Can Med's suddenly stop working?


Hi, the side effects on zyprexa have been dramatic weight gain, sleeping a lot, like 10 to 12 hours a night and he has lack of motivation. and social isolation which most likely are from the illness.


Yes they can, or they weren’t exactly right to begin with. The way the illness effects people can change too. Living, age and experiences change all of us and this can impact the illness. There is a lot of trial and error with medication. It’s frustrating for all involved and can make you feel that any progress has been lost, or you’re going backwards. She might feel that nothing will help, so the hard part is to get her to persevere and understand it might take time.


Hi there, Zyprexa is a good med take time up to 3 month to really see good result. my son take it. at the beginning I thought it wasnt working but I talk to his doctor to increase his doses… 2 years later and he doing really well. also sometime if they are using drug or drinking alcochol that have negative affect on them will affect on how the med work… . Now my son only take a injection of Invega Sustenna 234 mg every month. it work for him


Because some side effects abate with time. My son has been on Abilify for two years. For the first eighteen months it stopped all his positive symptoms completely and negative symptoms have receded gradually (his cognition and motivation have vastly improved) until he became able to lead a completely ‘normal’ life. The thing he hated was that he would need to sleep a lot. But that side effect has gone now while the good effects have stayed. Patience works sometimes.


Hi Hatty. What does your son’s “normal life” looks like? Does he drive, have a job? Does he have friends he socializes with? Is he able to put aside delusional thoughts? I’m wondering what’s possible…


He lives in London so he doesn’t drive (neither do I). This is normal in the UK in his age group. I know that’s crazy for Americans (an American friend of mine once gasped at the fact and said, ‘Can you even READ?’) but it’s normal here. So he uses the bus and underground system here. He has been on the UK equivalent of Disability since 2013, when he was diagnosed. He was given a ‘council flat’ - a very nice one - so he has lived on his own there for years now. He decorated it and put new floors down and furnished it himself (with financial help). He lives independently without any problem. Just over two years ago, because he was only taking his APs sporadically, he became psychotic again and he was detained under the Mental Health Act for ten days. Since that time he has been consistent about taking Long Acting Injectables (Abilify) and over that two years his motivation has steadily improved and his cognition has improved too. For the ten previous years he had a very spotty job history - all low-skilled and hourly paid, zero-hours contracts, etc (but unfortunately this is also pretty normal for his generation in the UK - it’s a big political issue and was one of his sources of stress). He did several vocational training-type courses, some of which he completed and some he didn’t. His self-presentation and his general behavior is what makes his illness ‘invisible’. He’s quiet but friendly and well-mannered (and he doesn’t get breakthrough symptoms, or if he does he doesn’t show it). He has a small number of friends, his own place, he takes care of his appearance and so on. I would say, like other carers here, that I keep seeing improvements, year by year. As I said above, he recently applied and was accepted to university. I found out that he could and how much financial support he could get, and he moved like greased lightning to get his application in on time, plus references etc. Then he got onto the applications for financial support and so on and now he’s studying to prepare. I was amazed because I was thinking that he still had quite a bit of avolition- so there was another improvement I hadn’t perceived.

I have to say here that when he first went down with florid psychosis I was desperate, in floods of tears, convinced I was going to end up with an untreatable, unhappy, homeless vagabond son. I was so desperately sorry for him. At that point I found this site and read about the ‘Recovery Movement’ - the idea that people CAN and DO recover from schizophrenia (WITH the use of appropriate medication) and that the single biggest factor is HOPE so carers and medics need to convey that information and that hope to the sufferer. So right from the very beginning I have been telling him he can recover. I also used to go and read the Diagnosed boards, where I saw how very lovely most of the people there were and how they felt, struggled and improved their lives, so both these sets of boards have been a huge source of psychological support to me over the last five years.
I know that my son may not succeed at university but I also know it’s worth a try. I dipped back in here because I am feeling some trepidation at what might happen if he doesn’t. Anyway, yes, our lives feel pretty ‘normal’ to me now.


Thanks for your reply Hattie. The progress your son has made is absolutely astonishing. I can’t even imagine my son ever getting there, unfortunately. I hope things go OK with the upcoming college plan. Good luck to you both.

PS…It’s not an outlandish thought that a person living long-term in a large city, like London or NYC, would rely solely on public transport. It makes perfect sense to me. I’m just so impressed that your son can manage it all.


I have to say that the Early Intervention units in our National Health Service, or at least the two that my son has dealt with have been spectacularly excellent. They really do a total support system. The fact that they managed to get him into very good housing and on the right benefits etc straight away, plus the respect and dignity with which he was treated meant that he really engaged with them and has mostly cooperated with treatment. At one point I suspected he was suicidal (I was not in the UK at the time), I phoned his psych nurse and told her, and when he didn’t turn up to his appointment later that day, she and the psychiatrist actually went round to his home to find him! (He was really mad with me for telling them but I wouldn’t apologize. I told him I want him alive and I’ll do everything necessary to keep him that way!) He was threatened with a Community Treatment Order after he was detained so they’re not all warm fuzzies but basically they do their early Intervention and they have certainly done it well in our case. So, we have been very, very lucky with medical and social support.


