How much codeine, or is there an alternative?

[TooHotTooSlow]

Having just had surgery for the 2nd time this year for Cauda Equina syndrome, I am really struggling with nerve pain in my butt and down both legs. I am currently taking 30mg codeine + 2 paracetamol every few hours (as prescribed by the hospital) but I know that I can go up to 60mg codeine as my GP has prescribed that previously for back pain, although I have always been too scared to take that much.

I am already struggling with constipation so again, on advice of hospital, I am also taking dioctyl regularly. But, I am only getting about an hour relief from pain before it kicks in again. I cant take ibuprofen Is there something I am missing? I don't really want to take codeine all the time, so was trying to just take paracetamol during the day, but I don't feel that that is being effective.

I must sound like such a wuss but I genuinely can't cope with this pain. It is worse now than before either of my surgeries, and while I am assured it is 'just' nerve pain and will settle down, no one can give me timescales.

What about something like naproxen? Have you tried that? Also, some people use amitriptyline for nerve pain I believe.

(nb. Not a doctor, speak to gp first).

Codeine and paracetamol are both ineffective against nerve pain

you need pregabalin o amitryptilline - can you speak to your doctor again

Also please be careful with code one - it’s highly addictive

Speak to gp. There should be alternatives to add in - but depends on what other meds you are on and other medical conditions. You may also need other laxatives as codeine can be constipating.

Gabapentin and amitriptyline are the ones you need for nerve pain. Codeine is very good for muscular pain.

I have horrendous pain from lupus and take a combination of Cocodamol 30/500 during the day (taking two at a time) and Tramadol and paracetamol at night - I do get constipated from the Codeine but laxido sorts it out. Tramadol is very good for back and muscle pain but I’m not sure re nerve pain. Definitely worth asking.

Officially a lot of things say you shouldn’t alternate between Codeine and Tramadol as it increases the risk of side effects but my rheumatologist and endocrinologist are happy for me to do this and it works well for me.

I do have some amitriptyline 10mg but have always been too scared to take it in case it makes me trippy (cant take tramadol for example).

Use the amitriptyline op. It will probably make you feel pretty sleepy for the first week or so, but that does wear off, and is worth the bedding in, as it works really well. I had to up my dose a couple of times to get the maximum benefit, but it works brilliantly. When I started them I took them at 7pm so that I was able to wake up enough early morning. I generally take it around 8-9pm now, and am fine to wake up at 6am to get ready for work.

Thanks @NighghtmareNeighbour can I ask what dose you take? Having checked my box I can take up to 30mg, but as I haven’t taken it for a while I’ll stick with 10 tonight. I’m seeing my GP on Friday but I don’t think I can last that long. I last took codeine at 11am so I think I should be ok to take the amitryptoline around 9 tonight.

Thank you all for your posts, it gives me ideas to talk with my GP about

My mum has Butec patches and oramorph with amitriptyline and ibuprofen gel because she can't take it orally. She didn't get on with gabapentin at all. Codeine made her a bit wappy and constipated and she's settled on her current regime. She has spinal stenosis in several places and gets lots of lower back and leg pain. She takes the oramorph a couple of times a day but some days none at all.

She takes paracetamol and buscopan too. Personally I have dihydrocodeine and paracetamol as that's what I e found works best for me. I also can't take ibuprofen but use the gel. Bad periods need 60mg instead of 30 but that's a once a month thing usually.

It might be best to take the amitryptaline earlier than 9pm as it can make you feel zimbified the next morning.
My GP also gave Diazepam for nerve pain

*Zombified!

@TooHotTooSlow im on 30mg now. I started on 10mg and Dr advised I increase by 10 every 1-2 weeks. I did 10mg for 2 or 3 weeks to be sure the sleepiness had eased off before I went up to 20, then maybe 2 weeks before my final increase.
The codeine should be out of your system 4 hours or so after taking, so taking the amitriptyline earlier than 9 shouldn’t be a problem. Hope it helps you.

If you can't manage Amitriptyline (I can't because it makes me feel too 'woozy'), you must ask to be try Pregabalin or Gabapentin. It seems strange that you're not tbh.

@SpinCityBlues It wasn't that I couldn't manage it, it's more that I was worried that if I took more than 10mg I would be too woozy as you put it. So I just stuck at the occasional 10mg.

However, after speaking with my GP following comments from pp on here, I started taking 10mg each night, upping to 20mg after a week. My GP repeated that I could go up to 30mg so I tried that one night - wow!! I won't be doing that again any time soon! So I am sticking with 20 each night at 18.30 which means I am not too woozy for early starts.

Many many thanks to all who posted, I had completely forgot about my amitriptyline but it seems to be really taking the edge of the pain

I agree with this post. I’m surprised they’ve not offered you either as they are supposed to help nerve pain more than codeine etc.

Just joining this as in a similar position pain wise with bulging discs-am taking 30mg amitryline at night and 500mg naproxen twice a day and last week I was in so much pain was in hospital and the gave me 60mg codeine and paracetamol every 6 hrs. To be honest the 60mg is the only dose that helps-didnt have much left so tried 30mg each dose over weekend and still alot of pain . I don’t find any side effects of woozy etc other than tired and very sore gums! so not sure what medication is causing that. Hope you get sorted!!

What about pregablin or gabapentin?

@TooHotTooSlow how are you now? Hope things have settled down. For anyone else reading this and wondering about nerve pain over the last 6 mths on a lot of different painkillers I can say that personally the miracle worker is amitriptyline, yes it does take a week or two to get used to but then the side effects do settle, don’t be put off my initial side effects as for most people these settle quickly . I recently had a further flair up and the nerve pain was unbelievably painful, like nothing ever experienced and increasing the amitriptyline really helped quickly. Just thought I’d add this in case anyone comes across this page of searching nerve pain.

Or Gabapentin or low dose naltrexone or Cymbalta.

Unfortunately nerve pain can be very hard to treat. I've been on some very strong pain medications and they do nothing. Unfortunately the medications used for nerve pain also do nothing for my pain.

A few posters on this board have gone down the medical cannabis route.

I don't blame them tbh. If it helps, it helps.

OP I just wanted to add support for the suggestion of giving the amytriptiline a good go. I have a badly herniated disc in my neck and have neuropathic pain in my shoulder arm and hands. Was prescribed up to 240mg codeine a day by gp but it didn’t help with the pain other than make me sleep so I suppose I could escape the pain for short periods but thats definitely not a sensible plan long term. I also cannot take naproxen.
My spine consultant strongly recommended amytriptiline and its been great. I take 20mg and have virtually no pain now even the weird pins and needles and burning has gone. It does make me sleepy so I take it at around 9pm and I’m fine to get up the next day.
the other two things that work for me are heat compresses and movement helps over the course of a day.