Stephanie Bateman-Graham (stephbg) wrote,
Stephanie Bateman-Graham

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New drug: Low Dose Naltrexone (LDN)

A few days ago I started a new drug trial so I'm a bit remiss in making a full report. This might not be entirely coherent but should contain enough of the basics for future reference. Disclaimer – I'm simplifying in the extreme to the level of my own basic understanding which may or may not be particularly accurate.

Naltrexone is a drug normally prescribed to treat alcohol and opiate addiction. It blocks opiate receptors thus removing all the fun factor from one's recreational drug of choice. My life lacks both fun and  recreational drug use let alone addiction, and I really need all my opiate receptors in good working order for natural fun things like endorphins, so what am I doing taking this stuff? Turns out dosage matters.

Here's where I get vague and generic for my own purposes, because at low doses (typically 3-4.5mg as opposed to 50mg) LDN is supposed to help with a wide variety of conditions, from boosting your immune system, to improving fertility. This sort of thing makes me immediately suspicious, but I came across it first via the fibromyalgia community where several people are reporting success via a more intuitively acceptable mechanism.

Naltrexone blocks opiate receptors, and if you have chronic pain and chronic fatigue, that's not good news. Stay Away. Awooga Awooga.  But at low dose the idea is to block some opiate receptors which then stimulates the production of endorphins. The opiate receptors recover quite quickly, the endorphins hang around and generally make life better. Rinse and repeat.

Theoretically once you get the dosage and schedule right, you can sleep through the bit where your opiate receptors are blocked (bad news) and be more awake and feeling a lot less pain the rest of the time (good news, trust me), right up until you take your next dose.

The bad news, finding that right dose is a literal rollercoaster. For a start, codeine and naltrexone don't mix. I'm no heroin addict but I was accustomed to taking a conservative 30mg of codeine at bedtime to help me through the night, and the occasional rare extra 15mg once or twice during the day if I had the right kind of pain for it. Information varied wildly as to whether I'd need to wean off this codeine entirely before I could start LDN. Professionals (psychiatrist and pharmacist) said the only possible effect would be to slightly reduce the effectiveness of the codeine. People on user groups and various information sheets warned of wild side effects featuring terrible nausea. I decided to take the middle ground and drop my night codeine to 15mg for a few days before starting LDN.

There was an other complicating factor in all this, that I had also recently tried to exchange my main nerve painkiller Endep (amitriptyline) for a very slightly different drug called nortriptyline. Endep does great things like treat nerve pain and help me sleep, but it also has a pile of unpleasant side effects affecting appetite, taste, weight gain, and depression (it's also used as an antidepressant). Unfortunately the amitriptyline > nortriptyline experiment failed with spectacular (*sigh*) nausea, so I was off both of them when I started the LDN trial. Had to do *something* to keep pain at bay, because with fibromyalgia if you don't control the small-medium stuff it flares into agonising off-the-chart stuff in record time. Panadol Osteo does a pretty good job of maintaining the balance during daytime, as long as there's nothing else going on to trigger pain, like weather, or exercise, or a cold, or eating too many vegetables, or having a bath that's a bit too hot, or reading for too long, or lurching into furniture... you get the idea.

So basically pain management was in a very precarious place when I started my LDN trial a few days ago, because I pretty much had nothing left to deal with anything other than the small-medium constant background all-going-well stuff.

Back to the LDN. Interactions with other things notwithstanding (although there are more of them to come) all the advice was to start low and slow. The first three nights I had 1mg. This was achieved by dissipating (not dissolving – it creates a suspension, not a liquid) half a 50mg tablet in 25ml of distilled water as per (thankfully consistent) instructions. Used a small syringe (sans needle) to draw up the dose and fling it at the back of my throat as I'd done to cats many times before. It tastes vile, but it's not the worst medication I've suffered through. I suspect my blunted sense of taste is actually helping me, but it does take a coke chaser and things like kalamata olives and eating Vegemite from a spoon to help it down and stop me from sticking my tongue out and shaking my head.

Getting too tired to go into the complexities of timing LDN and sleeping pills, but LDN is known to disturb sleep. Thought I got the hang of it while on 1ml, but on night #4 I went up to 2ml and again woke every couple of hours. I'm actually adding broken sleep to the list of reasons for cautious optimism.

Other reasons for cautious optimism include improved productivity in the last few mornings, and some instances where normally agonising spots have felt much more dull. Plenty of room for placebo effects, but things seem good thus far.

I've not yet found my maintenance dose, so what that means is after I've had a possible little endorphin boost in the morning, it flattens out and then I get a crash in the mid-late afternoon. This gets worse until 9pm when I can take my next dose and make things a bit worse for a while by blocking even more receptors. All this depression crashiness is accompanied by lack of pain relief options. The last few evenings have been grim, and so I stepped up to 2ml perhaps a bit faster than is generally recommended. My mood this evening will be one to watch. I'm hoping for something outside the square of crushing depression, because really I've not much to fight it with these days. Thank heavens for friends on Facebook.

So that's where we are. Cautious hope for pain relief, wariness while finding the right dose, sleep might need to be renegotiated, and some nausea at first but it seems to be settling.

Apologies to those who know more than I do for gross errors and medical misunderstandings. For everyone else, do not take anything I say as medical advice of any kind whatsoever. Ever.

Tags: drugs, medical

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