Codeine addiction dilemma

[EmbarassedAddict]

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?

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.

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.

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.

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.

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.

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]

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