Constant daily headache

Hello All,

I'm 50 years old, and have suffered with migraine since I was 6. Until relatively recently it could be classified as weekend migraine, didn't matter what I did on Friday nights, stay in, go out, have a beer, have a coke, same result - Saturday morning migraine, same thing happened on the first day of a holiday. Not ideal but liveable.

However in the past year or so they've progressively got worse and worse, the pains become more intense and it's taken longer to subside. My GP prescribed triptans, I tried a few variants before finding zolmitriptan the most effective, and by and large it works as long as I take it in time, and make sure I take domeridone to stop me being sick. But with only six in a box I'm very careful how and when I take them.

The headache pain is more controlable but they wake me, always the same time, 3:30am irrespective of what time I go to bed. Pain starts in the neck with a straight line over my head and into my eye. Never the same side twice.

I also take cocodamol.

I've gone from once a week headache to everyday. Virtually every day I wake with a headache, on the days I don't have it, it comes on around lunchtime, if I don't deal with it immediately then by dinner I'm going to go straight to bed. So I've seen my GP, we've tried proprananol, pizotifen, and currently amytriptyne, none of them work.

I've surfed the web, and convinced myself that instead of migraine I've developed cluster headaches as they fit the description and was going to ask the GP about oxygen until I read a forum piece saying it doesn't work.

Finally I went to see a clinic nurse specialist who in my opinion had already decided what was wrong before we'd spoken, she of course had the benefit of a letter from my GP whilst I didn't.

She's told me my problem is MOH medication overuse headache. I can continue the triptans in moderation, but the cocodamol has to stop dead.

Obviously I asked what I was to do about the constant pain, the reply was to take a walk, use an icepack, or meditate.

In my current position whilst I'm taking two high strength painkillers per day I can still go to work etc, without the pills I'm confined to a dark room. Apparantly I also need to stop for eight weeks to "reset" my brain. The cure is simply unrealistic, even if she's right.

Does anyone have any experience, or advice, quite honestly I can't see how I can just stop taking painkillers and accept the pain.

Oh I feel for you, as I've been there. About 6 years ago I was working and taking 6 Nurofen Plus per day just to try to function. I even used to set my alarm for about 4 am just to get my first dose in early and still have the benefit of a little codeine plus sleep before I had to get up for work.

I knew for a long time (although not soon enough to prevent myself from going down the over-use of painkillers road) that it was probably making me worse, but doing something about it was another issue. As you say, it's all too easy just to say 'you need to stop taking them'.

The way I weaned myself off them was with a pill cutter. I used to systematically take slightly less every day. When I say slightly less, I mean I was actually cutting down by about an 8th of a tablet every day.

Much as I didn't find my head was fantastic afterwards, I'm so glad I got myself out of that cycle. Really hope this helps.

Yes it's very frustration to have to hear that you quite possibly have MOH.
You could have something else like daily migraine or constant daily headache but until you stop taking the painkillers no one will be able to correctly diagnose you.

I hope the nurse is right in a way because if she is you will feel better in a relatively short space of time. Also it is worth considering that if you are taking the pain killers this frequently they aren't working..so it kind of defeats the object of over loading your system with them.

Again on the plus side once you have weaned yourself off them, when you do use them in moderation at a later date they will probably help much more, taken in these short bursts.

I had the same problem and although it turned out I still had my problems on a daily basis I can now save my meds for days when I really need them to at least alleviate my symptoms.

SO yes take the nurse's advice but also start to keep a migraine/headache diary daily (there are some examples on the forum of these).

The oxygen issue is that generally speaking it does work for cluster headaches in some respects but there is no evidence as yet to show it works for migraines. You will have a great deal of trouble getting oxygen prescribed (and it needs a specific type of mask/regulator) by any doc unless you have been diagnosed with cCH (some people even have trouble when they have been diagnosed sadly).

If things continue as they are ask to be referred to a headache specialist (there is a national list on the forum so you can find the nearest to you. If you choose to do this make sure you have weaned yourself off the pain killers before you see the neurologist as the 1st thing they will do is ask you to stop over using triptans or OC pain relief.

I am sorry there are no easy answers for you right now, please hang in there and I hope you get some answers and relief soon.

Kindest regards
Jane

Hello there and welcome

I am sorry to read you have had these for so long and that they are getting worse. MOH is a nightmare - been there - but like the others have already said you can get out of it, it just takes a little time. I did the same as Sarah and cut down one pill a day. Within a few weeks my general tight head pain and back of head pain was down a lot. I now only take codine and tripans 4 times a week. And use Botox as a preventative.

I am sorry to say you may find you get a little worse, before you get better, and if you can take some time off to do this, you will feel bette, you need to rest - make sure you drink loads and loads of water and mediate although it sounds strange at first, it can help to bring down the pain a little. What you have to keep in mind is that this MOH is not for ever and once your body has stopped the craving you will feel it for the better.