We are rather envious of your mental health care in the UK.

A controversial tweet (sp?) went around our country recently claiming that the UK didn’t have any “school shooters”. The tweet went on to say only people in the US blame such things on mental illness.

Someone responded that its because the UK responds with actual help when a person has mental illness. That tweet did not make the rounds like the original tweet. The overwhelming majority of people in our country are clueless when it comes to how brain disorders are handled here.

A British Columbian, Herschel Hardin once said "The opposition to involuntary commitment and treatment betrays a profound misunderstanding of the principle of civil liberties. Medication can free victims from the illness - free them from the Bastille of their psychosis- and restore their dignity, their free will and the meaningful exercise of their liberties.

We are fighting a major battle here to get laws that allow for treatment of our family members who have no way to understand they are sick. Anosognosia being a symptom, might be the key.


I think it’s both. Obviously not all shooters have SMI, but some of the people with SMI shoot themSELVES not others, which I wouldn’t want either. So, yes, fewer guns and more free healthcare adds up for us!


Of course, all of them don’t have brain disorders and some of them clearly do.


When the families of the shooters with brain disorders come forward and share their many attempts to get help, I believe them.


Yes, the guardianship and confidentiality issues are problematic here too. We have had some incidents of murder by people with psychosis but it really is true that with a knife you get to murder one person before you are stopped, not twenty. Also compulsory treatment seems to be more widely used. We are fairly individualistic in the UK but individual freedom seems to have the status of the greatest idol in the US. (An outsider’s viewpoint, of course)


Yes, the Bill of Rights in the US Constitution -as it was judicially reviewed in regards to mental illness in the 60’s- does limit us incredibly when it comes to getting our family members help they do not want. For this, we have to look to our founders and their unhappiness with British rule and some lawyers who won some impressive battles on behalf of some people with brain disorders who did not want to take meds and did not want to be institutionalized.

The parents in our Family to Family class were both murdered, within minutes, by their son who had scz. He was using a sledgehammer. The officers who first arrived on the scene said they didn’t realize they were looking at people. It was close to Halloween, a holiday here where some people decorate their homes - sometimes gruesomely, though gruesome is not the norm. The officers thought their bodies were Halloween decorations.

We looked around our house after that event. We saw a set of marble candlesticks, kitchen knives, golf clubs, croquet mallets, well pretty much everywhere we looked we saw weapons - for those who know our story - we did not even think about the big rocks I used outside in my garden. After that event we looked around our property with all the large rocks, bricks, hoes, shovels, hammers, screwdrivers, the car tools…you get the idea.

I am not a fan of guns, not in the least, they scare me to death. My son has purchased guns - we are not gun people- but he was afraid of his neighbors and thought he was protecting himself. We managed to get those guns away from him and felt safe for a while as he had a diagnosis on record with the government and was not able to buy guns. Now the laws have changed. Sigh.


This call for speculation on how many single deaths we have in this country compared to the total of mass deaths - but I have no idea. Dr Torrey probably has an idea. He works hard to bring this issue to the forefront and get our laws changed.


Yes, but assuming both knives and guns are freely available, you get both types. We don’t often get the gun type (except very occasionally).


Interesting consideration, when I visited Culloden Battlefield, an older Scottish gentleman (not one of the docents) suggested that the Scots had a big role in the second amendment in the US Constitution (keep and bear arms). He said that after Culloden when the English tried to eliminate the Highland culture and language, the Scots were not allowed to own guns. Many Scots emigrated or were emigrated to the Colonies in the now US. The gentleman believed the Scottish influence here against the English played a role in the right to keep and bear arms. He may have been speculating, my US history isn’t all it could be.


That is interesting and probably true. Ironically it was a mass shooting of Scottish children in Scotland by a Scot that led to the almost total outlawing of guns in the whole of the United Kingdom.


Thank you Hattie and Hope for your great insight into the gun and forced treatment debates! I’m all for individual liberties and rights, but when a family has SZ it blurs what I thought were black and white issues up until my son’s SMI began when he was 19 and in the prodromal phase - and then full blown SZ/psychosis last year when he turned 26. I really think the MI laws have to be tightened in the US to effectively remove threats of psychotic citizens if they show signs of violence - especially in this last school shooting when the police were at that boys home over 30 times prior to this incident and they couldn’d/didn’t get him into forced treatment per the Baker act. It’s very disheartening to me because as a parent of a SZ son it was the hardest thing for me to do when I had to force his treatment a year ago as I truly was frightened of him in the state he was in.


Congratulations to you Mary for getting your son into treatment. We have still failed with our son, but are still hoping. He now lives in an area that will make it easier for forced meds. Same state, more progressive county.