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Codeine addiction dilemma

(33 Posts)
EmbarassedAddict Mon 01-Jul-19 16:21:03

I’m a codeine addict. This is the first time I’ve said it anywhere - certainly never done it IRL. I take it for three reasons:
1. Because I have severe migraines (one or two per month) - the only thing that enables me to function is 100mg of sumatriptan and two 12.8/500 Solpadeine Max. I could just take 100mg of sumatriptan and go to bed but two DCs and a full time job prevents this. I can carry on with the addition of the I’m under a neurologist for these who has got them down from one or two migraines a week following an inpatient course of IV DHE. He thinks codeine is the antichrist so he has no idea I take it to manage attacks.
2. Because I feel generally shit a lot of the time from an autoimmune condition.
3. Because I like feeling at peace with the world.

Reason 1 I feel is unavoidable. Reason 2 I feel I should find far more functional strategies to cope (doing less, accepting more help, but popping pills is easier). Reason 3 is pathetic.

The problem is Reason 1 happens and I can’t stop. There have been periods where I’ve come off completely for a couple of weeks, felt very proud of myself (especially after the three days of feeling like crap) then another headache hits and I’m back on for another x number of months until I can talk myself off them.

It’s not affecting my life - yet. But I feel like it could become a problem if I don’t sort it.

What do I do?

Masonsmum1992 Mon 02-Dec-19 15:45:31

I understand what you mean I used to have a addiction to codeine I was taking a family member prescription of 30mg codeine per tablet 100 of them would last me about 5 days and when I didn’t have them I’d get the 12.8mg ones from the pharmacy take 8 at once just to feel it , my sides hurt my head hurt but I carried on because I was addicted it’s awful

triballeader Thu 11-Jul-19 17:49:42

Posting as I live with a formal diaognosis of chronic migraine & cluster headache with a nice side helping from the neuralgia fairy

I spent over 40 years trying every darn prevenatative and then some so I have some appreciation of how hard chronic forms of migraine are to manage. If Cephaly worked for me I would not give a damn about walking round looking like I had escapped from a Star Trek episode. Instead I lug round bottles of oxygen and have to wear prescription light block glasses as an EEG proved I was dead right about having a light sensitive trigger for the worst migraines.

I no longer work and when its in a really bad phase I get PIP.

Codiene is the anti-christ for chronic forms of headache conidtions and from the support groups your not the only one who has fallen into the condeine addiction pit. Sadly the wretched stuff is notorious for kicking off rebound headaches that are far nastier than the pain of migraine. It does not touch CH. Ditto triptains for migraine. Take more than 2 to 3 per week and your at real risk of a rebound headache jumping you down. Note: with CH you can take 2 p.d and it does not trigger rebound as it does in migraines. Its a tightrope to juggle when you have both as its easy to get it wrong and wish you had not. There is a closed group called Brainwreck Rebels that provides online support for chronic migraine/CH with any form of neuralgia who have not found drugs really help.

A good headache clinic will support and help you if you can tell them you have got stuck on codeine. From others I know its not going to be great as your need to get through to the other side of rebound headaches. Ice-packs are your friend if that happens.

Oxygen can also help with some forms of chronic migraine but it works best using ultra-high flow [upto160 lpm on demand valve] This can only be prescribed by a hospital headache clinic and it beats the standard 15 lpm high flow hands down.

If your really struggling it might be worth asking for a tertiary referral to The National Hospital for Neurology and Neurosurgery (NHNN), Queen Square London. They have the best rated Profs with a genuine interest in managing the most intractable of primary headache disorders. Again be honest and let the Drs there know codeine has got you in its grasp. It will help them to help and support you and hopefully begin to work out what options you may have.
[Like ONSI or DBS surgery if drugs do not help]

Dapplegrey Wed 03-Jul-19 09:10:43

And I do take them at times when I’m not in any particular pain, that’s my problem.

