Written at 08.00 today. And wow! was I ever wrong in yesterday’s post!
Apologies if this rambles a bit – I’m not in a good place right now.
My weak-as-piss Oramorph is useless (dose is 2.5 or 5ml – even 10ml does bugger all), and my Tramadol is now banned.
I know why, it’s because it competes with the same receptors as Gaba and morphine, to the detriment of all, but knowing that is no fucking help when I’m sitting here in absolute agony. And in tears – and believe me when I say I’m a hard bastard when it comes to pain, and it takes a hell of a lot to tip me over like this.** It’s happened just twice in my life, the first time just a month or so ago. But if I mention to my docs that I feel suicidal again today – and I do, ultimately I see no other way out unless I get the drugs I need – it’ll look like blackmail. In the event, I did mention it. Sod ’em if they think it’s blackmail. It is!
**Even the pain of a coronary failed to do that, as did passing a gallstone. Today has been worse than either.
And here’s a thing. I’d swear on a stack of bibles – well, I would were I not an atheist, as it is, you’ll have to take my word for it – that I had an emergency stash of Tramadol squirreled away. Not a lot, just a few sheets, but I can’t find it.
Now either I’m losing it to a greater degree than even I suspect** – and that takes some doing – and it never existed, or someone has swiped it.
**Believe me, kiddies, constant pain on this level distorts one’s perception of reality. Right now, hand on heart, I can’t say for sure whether I intended to have a stash, and never got around to it, or I did have one, and some bastard has liberated it. Either way, I’m fucked.
Scrabbling around in the bottom of my current meds box (the one I keep by my side), and my jacket pockets (I always take back-up pain meds on the rare occasions I go out – and nurses please note, going out twice in a year does not, in any way, abrogate my housebound status!), has turned up one full sheet (5 doses), and one sheet with 3 doses, plus one I’ve just taken and fuck the receptors – they can take their chances.
I’m rejigging my meds schedule to take account of the now banned Tramadol, and it occurs to me that one reason I can’t deal with breakthrough pain effectively is that every bloody analgesic except Paracetamol is sustained-release. Oh, except for the piss-poor Oramorph too, which can safely be ignored as useless.
To treat breakthrough pain, especially at this level (I’ve taken 400mg of Naproxen and 100mg of Tramadol and the pain is slowly fading – too slowly for my peace of mind), I need a drug that will give me as close to an instant hit as possible – not something that takes up to 90 minutes to seep into my system, like Gaba, and, like today, sometimes doesn’t make it at all.
I explained to my GP yesterday – futilely, clearly – that without Tramadol the other drugs didn’t work well, or at all, like today, and that for reasons I can’t explain, Tramadol functioned as a facilitator for Gaba and morphine. Might as well have saved my breath.
So, today, I wrote him a letter which I faxed about half an hour ago:-
Dear Dr. Bxxxx,
First of all, I’m told by Haven that a stop has been put on my Gabapentin for a few days. As I will run out of them at 05.00 Sunday morning, that’s less than helpful.
Further to our conversation yesterday regarding controlling breakthrough pain, I woke this morning to a day when my pain was all breakthrough and no control – not until I managed to find a few remaining Tramadol, but I’m getting ahead of myself.
Once again I found myself in so much pain that – other than sit here in tears – and believe me when I say that takes a hell of a lot to accomplish, my immediate inclination was simply to end it there and then.
I got past it, obviously, but in all seriousness, I don’t know how much more I can take, not least with the prospect of this being with me for the rest of my life. I can’t – I won’t – continue to live with uncontrollable agony on this scale, and it’s unreasonable to expect me to.
Eventually, I found a partially-used strip of Tramadol, took two, and as I write the pain is fading, finally. That’s both helpful and useless simultaneously as it’s clear I’m not getting any more, no matter how beneficial they are (yes, I understand the receptor problem in theory, in reality it’s apparently not a problem).
The nurse has been and gone, having re-dressed my leg and, as always happens for a few hours afterwards, the pain is building again.
So, where do we go from here? I can’t stand many more days like this, and without Tramadol there will be many more. A large part of the problem is that all my pain meds except Tramadol are sustained-release (Gabapentin takes 90 minutes or more to do its thing – except when it fails utterly, like today – why is that?). That means, without Tramadol, I don’t have a single drug that will kick in quickly and knock the pain back down, so it just continues to build until I feel the only option I have to end it is to end me. This – at the risk of stating the blindingly obvious – is not a good place to be.
OK, I do have Oramorph, but it’s the weakest stock solution at the lowest dose, and is relatively ineffective even up to 10ml. If it works at all it takes so long that I’ve given up and taken something else by then, so I have no way of knowing. And I mean waiting an hour at least, not a few minutes. From what I know of Oramorph from other users, it should kick in quickly and last for about 4 hours – so why doesn’t mine? Is it simply too weak?
So if I can’t have Tramadol, what then? It leaves a hole in my medication. Higher-strength/higher dose Oramorph is one possibility, and would be my first choice as I know how effective it can be if we can get the strength and dose right. It’s not that I’m one of those for whom morphine does nothing, as Zomorph works just fine, breakthrough pain permitting.
I’d appreciate it, Dr. Bxxxx, if you’d treat this as urgent – I can’t face a day like today, tomorrow.
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So there, for now, it rests. In the fairly recent past I’ve been deprived of:-
DHC – because it might cause pleural oedema, despite the fact that it had conspicuously failed to do so over several years and, if it did, it’s treatable.
Naproxen – allegedly because it caused a gastric bleed. No, it didn’t. The bleed was caused by my vomiting for 12 straight hours, and THAT was caused by a bowel blockage, treated at A&E with i-v laxatives. I’ve seen my hospital file, it makes no mention of it being caused by Naproxen.
I now buy my own Naproxen from the US, and their formulation is more effective than ours so, even though it appears weaker, 200mg to our 225mg, it’s better.Well, it is for me, at least.
It’s not possible to buy opioid analgesics, though, as far s I can see and, if it is, I doubt they’d be affordable.
As to the motives of this particular doctor repeatedly depriving me of beneficial drugs (while moaning like buggery if I refuse to take drugs that have proven harmful!), I really have no idea. Unless it’s payback for refusing harmful drugs? Could be, I suppose.