Hi Kevin Ken’s mum here. I haven’t been visiting this forum much lately as I feel so sad hearing all the awful stories that people are telling here. In answer to your question ‘have drug companies managed to persuade everyone that it ( niacin) doesn’t work?’ I regretfully have come to the conclusion that they have.
My son is now into his second month of Niacin and Vit C ( he tried to commit suicide with an overdose of clozapine on 6 December last year ) . He continues to improve and becomes more sociable daily. We had a brilliant Christmas break - his extended family were very impressed. He is still a bit late getting up in the morning and getting going as he is prescribed 400mg of clozapine at night but I believe eventually we will get him off the clozapine but he will continue with niacin and vit c in large doses. Someone put a very good up- to -date video on orthomolecular medicine here about categories of schizophrenia. The doctor on that video believes the sz should be tested ( blood tests) before you begin therapy with vitamins to check which vitamins they will respond to. The clinic is in Chicago but I’m sure there must be something of the sort in the UK. We are fortunate in that my son seems to be part of the 40% of sz who respond well to niacin.
Right now he is sitting up well past his bedtime singing along to music videos LOL Today we went to a nearby city to check out the park. We’re going to watch a cricket match there NZ V Aussie on 5 Feb - I gave him tickets for his birthday. Next year I predict he’ll be taking a friend along instead of his ol’ mother
I’ll look through the posts here and see if I can find that video - it was posted by a mother who had her son see the doctor in Chicago - I’ll repost it here when I find it
Did you finish reading the book? Many other uses for niacin in there. Chin up one day you’ll be writing good news too
From what I understand and Dr Andrew Saul may have written something about this -any cases of liver damage were caused by giving slow release niacin ( non flush) not straight niacin that will initially make you flush but after a few days the body will adjust. Makes sense that a slow release will stay in the liver longer whereas a flush puts it into the system straight away.
Hi KensMum,
Thanks for replying. Yes, that’s the problem with these forums, not much good news, unfortunately!
Thanks for the info on your son, good to hear he seems to be improving with the naicin, long may that continue! Didn’t know you did cricket out there, Lol!
I’ve only got about 30 pages into the book, at that point I posted this question on here, and the feedback suggested that on the whole naicin was not the panacia this book made it out to be! So I haven’t yet gone back to reading the rest of the book, plus I’m still trying to get a response from the mental health team responsible for my wife to see what they plan to do moving forward.
I generally avoid this part of the site, but I’m pitching in as a med-compliant SZ. I’m very high-functioning in that I’m married, have a kid, have a career, and have mostly successfully been dealing with my condition for the past two decades. (I’m stable enough my docs signed off on my medical allowing me to drive a school bus). That’s the background.
I have taken very large doses of niacin over the years on its own and also as part of weight-lifting regimens. I have not ever noticed it making a difference in either my positive or negative symptoms. My ongoing recommendations for the best possible recovery are as follows:
- Take meds as directed. Stick with them long enough to give time to adjust to side-effects.
- Be competely open and honest with treatment providers. Hide nothing.
- Take advantage of whatever therapy is offered or you can afford. If nothing else, do related workbooks.
- CBT. Get access to it if you can, get some workbooks and put together your own program if your means are limited.
- Set small, achievable goals. Hit them and set more goals.
- Keep a recovery journal. Make notes of all setbacks and achievements. Progress is so incremental with SZ that sometimes it takes months to go from reading a sentence to reading a paragraph. Your journal (which you may need help with at first) is how you prove to yourself you’re making progress and develop motivation to keep going.
In terms of supplements… The ONLY thing that has worked for me is sarcosine. The stuff you see advertised all over this site. I get mine from BrainVitaminz. It really does help with negative symptoms and cognition. I have a huge stockpile now to make sure I don’t run out because – at least for me – the difference is so noticeable when I’m not on it. Finally, I have diffusers loaded with rosemary oil running everywhere. Studies prove that rosemary scent improves functional memory and I still haven’t gotten all of that back (I schedule personal hygiene in Google Calendar. Seriously.)
Anyhow, that is what is working for me. I went from being a ‘hopeless’ case a quarter of a century ago to a productive member of my community now. I still have some positive symptoms and I need my meds, but things are working out pretty well.
Cheers,
Pixel.
Thanks @pixel! Such good input. And… I have just been recently thinking about a diffuser for my son, now I know what scent to try!