You’re not alone there. Apparently some people get addicted to opiates and some don’t - like some people become alcoholics.
I don’t think it’s known why.
The problem is that tolerance goes up quite quickly and the addict will need to take more and more. Someone we knew was in hospital suffering from cancer and he became addicted to morphine. When he was discharged he carried on taking it (not sure where he got it from but apparently it’s not hard to find).
Then his cancer returned and when he went back to hospital he told the doctors what had happened and how much morphine he was taking. They were unable to help the poor chap as they simply weren’t allowed to give a patient those sort of quantities.
Anyway, this post isn’t helping your problem but I’m explaining some of the consequences of addiction.
I hope you find a solution and something that works as migraines are horrible things and as you say, make leading a normal life impossible.

EmbarassedAddict Wed 03-Jul-19 07:53:04

And at the end of the day, you can’t carry on with life with a Cephaly stuck to your head. I was still confined to a dark room, not in work and not with my DCs.

EmbarassedAddict Wed 03-Jul-19 07:50:14

I’m very smell-sensitive so 4head and Tiger Balm make things worse and bring on the vomiting quicker. I’ve tried cyclizine, domperidone and prochlorperazine to stop the vomiting. Also no.

EmbarassedAddict Wed 03-Jul-19 07:47:46

I don’t think a GP can prescribe Flunarizine as it’s unlicensed for migraines - the neurologist had to request it via the hospital pharmacy for me.

Cephaly got me through my painkiller-free year. Sort of. I think the weird feeling of it distracted me from the migraine at the time of an acute attack but, yes, as soon as it was off the pain returned so I’d just have it on continuously. I used it three times a day on non-migraine days for its alleged ‘preventative’ abilities. Nada. I used another thing for months called a Gammacore which was basically a vagal nerve stimulator that you hold up against your neck three times a day which is meant to be a preventative as well. Not here it wasn’t.

Lougle Wed 03-Jul-19 07:28:06

I haven't been offered that. My neurologist gave the GP a long list of things to try and I've got to the end of the list.

How did you find Cefaly? I found that it takes away the migraine when I'm wearing it, but it comes straight back as soon as it's off and you can't spend the whole day wearing it. Plus, I'm a side sleeper, so I can't rest if I'm wearing it.

I also used Tiger Balm and 4head, but they didn't do much either.

I don't often vomit, but I'm so noise and smell sensitive and I can't cope with more than one noise at a time, which is hard with children. My balance and fine motor skills go and I lose my words... It's all pretty rubbish.

EmbarassedAddict Wed 03-Jul-19 05:43:37

Lougle Flunarizine was partially effective for me, but I put on a huge amount of weight with it so the neurologist refused to prescribe it further for me. The IV DHE has been the most effective so far, pretty much halving the frequency of my migraines. Don’t know if you’ve tried either of those things? He’s got me in mind for the monthly injection as well if it ever gets approved by the NHS in my area.

devilinme Tue 02-Jul-19 23:36:51

I took soluble solpediene , up to 10 a day for 24 years. Totally addicted until I ended up hospitalised with suspected meningitis. After three days in isolation and two botched lumber punctures followed by a successful one then a three day lumber puncture headache that I was told to go home and lay flat and drink coke to treat I somehow kicked the habit and never looked back. This was 6 years ago.

Having vowed never to take codeine based painkillers again I recently had a really bad tooth extraction that took an hour. The pain afterwards was so bad a took solpediene max for a few days but stopped.

I will add that I have had regular migraines for years, less so since the menopause, which I have triptan for.

I gave an addictive personality and after the solpediene drank up to six cans of red bull for several years. I went on holiday and kicked that by going cold turkey and repacked with water and Coke Zero - now drink that too much but am gradually switching that out for tea.

Not really sure I'm much help here but I understand

Lougle Tue 02-Jul-19 22:48:17

I'm so sorry, Embarrassed addict. Chronic migraine is really hard to treat, I think. Mine are cyclical, and I get them every two weeks (period and ovulation) for several days. That's besides the ones I get because it's too sunny, or there's lots of noise, etc.

I agree with you that it doesn't matter how much you are taking, you've recognised that the codeine is driving your behaviour and affecting your daily life. That's the nature of addiction.

