I found this forum a few weeks ago, almost by accident. One reading some of the posts, I decided to register myself straight away and join in. For the record, my wife has paranoid schizophrenia (has done for 15+ years), but has no insight into her illness at all. She currently takes clozapine, or clozaril - we’re in the UK, not sure if it has different names/brands elsewhere - we were told when so started taking it that is was the best drug available for someone like her.
Well, she definitely isn’t getting any better, if anything she is worse, and I have just about given up on her - we pretty much lead seperate lives anyway - me doing everything whilst she sleeps or talks to her “imaginary friends”…
So, to get to the point, a poster mentioned in the thread that I posted in about niacin and how it was working wonders for her son. She recommended a book - “Niacin: The Real Story”, which I bought and have started reading.
I’ve only got 30 or so pages in, but clearly the author is 100% sure that niacin is the answer to all our problems, and of course I really, REALLY want to believe that, but even on this site under the ‘Vitamins for Schizophrenia’ section is says about niacin:
“Once thought to manage schizophrenia, this claim has since been questioned.”
So, does anyone have any positive stories about niacin? If it does work, why isn’t it being shouted from the rooftops? Why don’t mental health professionals know about it? Have drug companies managed to persuade everyone that it doesn’t work and to buy their expensive drugs instead???
I guess it must just be another false dawn, anyone offer me any hope?
I’d look in other directions for help for your wife. Perhaps a different medication? Is she getting therapy? In the UK they have good CBT for Psychosis programs - try to get her into one.
You can read up on the niacin experiences of people on our main forum by clicking on the link below:
Hi, thanks for the reply. She has been on 2 different meds in the past: haliperadol and respiradol I think, so far nothing has really worked! As I say, she really doesn’t have insight - she refuses to admit that she has the illness to start with.
She has had CBT in the past - during one of the many times she has been sectioned, she was offered talking therapy recently but refused. She is her own worst enemy, and I have really given up! Unfortunately the mental health services seem to think that just supplying the clozapine tablets is enough, they really have no idea of her daily ‘life’ - despite me telling them.
I take it from you reply that you don’t think niacin is the answer then! I’ll take a look and the forum posts, thanks.
Just spent the last hour reading some of the other threads on niacin. Wow, I’m now even more confused!
My initial thoughts were that it can’t do any harm - it’s only a vitamin after all - but apparently it can damage the liver in large doses.
I suppose in a perfect world I would suggest to my wife that she starts taking niacin, perhaps after speaking to a doctor first, but I know she won’t even do that, so back to square one I guess.
Looks like that’s olanzapine in the UK, I’m not sure now if she’s been on that one. To be honest, my experience of all these anti-psycotics is that non of them really work from what I’ve seen. I appreciate that she may be worse without them, but non of them have made her any better.
I’m sorry to hear about your wife’s poor response to clozaril. While it hasn’t resulted in a miracle in any way, it is the medication that has worked the best for my son, by far. He too still hears voices and spends a lot of time just lying in bed. This at least is better than when his psychosis is uncontrolled.
I continue to hold some hope for future treatment developments that will bring more improvement than what is currently available, and for now find myself accepting whatever relief clozaril brings.
I agree. It can be disheartening. I find they are somewhat effective, but not completely; my sister’s call their medications a “cocktail” mixing to get the best outcome, of course this done by their psychiatrist. Keep up the good fight, you are not alone. I trust you will have inspiration on how to proceed next. Your wife is blessed to have you.
I don’t understand how she’s been on only one medication for 15 years and in that state. Take her to a psychiatrist and demand a new medication with a medium or high dose to stabilize her. I also recommend taking Sarcosine, it’s supposed to help with mood, memory, restoration of brain cells, cognitive function, and motors skills. I think it’s helping my fiancé a lot and he really enjoys taking it. The Seroquel (Quetiapine) 50 mg isn’t doing anything, but along with the 3.5 g of Sarcosine and Hydroxyzine (Vistaril) 25 mg I’m seeing some improvements.
Clozapine is the one she is on now, probably for the last 4-5 years - the other two I mentioned she was on previously from her original diagnosis.
She was (still is?) a very intelligent person, infact her parents both worked in mental health services here in the UK, she is very aware of how the system works here and says what she needs to stay out of hospital. I think she has one appointment with her psychiatrist every year, and as far as I can tell, she just smiles sweetly at him, tells him everything is OK, he ticks all his boxes and they both go away til the next year.
I have completely lost faith in the system, and I’m usually too busy to try and sort this mess out. When I started reading about niacin, I thought “wow, maybe this will be the answer!”
