope this helps but that is not to say I don’t struggle with anxiety, anger, sadness and grief.
Its been over 20 yrs for me now, reading your message brought back a lot of memories and some things are still happening. I remember when my son wouldn’t leave the house without me, if I had to go to the town centre for some reason he would then insist he came with me. He would refuse to go on the bus, so we walked both ways, about 5 miles. He also used to beg and plead with me not to go to work, I thought he was afraid to be on his own so used to get a relative to stay with him while I went to work. Much later down the line I discovered that he thought someone was going to kill me, not that he was afraid to be on his own. So he was actually trying to protect me.
My son also used to come into my room several times a night, he used to barricade his bedroom door with furniture because he thought someone was going to get into the house and kill him and myself and his dad. If he heard the slightest noise during the night he would be out of his room in a flash, come to my room to check us out then go down the stairs to investigate. Again he was trying to protect us. This went on for so long, and me being woken 6-7 night I wasn’t sleeping that well, I was going to work with sties on my eyes.
He was much the same as your son, would not get involved in social activities with the social group, this was through a local mental health group. The reason he said he refused is because he wanted to be with “normal” people and not go somewhere that was labelled and specific for people with mental illness. Although he would attend mental health related conferences with me, and I noticed he felt more comfortable with people he knew had similar experiences to his own. He just had a problem with the local group, which is obviously linked to stigma. I am telling you this because it could be a reason behind what your son is doing which doesn’t make sense right now, as it didn’t make sense to me.
My son is much better now, but it took a long time to get to where he is now, although he still wont socialise outside of family and still lives with us. He also sleeps a lot still, but also goes out with his dad and his uncle 4-5 times a week. I know its hard not being able to see into the future, or what the outcome will be. The way you feel is quite normal and understanding.
As for the depot injections I do know that the effects start to wear off before the next dose is due, at least a week before. If you think about it try to take note of any changes in him when he is coming up to being due his next shot. This might explain some of his behaviours, like suddenly not going out to walk the dog with you. Although I would add that upping the dose of these medications does not always improve symptoms, but it does make the person want to sleep more.
Your not alone. It is good to hear this is common with schizophrenia. Hard to accept, because we don’t think the same. I’m sure the medication slows them down quite a bit. But better then the way they are on no medication. My son has had his ups and downs since April 2012. And finally on this new medication he is on and liking his therapy councillor have seen improvement. But still does not like to be out without us. Has taken up guitar and seems to like it. Use to play drums and just stopped playing with them. He does sleep more, but I don’t know what time he goes to bed since be has a studio apartment in our house. So we both have our privacy. One day at a time.
Hi Kevin yes my son has been on all of those too. I think when the doctors tell us when they prescribe these drugs that ‘there is no cure’ we don’t really believe that they believe what they’re saying.
The question we should be asking them is 'what are these drugs for then?. In the usual circumstances we take drugs to cure or at lease alleviate symptoms of a disease.
The reason for the drugs is - if you got an honest answer- to damp down the symptoms by putting the patient into a semi coma/ walking zombie state. Clozapine is just a very effective way of doing this. Biggest problem with this is that most sz are intelligent people and become very distressed with this situation. In a sz if they get stressed they produce a natural form of LSD in the brain - hence more hallucinations and delusions- therefore need more drugs like clozapine - therefore need more doping. You will notice that if the sz patient gets paranoid the doctor will always want to increase the dose. The root cause of the paranoia is never addressed.
When you read the book you’ll notice that a lot of other symptoms of a lack of niacin are in there too. For example it is a proven cure for alcoholism which is a disease of addiction. Start taking the niacin and you’ll probably want less of the junk food or whatever else you’re addicted to.
The quickest way to access the book is to get it on a cloud reader like Kindle. You can then start reading it straight away.
Thanks for all your info. My son takes Olanzapine dissolves on his tongue. Because he seems better with this pill and side affects and because now I watch him take it.
He does same as your son and doesn’t socialize and has a lot of spare time on his hands. We go out practically everyday, to break it up. The counsellor says he needs to get a hobby. Mike likes him and that’s a plus, sees him once a week. As you say one day at a time.
Thank you, I agree. I also have to be in the right mindset to do something. Some people tell me to “make him” and others tell me to just let him be.
So hard to know what is best.
I don’t know about your situation, but for ours, there’s no “making him” - we have to use very gentle persuasion over time and take advantage of the smallest opportunity whenever it presents itself.
It can be so slow sometimes that it feels like letting him be, and some days it is so we can all take a break.
He says that the lack of dopamine makes him suicidal. He says he wakes up with leg cramps that hurt so much he cries. He doesn’t like the sexual side effects. I think 20 mg zyprexa is too much and asked if he would lower that and continue on his nutrients. I am also going to start niacin.
I make my husband take magnesium for leg cramps too, but I’ve also read that people should take it so that they absorb calcium better instead of overdoing it on calcium supplements.
You sound like me! LOL. I remember making my 6th grade math teacher angry because I asked her how we would use what we were learning about as adults. She didn’t answer my question, but reprimanded me for being disrespectful. I just wanted to know!
You’re fine with the U.K. words. I understand the differences LOL! My son also stays home doing nothing besides smoking and guzzling soda straight out of the big 2 liter bottle and listening to music which is the only interest he’s maintained from “before.” He has severe social anxiety and won’t go out anywhere unless he absolutely needs to or if I ask him. The last time he went anywhere except for the mental health facility where he gets his invega shot was to my brother’s house for dinner because my sister and her newlywed husband were leaving for a couple months. Even then, he ate very little and spoke less, with frequent disappearances to the guest bedroom where he lay in the dark. As we were leaving, everyone said how great he was for being there and that he seemed so much better. But to me it only reinforced my despair for him and I cried for two solid days after! The laying alone in a dark bedroom in a home full of love for him made me so sad. I can only imagine how he must have felt as he tells me next to nothing. This is a wonderful community and I hope you and your wife find peace and happiness when it is possible. As for me, I live with the constant knowledge that my son has an irreversible brain disease that has taken him away, and life as we knew it is gone. I’m trying to accept this new reality but truth is I think of nothing else 24/7. Everything else takes a backseat. I’m hoping some day my son will come out to see me where I live, which is only a 15 minute car ride away from where he lives with his dad. He used to drive out on his own “before” but now won’t drive, period.
my son was diagnosed this summer. Was in Belluvue Hospital for almost 2 months. They had such difficulty finding a medication that they were allowed to give. He left on a Haldol shot lasting a month. Home now, and refusing meds. Is willing to Skype with Ayurvedic practitioner, on herbs, no gluten or casein 9my mom had celiac disease and there is a link with schizophrenia and celiac sensitivity. I am plying him with Sarcozine, Omega 3s. especially, and Niacin, zinc in foods, food based vitamins and herbs from Ayurvedic practicioner. Ayurvedia does a lot with the notion of inflamation, and maintaining a calm system. Also went to a Functional Medicine psychiatric nurse practioner who suggested, full plant based protein and Omega 3s and B vitamins.
When he takes niacin I notice he has good energy that day and goes out to see friends. No sign of positive symptoms yet. But definitely negative symptoms sometimes keep him disengaged and in his own world.
So far so good, it is only a week since being off all meds.
Thank you! Here in CO it’s a 6 month wait to see a Functional Medicine Nurse. I’m up for trying, however, my son is not willing. He’s taken Chinese herbs in the past which helped a bit. Any advice on how to get him to try the niacin?
I give my son a chore to do every day (Mon - Friday) this is his contribution for his room and board. Sometimes he does the chores sometimes not. I find it easier for him if I give him one versus a few. My son barely gets out at all these days.