Please go to your GP. They won't be surprised and they won't be judging you. They will want to get you help. They won't want to leave you in pain, either. flowers

EmbarassedAddict Tue 02-Jul-19 19:22:06

Lougle I have genuinely tried every single one of those things, plus many other things, prescription, non-prescription and alternative medicine besides. At best they’ve not worked or, at worst, given me dangerous side effects. Every single one.

Annie Dihydrocodeine doesn’t work for me. I know what I take is well below a prescription dose (although I had a field-day following a hernia op when I was sent home with a box of 30mg tablets) but...I take it when I’m not in pain for the nice feeling I get from it and because I think it makes me a nicer person to be around. I drive home different routes, knowing where all the pharmacies are, and remembering when the last time I bought cocodamol or Solpadeine Max from them so I don’t pitch up too often at the same one and get awkward questions. When I can wean myself off it for a few days/weeks, I spend the first three days with diarrhoea and feeling generally crap, then most waking hours thereafter thinking about taking it. When I’m stressed, my first thought is, ‘Has it been four hours since my last dose?’ My day is mentally divided into 6am, 10am, 2pm and 6pm. I think it’s pretty clear I’m an addict, regardless of the quantity I take.

AnnieOH1 Tue 02-Jul-19 17:55:23

Your taking less than half a prescription max dose of codeine which in itself is below the ceiling level. Honestly I think you're panicking for nothing.

You may want to try something like paramol which is paracetamol with dihydrocodeine but as it is stronger you may only need 1 not 2.

A prescription dose of codeine phosphate would be 60mg 4 times daily, unless you're taking more than you've said here or looking at CWD (you'll know what that is if you are) then speak with your doctor about prolonged paracetamol use but I really don't believe you've got an opiate addiction.

There is a huge difference between an addict seeking a fix to get high and someone who needs pain medication to function.

Lougle Tue 02-Jul-19 17:45:59

I understand completely. As a chronic migraine sufferer, can I just check if you've tried all of these?

-3 X 300mg aspirin and a can of full fat coke, together.
-Frovatriptan (I found this to be the longest lasting triptan) I've also used injectable triptan, but got fed up of the trigger noise.
-Prochlorperazine for nausea
-Tri-cyclic antidepressants (amitriptyline or nortriptyline)
- melatonin to aid sleep cycle
-beta blocker
-Cefaly Machine
-ice packs and heat packs
- tying a pair of tights around your head, with a knot over the temple that is most affected, then lying with the knot into the pillow.

I'm pretty sure I've been on other things that I've forgotten about... I've been through all the triptans too. It's miserable, isn't it?

I'm always mystified when people talk of the chilled feeling with cocodamol, etc. When I do take it, I feel... Nothing. Not a sausage. It's not even very good at taking migraine away.

DecomposingComposers Tue 02-Jul-19 17:30:44

And I do take them at times when I’m not in any particular pain, that’s my problem.

Sorry, I missed that in your OP. Have you tried other pain killers? I find that codeine makes me very mellow (plus really sick, so that's helpful in stopping addiction I think) but tramadol has no kind of "high" effect on me at all, so I wouldn't be tempted to take it other than for pain. I spoke to a pharmacist who explained that they work on different receptors in the brain. Would your GP be willing to help find a good pain killer that avoids the good feelings that you get from codeine?

(Please understand that this is just my own experience here and I have no idea if it is the correct way of dealing with it but I totally understand how difficult it is to get proper pain relief for long term conditions and how utterly difficult it is to try to lead any semblance of a normal life whilst in pain. I also hate it when people make endless "oh have you tried X,y or Z" comments so I apologise for doing that on here and please feel free to ignore my post if you like.)

flowers for you too and if nothing else, I understand.

PotteringAlong Tue 02-Jul-19 17:14:35

Cross post, sorry.

PotteringAlong Tue 02-Jul-19 17:14:01

I’m under a neurologist
He thinks codeine is the antichrist

This suggests that there’s a good reason not to take it. There seems little point in having neurological care and not following their advice. How does he suggest you manage the attacks?

EmbarassedAddict Tue 02-Jul-19 17:13:17

And I do take them at times when I’m not in any particular pain, that’s my problem.