Hi Kevin, I’m also in the UK, my wife and I have a daughter with schizophrenia. She has been on many different meds over the last 14 years but about 10 years ago discovered that Abilify (aripiprazole) took away enough of her positive symptoms, to allow her to fight her negative ones, with a bit of help from an anti depressant. She’s recently had a relapse and is back in hospital, but that’s the normal course for this illness.
We are also looking at whether any supplements are worth considering, but it sounds like your wife needs a better anti-psychotic before that. We found that you have to keep pestering in the UK, so make daily calls to her doctor, and if she has a CPN, daily calls to him/her. If things get unbearable, take her to A&E or you can even consider 999, which we have had to do on a few occasions when our daughter was particularly paranoid. Lay it on thick, as we find the health authorities will try to make you do the work instead of rightly doing more themselves.
Get in touch with PALS as they can help you fight your corner, as can your local MP.
As your wife is in denial about her illness, insist that she has her medication by monthly injection, then she can’t stop taking any pills she’s been prescribed, which is so often why things go wrong.
My son likes lavender, which is supposed to be relaxing.
And, they have a very nice Glade or Airwick plugin that’s lavender & chamomile, but now I’ll have to find some rosemary oils for the more traditional diffusers I have.
I buy those live Rosemary codes at Christmas because they smell so good, but I can never seem to keep them alive.
My son’s been taking a lot of baths to relax too. I’ll see if I can’t find something with Rosemary that will work with that too.
Hi shop1uk, thanks for your reply. I have lost contact with her psychiatrist, CPN, infact anyone who is involved in her care. Partly my fault, I know, but I’m not one of those people who can just keep on and on at someone if they’re not doing their job properly, especially as I’m doing this on my own.
Just to be clear, she is compliant - she takes her tablets everyday - mainly because a homecarer comes round in the evening to make sure she does - at first she was on a depo injection as she refused/forgot to take the tablets.
Also, there’s no reason to ever take her to the GP or A&E - she does spend a large part of the day sitting on the loo talking to her ‘friends’, but she is never negative, she’s no danger to anyone, she just doesn’t do anything! She is completely devoid of any emotion, except when our teenage son is out and every 5 minutes she gets worried and wants me to go and get him back! When she’s not sitting on the loo, she writes me notes about the police/army/prime minister/lords/etc saying she’s been given permission to move home - which is all she ever wants to do, move to another town - probably to escape the mental health services.
I’m in the process of writing to the head of the local psychiatric services to ask them what they think they are doing, but to be honest, my hearts not in it!
Hi Kevin99, a lot of what you’re saying is very familiar, we’ve experienced some of this with our daughter.
I would hazard a guess that your wife’s medication is dealing quite nicely with the positives, but failing to deal with (or even adding to) the negatives.
We persevered for 2 years with our daughter, with various medication cocktails, noting her moods,side effects etc, before we were satisfied that she could lead a decent life. She’s been doing that for 14 years.
Unfortunately we recently had a very tough battle helping her through the DLA to PIP appeals process bureaucratic minefield. The worry of it affected all of us, but it pushed our daughter into relapse, so we’re now back at square one, trialling the cocktails until we agree she’s well enough to be released from hospital, back into our care.
If you’ve lost contact with her mental health team, you can re-access the service through her GP.
Sorry for the delay. No, I didn’t consult the doctor before hand, but did tell him later. He said the supplement would not cause an issue with the other meds my son was taking. Also, I found a flush-free version of Niacin on line at Swanson Vitamins. I pray all is well.
Hi Kevin: I read your story. I am sorry for your anguish with your wife’s illness and I admire your commitment… As my son has suffered schizophrenia for over 15 years I was hoping you had a solution with Niacin? My doctor recommended it to me in rather large doses for my hereditary cholesterol. The only side effect I have had is severe joint pain. I’m a very petite person and believe others would react better on Niacin. Basically my stress levels are so high taking care of him alone I have had a few minor strokes and a heart attack which I am far too young too be having? . My son would never volunteer to take any vitamins as that would be scary to him. He has been o the same meds for almost 20 years and as he gets older he get worst, unless he continue to go to a psychiatrist which he refuses to .I can’t even get him to the doctors. anymore.
I am curious if you found out any other information on Niacin or if your wife tried it? Someone also told me vit B6 would help but I never found any information on this.
Thanks, Good Luck