I’ll look into Sarcosine, but I’m wary of the drug industry as a whole and would prefer it if there was a more natural solution.
I’m not sure if it’s because I’m going blind and I wear glasses, or maybe I’m just reading too fast, but I only see one medication mentioned and you put two different names for the same one. One appointment a year? That is completely ridiculous. Here, you get an appointment every month, as you get better every 2 months, and then up to 3 months – never a year. You need to find a different psychiatrist for her and every time you she has to go to them, you need to go with her. They will lie to them and pretend like it’s all good if you’re not there and even if you are they will try to deny it and then admit to some things. Sarcosine is a natural chemical in your brain (nootropic).
The medication she is currently on is clozapine, or clozaril - don’t all these drugs have more than one name, or are sold under different names?
I’m not sure it’s that easy to get another psychiatrist under our system - I will be writing a letter of complaint to the mental health trust shortly, maybe that will give them a kick up the backside.
I don’t know your situation, but when you have someone (my wife) who DOES NOT BELIEVE she has a mental illness, it is very, very hard to do anything about it, and I have just been worn down over many, many years to the point where I just can’t care anymore. I know that’s not helpful to me, to her or to our 13yr old son, but that’s just how it is.
Yes, but you didn’t mention the other two she was originally one, just those, which is what she is currently on. I get it, I completely get it. My fiancé has difficulty believing it too. Last week he got a rush of anger and moved the whole bed to the next room when he was reading about his Schizoaffective Disorder and refused to believe he had Schizophrenia or Bipolar Disorder. I’m not sure how helpful writing a letter will be, but I suggest you do an online search and find a new psychiatrist for her. Maybe you can call her psychiatrist’s office and say you need an appointment sooner. As a last option, you can hospitalize her and say her medications aren’t working. Get judge with a court order to keep her there for a couple of weeks or months so that she can get better and the help she needs. Contact her parents if needed. She needs help and she’s not going to get it if you wait around for someone else to do something. My fiancé was court ordered to stay in the hospital for 3 months and he got early release, but he finally got on medications for the first time.
I mentioned the two earlier - haliperadol was the first one, the other I think was respiradol, but not sure, it could have been olanzapine, it was I long time ago!
The only way she could be hospitalised is by the order of 2 psychiatrists who agree that she is either a danger to herself, or others, or if she is refusing her medication, and she’s not doing that.
She’s been hospitalised (sectioned) 5 or 6 times over the years, it only ever seemed to help the first time or so when she was completely manic and unpredicable and a danger to herself and our unborn son, so I don’t think that’s even an option, especially with the state of our mental health system!
I appreciate your comments, it’s good to hear other peoples opinions on the situation.
Yeah, I remember those two you mentioned, but I swear I can’t find them now – not sure if my eyes are just skipping it since the spelling is wrong. And anytime. I never knew how shitty the mental healthcare system in Britain was – and yet we still complain here.
It sounds like you are fed up. She is not refusing to admit she has an illness; lack of insight or anosognosia is a symptom of the illness for almost half of the people who have it. She really does not believe for one second that she needs help or medication.
There’s no way someone in the US could be on clozapine without monthly blood tests for a side effect that happens to 1% of people who take it. Maybe the UK is different??
In my experience, many of the anti psychotics take up to 6 months or more to see the full benefits. The “therapeutic level” needed for the best effect could be tricky to pin point. It took my son a year or more on clozapine before his delusions, voices, and visions finally subsided…some of them were gone by 6 months. I hope you find the med that works for her. Best wishes.
I have been giving my son 1500mgs of this daily along with his meds. It has worked wonders for his mood and energy levels. I give him two 500 mg pills with his morning meds and one 500mg pill with his evening meds. Its also seemed to help him with his weight as well. Perhaps he has more energy so he is more active.
It definitely won’t hurt to try it. He has been more like himself than he’s ever been since diagnosed. I wouldn’t just try niacin alone, but taken with the other meds, its been amazing. I recently found a single 1500mg I can give him in the morning, instead of the three huge capsules. Best to your and your family on this journey.
Hi Hereandhere. She does have the monthly blood tests to keep a check on the white blood cell count (I think that’s right!), that as far as I know is carried out by a nurse and unless she mentioned any problems to the nurse (which she wouldn’t), then it’s just a formality to do that test and supply the tablets once the test shows everything is OK.
AllthingsRpossible - did you consult a doctor before doing this, or did you just do it? I’ve read that the ‘flush’ you can get with niacin can be alarming/worrying for some, but other than that it should be safe just to start on it.
