Niacin and Paranoia and Other Mental Illness Terrain

Monday, 17 September 2012

So I've been continuing on trying to treat the pyroluria that I received a diagnosis for about six weeks ago.  Six weeks ago?  Is that all?  Seriously, my conceptions of time are all swirly and weird at the moment.  Days feel like weeks, hours feel like minutes.

As some of you know, pyroluria is related to schizophrenia.  Some estimates are that up to 30% of schizophrenics, 40% of people presenting with psych issues, 25% of disturbed children, 40% of alcoholics and 10% of the general population have pyroluria.  The link between pyroluria and schizophrenia is that in both cases the body is unable to excrete copper, and so it builds up.

Well, I've been excreting copper for months now.  Far infrared saunas, chlorella, and the B6 and zinc that naturally displace copper levels mean that I can't seem to stop now, even if I want to.  It's been particularly unpleasant.  The mood swings that come and go with me lately feel totally extreme - and they're much better than what they were.  But when they come upon me, I just turn into someone else.  I don't feel like I'm going to do anything crazy simply because my desire to be dead is overrridden by my apathetic inability to actually go ahead with it ... and by a thin, reedy voice somewhere 17 feet above me which says, "Remember ... remember, this is not really you.  This is what is coming from you, and it will pass."

The Witness is my lifesaver. 

It's a particularly scary situation to be in when you are become overwhelmed by ... how do you explain that feeling?  You're definitely paranoid.  You're shutting down.  You don't feel able to speak.  You need to curl up in a corner and sleep.  Every phobia you've ever had (and you've had plenty of them, none of which you have shared with anyone else because they're, well, stupid and ... well, phobic) is out and floating in the air.  Everything feels sinister and nasty.  You feel wrong.  Like you're a contagion that you don't wish to spread to anybody else.  Like everyone else must hate you because you are an ugly piece of shit on the outside and you're an ugly piece of shit on the inside. 

That's a little of how it feels.

And then there's the times when you're not and squeeeeeeeaaaach, and you're back in the body you're familiar with, and you feel good, and you're noticing improvements even.  And there it is, The Beautiful again, and you're a part of it, and there's beauty without and beauty within and you get to be all mystical again about how it just so feels like we are all part of the same thing, and that that thing is beautiful and that everything is fine, totally fine.  And then you go and write things and play with paint and read and work and do uni stuff and everything is all normal again.

It's particularly lonely when you speak to people about your pyroluria experiences and you know that not only don't they understand anything about what you are suffering through, but you can see them diminishing it before your eyes because it makes them too uncomfortable not to.  There's a whole lot of people who are just patently gutless when it comes to an ability to sympathise with people who are suffering, because their own comfort levels trump anything else.  Sad but true.

Well, fuck them, excuse my French.

Because I've been having these paranoid moods from time to time, and they are very scary because I get scared that I am going to develop schizophrenia if this goes on for much longer, I am cutting my losses and going to visit a GP who understands pyroluria and problems in people's methylation cycles.  It's not gonna be pretty.  Estimates are at the top end that it's going to cost me 700 bucks.  I've prevaricated on that up until now because (a) I haven't had 700 bucks and (b) I've hoped that I would be able to get things sorted on my own without the necessity of traipsing across town to yet another doctor.  And maybe I still would be able to, as it's only been six weeks.  But I'm tired.  I'm so tired, even while my energy levels are rising overall.  It's time to hit my dear mother for a loan, and get this sorted.  (HT to Harry for the doctor recommendation).

I've been taking niacin regularly as part of my treatment, but have dropped off a bit recently.  My memory is so bad and I am taking so many supplements, that sometimes I forget what it is I'm taking that particular thing for, again.  But this morning, after yesterday's uber gooberly paranoia explosion, I remembered, via that fount of all medical knowledge, the interwebs, that high doses of good ole niacin (vitamin B3) have been shown to help schizophrenics and other paranoidly-minded individuals to manage their paranoid symptoms.  As I feel on occasions like I've been flirting in the land of pre-schizophrenia recently, I'm happy to take anything that may help me avoid becoming a full-blown dweller of that particular land at the top of the Faraway Tree, thanks very much.

It's important if you are taking higher levels of niacin that you take the nicotinic acid version, as the other type, nicotinamide, has been found to cause liver problems at high dosages.

The nicotinic acid causes this really bizarre "flush" when you first take it.  It's the blood rushing to your extremities.  For me it happens very quickly - 15 minutes or so after I've taken it.  I took 200mg earlier and 15 minutes later it began, with my scalp getting all tingly and hot as the blood rushed to it.  And then it spreads itself down your body, blotching up bits and peices here and there.  I looked at myself in the mirror, and there were big red blotches on my shoulders, on parts of my arms, down my legs.  I felt really hot, even though it wasn't very warm.  After half an hour or so of looking like a sunburnt freak, it began to start settling down, and I felt a little tranquil.  Must be the blood now being able to reach more of me to do more its thing.

