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.