The diary is a really good idea - here are some examples https://migrainetalk.forumotion.co.uk/t223-migraine-diaries

If after a few weeks you are still getting the pain 'daily' or more than 15+ days a week, it would be worth asking your GP for a referral to a headache neurologist. I am assuming you are in the UK? If so here is a list of hospitals https://migrainetalk.forumotion.co.uk/t95-neurological-departments-in-nhs-hospitals If not let me know where you are as I have overseas lists too

They will love to see the diary on your first visit as it helps give a good picture of the pain and frequency. And will mean you should go away with a plan, other than stop all meds

There are a lot of migraine preventatives and treatments out there and this consultant will be able to talk you through the options and decide which one(s) you could try first. It is a slow process, but hang in there - migraine management is possible

Do you know what type of migraine you have?

In the mean time, trying to identify your triggers and avoiding them will help - I know not as easy as it sounds (this might helps a little https://migrainetalk.forumotion.co.uk/t330-types-of-triggers) - as you seem to be getting them a lot at night and what they call 'let down' ie the weekend ones. It might be worth trying to avoid stress (I know not that easy )

Also, it might be worth trying to eat something before bedtime, some people get them with low blood sugar at night. Also look at your bed and pillow - have you changed them recently? It might be the way you are sleeping ie the way your neck is supported. I use a mediflow water pillow and it has helped loads with the neck pain part of the mig. The other thing that springs to mins in sleep migs, is teeth grinding, do you wake with a tense jaw at all?

Sorry I am asking 101 questions lol

But you are amongst friends here, so please feel free to scream and shout - we will be here to help

Tee

Oh the other thing which I just thought of - have you changed washing powder or shampoo recently - I was getting loads of migs when we changed the washing powder and I was laying in it all night?

Different people do find different triptains work for them in different ways.

If It helps CH does not start in the neck and progress round it just hits like a gunshot in your eyeball socket and bores without any pause. That does sound more like co-codomol dependence making its presence felt. Co-codomol is a useful drug for very short periods of time for acute pain relief BUT its derived from an opiate and it is addictive. Many people who get hooked on the stuff do not see it coming until they suffer pain every day. It is advisable to have medical support to get off the stuff as the rebound headaches it causes can make peoples lives miserable. For someone who has really pushed the dose it can cause heroin type withdrawal and if that happens it usually is not recommended to go back on this form of analgesia if you do get addicted to it as it can all to easily happen again. Thankfully there are other analgesics and a neurologist will be able to help you sort out what would be the most helpful to take and when.

If you are prescriped domperidone you get more than six in a box. If nausa is very bad it worth asking your doctor if it is possible to use the suppositry form.

No GP will lightly fill in a HOOF form. If you thought the cost of a sumatriptian injection was steep wait till you see how much home 02 costs. NICE set out very strict guidelines on home oxygen so it is targeted at those most in need and most likely to benefit.

Your specilialist nurse is trying to help you. Sadly MOH is a firey pit you have to walk through to get to the other side. Its not a place I have ever been personally as I know its a risk to be aware of but I have seen other poor souls at the headache clinic I attend trying to cope with this. Try the ice packs, heat packs alternatively and go for which one eases the pain. Look at the likes of topical migraine sticks like Tiger Balm- warming [Boots/supermarkets] or the various migraine cooling sticks. Try and distract yourself with something that is a bit more fun.

If you do not take this medical advice you will stay addicted to co-codomol.
The pain you have now will become progressively worse and you risk seriously damaging your health [kidney and liver failure sound fun?].
You can get support for over the counter and prescription drug addictions from various local support groups.
Your local council should have the details of your nearest drug project.

Yes it will be very hard but if you want migraine relief drugs to work when you truly do need them to you need to get off the stuff , give your body the break it needs and get help from a headache clinic to work out the right drug regime for you.

If I sound hard its because I have watched a friend ignore this type of medical advice. They ended up in ITU with a damaged liver and their health has never recovered. Its not a good place to go to if you can avoid that.

Hi Tim,

There is already a lot of information been given here by others and I can only echo what they have said.

Codeine is a definite no no when it comes to headache management. I can understand your need to be able to work as I too have been there but I was able to go "cold turkey" although it made no difference to me, my migraines had become chronic long before.

It normally takes about 3 weeks to get OTC meds out of your system, a total nightmare if you work. So what I would advise is that you go back to your GP and draw up an action plan. You can start by trying another preventative (as has already been mentioned there are many to try), when you have started the preventative you can then try cutting down on the OTC meds. If you need time off work I am sure your GP would support you with regards to this.