As for dealing with paranoid symptoms, I don't know if it's coincidence, placebo suggestion, or whether my paranoia was perhaps caused by something else (like the wheat I seem to be becoming increasingly intolerant to and seems to be the culprit causing highly enjoyable bouts of suicidal feelings a day after eating it), but I can definitely vouch that on at least this occasion, I find that it most certainly has helped with lifting that paranoid mood to a certain extent.  Which is nice.  You wouldn't want to wish anyone there, no matter how little you like them.  I never imagined I would ever arrive there either.  It's a terrifying and humiliating space to be in.  All I can hope for is that it's not going to be an extended stay. 

I plan on continuing on with the niacin and will report back on whether it's helped to keep the paranoia at bay.  Anyone who's had any experience with niacin in this regard, feel free to leave a comment.

Like everything else seemingly with pyroluria, the amounts of certain supplements are w-a-a-a-a-a-a-y higher than the recommended daily amounts listed by the FDA and other such bodies.  But certain situations require jumpstarting.  As Dr Hoffer, the writer of Niacin: The Real Story says: ""As there is a certain, large amount of fuel needed to launch an aircraft or a spacecraft, there is a certain, large amount of a nutrient needed to cure a sick body. With vitamin therapy speed of recovery is proportional to dosage used."

Here's to takeoff.


  1. what a journey you are on
    i do hope the new doctor can provide a solution
    may you find the dosage of what you need to soar into a place of wellness

  2. You don't need to explain the oochy scroochy horrible feelings in body and mind to me, and I am lucky to have that little voice to remind what is me and what isn't too. Oh yes for sure wheat/gluten could be adding ot the suicidal thoughts. Depression too. And the grumpies! It does for me and can last up to two weeks so definitely time to look into that methinks.

    I'm not sure as am deep into research and have blown my brains through my ears trying to fill my head wiht more and more knoweldge about this stuff, but i think there is something about unconverted niacinamide that helps where more converted B3 won't. Something about channelling off tryptopahn to convert the B3 and then it doens't get turned into nasties like quinolinic acid that further excite your NMDA receptors. (Why i can't eat turkey any more! Boo hoo!) Anyway maybe keep taking some of that earlier form just in case. A bit like it is good to take a mix of forms of B12, B6 etc. Unless you are me in which case B6 in it's early form makes me even more craaazy!

  3. Hi Sue. I use the the niacinamide version of vitamin B3, it seems to work well for me and it doesn't have the niacin flush. After taking vitamin B6/P5P for a while, I felt my brain wasn't quite quite working right until I added B3 to the mix. Sounds like you're having a tough time, I hope the doctor I recommended works out for you, from memory it didn't cost as much as $700 and some of it you can claim back via medicare. It did take me about a month to get a booking, so it might pay to book sooner than later. She does a longer session initially to look at all your symptoms and get a complete patient history, then it's off to get tests done. Good luck.

  4. Hi Harry. You know, I take a perverse pleasure in the niacin flush. Sure it makes you look weird, but there is a nice feeling that comes with feeling like blood is flowing to my extremities, and it makes me feel very warm :) And luckily that flush goes away very quickly - the next dose on the same day and it didn't repeat.

    Ah, I forgot about the claiming back on Medicare bit. Good. I can give some back to Mum, then ;) That price was the upward price quoted by the receptionist at the clinic. I've already booked, actually, so looking forward to going and getting more answers and more things sorted. Thanks for your advice.

  5. Hey, Tina. Thanks for dropping by :) That's amazing that eating gluten affects you for that long. Sheesh. Okay. That's it. A renewed and concerted effort to avoid that evil temptress, wheat.

    Interesting about the different forms of B3. So when yu say "unconverted niacinamide," are you referring to the nicotinic acid? And interesting too that B6 makes you feel cwazy. Sheesh, such a steep learning curve, and so many bloody twists and turns. My naturopath told me today I am very intuitive when it comes to gutfeeling the right dosages for my body. I'm pretty glad about that, because this whole deal is bloody hard enough already.

  6. Thanks, Ms Kel. I hope so too!

  7. I used to get a slight flush from the niacin in my B complex, it only happened a couple of times when I first started taking it. I can't say I found it all that pleasurable but I can kind of understand how someone would find it pleasurable. How far away is your appointment? I think I had to wait a month when I first booked.

  8. My appointment is on 4 October, so it's not far away now. But then they told me the test results can take up to eight weeks to get back, which is like, "Sheesh." Did yours take that long?

  9. October 4th isn't too far away, which is good. I think I had to wait a month for my initial appointment. Then it took me a couple of weeks to take the tests, then I thought it was about a month to get the test results back. These things always take time (which I find rather annoying)....

  10. When i said unconverted niacinamide, I think I meant niacin. Please don't quote me. My brain is porridge. :) Actually it might be that niacinamide is the one you want, but not NADH. :P

  11. It's uber annoying how bloody long everything takes, isn't it.

    PS: I got an iHerb delivery today with some zinc glycinate in it to try. I'll let you know how it goes.

  12. I guess patience is the key...still trying to learn that one myself. Yeah definitely tell me how the zinc glycinate goes.


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