EmbarassedAddict Tue 02-Jul-19 17:12:02

Thanks Decomposing flowers for you

EmbarassedAddict Tue 02-Jul-19 17:10:59

My neurologist would do nothing other than tell me to suck it up and just manage on the sumatriptan. He would be no help whatsoever. He might offer an inpatient detox but I can come of it myself without that, but wouldn’t solve the problem of the inevitable relapse.

DecomposingComposers Tue 02-Jul-19 17:09:59

OP I really feel for you. I have inflammatory arthritis and Crohn's disease so I can't take anti inflamatories either (definitely not now as I had a GI bleed earlier this year). I'm prescribed pregabalin, co codamol and tramadol. The pregabalin I take every day. The other 2 I limit because I'm scared of becoming addicted. Currently I take them about 3 times a week when the pain is really bad. But what other options are there? Working definitely makes my pain worse so I could give up I suppose band rely less on the painkillers but that's not feasible is it? It's so hard when there are just no other options and you are having to take these drugs just in order to function.

I've just completed a pain management course but none of the strategies are useful if you have to go to work. My Dr did say that addiction is only a problem if you take them when you aren't in pain but I'm not entirely convinced that's true tbh.

EmbarassedAddict Tue 02-Jul-19 17:07:56

Do you think you could at least get to a place where you take the codeine only for migraine?

That’s exactly what I want to be able to do but I don’t know how, or if it’s even possible as I know addiction is generally all or nothing. My last migraine was three weeks ago. I’ve taken codeine in varying amounts every single day since sometimes for reason 2 in my OP, but mostly for reason 3. I could bite the bullet and come off it altogether if I put my mind to it in the next few days, but then another migraine would hit, I’d take what I needed, then just carry on taking it and be back to square one.

Haworthia Tue 02-Jul-19 17:00:24

I understand and I feel for you, I really do. It sounds like a living hell.

Do you think you could at least get to a place where you take the codeine only for migraine?

The kicker is that your neurologist would hit the roof if they knew you even took codeine for your migraines, let alone that you’re addicted. I think you need to be honest with them at least.

EmbarassedAddict Tue 02-Jul-19 16:41:09

I don’t know the long term implications of codeine, Haworthia. Google doesn’t tell me much. Paracetamol isn’t great for the liver, I know that much, but that’s why I never exceed the dose.

I truly have no other option for pain relief when I actually need it. Paracetamol alone does nothing. Aspirin does nothing. I can’t take NSAIDS (ibuprofen, diclofenac, anti-inflammatories generally) as they cause gastric bleeding with the long term steroids I have to take to keep me alive. I’ve tried all the triptans in various amounts and combinations, tablets and injections - oral sumatriptan is the most effective but only partially so alone. The only remaining meds are stronger opioids and opiates than I take now which are hardly a solution, and not one a GP will prescribe if I’m getting effective pain relief on OTC stuff. I’ve been to a pain-specialist psychologist as well so tried mindfulness, CBT and counselling. I’ve had acupuncture and hypnotherapy. High flow oxygen, effective in some cases of attacks of migraine and cluster headaches, doesn’t work. I even went a full year taking nothing at all for anything (not even paracetamol for a fever or period pain) to rule out rebound headaches. All it resulted in was repeated hospital admissions to be put on a drip of fluids and antiemetics for two days at a time with uncontrollable pain-related vomiting, plus warnings of termination from work for so much time off. I haven’t ‘convinced’ myself - there is genuinely nothing else.

Haworthia Tue 02-Jul-19 16:09:29

Well yes, I guess you can be a functioning drug addict if you don’t want to quit, and you’ve convinced yourself that codeine is the only thing that helps your migraine symptoms and nothing else will do.

But my question is - and it’s genuine, because I don’t know the answer - what are the long term ramifications of taking codeine every day? Will you eventually have to take higher and higher doses to get the same “high”, even if you don’t right now? Will you cause damage to your organs?

EmbarassedAddict Tue 02-Jul-19 16:04:12

So I can either be incapacitated once or twice a month (assuming they don’t revert back to once or twice a week), putting my job and my ability to care for my family at risk. Or I can be a functioning drug addict with quality of life. There’s no real incentive to quit, is there?

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