However, if this fails then being referred to a Headache Specialist would be beneficial and they would then consider admitting you for a period of time to detox you. If they have seen that you have already made a good attempt to do this yourself it will go in your favour.

Also, keeping the headache diary, and sticking to a regular routine: regular sleep pattern, regular healthy meals (4-5 meals a day rather than 3 to help maintain your blood sugar), exercise every day - gentle walks, reducing your caffeine intake, drinking 2-3 litres of water a day to ensure you a well hydrated, etc.

Unfortunately managing this illness is not straight forward but starting with some slight changes may be very beneficial in the long run.

I hope all of the information we have provided will be beneficial to you.

Michala

All, many thanks for the advice. As I said in my first post I think I've tried ALL the possible preventatives there are (proprananol, pizotifen, amitryptiline,) but if there are others I'd be happy to hear about them.
I looked up an old diary and found that in 1991 (twenty years ago) I was averaging three to four headaches a week so not that much has really changed.
The specialist I was referred to was a migraine person, and fellow sufferer (or so she said) had already decided it was MOH which it could well be, but I've decided to get a second opinion. She also stated that the triggers (chocolate, cheese, red wine, etc) were all wrong and not one of them was medically proven. I did find this a little strange.
I'm off to the GP tomorrow for a chat. I realise that I take too many painkillers, I guess I'm taking two cocodamol 30/500's a day and three triptans a week, but yesterday would be a good example:
Woke at 1:00am with a crushing headache, I'd had a pretty normal working day, so couldn't come up with any direct reason why I had such pain. I had a meeting to go to at 8:00am, so for the hours in between I sat in a chair with an icepack, taking four cocodamols, and 1 triptan. Although a big "foggy" I made my meeting.
Today I'm still a bit sleepy, and have a background headache but I can live with it.
As much as I want to stop the drugs next week I have meetings in Amsterdam, and the following week in Frankfurt. These trips simply could not happen if I have a migraine (usually they feel like someone is trying to crush my head across the top, they then gravitate to one temple or the other, then the runny nose/eye starts), so I take the painkillers to get through the day.
I like the sound of the pill cutter, that makes sense to me.
Anyone got any other ideas that could fit in with a normal schedule, or have I simply got to find the time to accept the pain?

Errgggh all sound familiar (but without the traveling in my case).

Sadly I think it's going to be a question of accepting it's going to get worse before it gets better..then it'll level out and you will have an idea of what's 'real' migraine and what's MOH.

You could be getting the migs in the night for many reasons withdrawl from the pain killers has be to be ruled out before anything else can be looked at.

Yes there are many other drugs than the ones you have listed also GONB and DHE if those fail. There is more info on the medications topics.

https://migrainetalk.forumotion.co.uk/f3-medication-and-treatments

Have you tried noradrenaline reuptake inhibitors (e.g.mirtazapine) and there are a variety of anti convulsants available. There are many options a neurologist can that you through so do not give up hope.

Sorry there are no easy answers and any headache specialist you see will want you off the pain killers before they can get a true picture of what's going on.

Jane

I think you'll probably find, like most of us, that it's not strictly MOH, but that medication overuse has made things worse. ie you had the problem that caused the medication overuse in the first place, but that they won't respond to anything whilst you're getting rebound attacks from the analgesics.

I'd definitely try the pill cutter rather than going cold turkey. I managed to work whilst doing that, and it really wasn't too terrible, although sometimes hard to be strict about reducing them down on very bad days.

Let us know how you get on.

Check that you have tried all the possible prevenatatives according to the BASH Guidelines. It can take quite a while to establish a therapuetic dose to be sure if they help or no. Sadly MOH will muddy the waters. Anti-convulsecents can reduce pain as well as help some people reduce migraines and that may be helpful for coping with the pain of withdrawal from analgesics.

Its best to keep triptains down to a max of 1-2 a week. if you are regularly stepping over you could easily be suffering from a triptain rebound headache *ouch*.
The only exception is for Cluster headaches when its no more than 2 per day simply because the risk of the CH itself outweights the real risk of the sumatriptain causing a rebound headache.

If your getting no real relief on a 30/500mg single dose of co-codomol its unlikely any extra codiene would make a difference. If you think you have to have it then it really could be the morphine receptors giving you a kicking. Chat to your GP about NSAIDs instead. They can often head off a mild to moderate migraine on their own and they do work with 5HTs to produce better pain management.

You may need to take a couple of weeks off work as sick leave to get trough the initial withdrawal to avoid constant MOH. If you do not you could risk needing to take a far more prolonged period off work later. That is something else to chat with your GP about. You may be able to plan to do this into your work sched'. It may also be time to talk to work about reasonable adjustments to give yourself chance to get on top of this.

To give you an idea of managing chronic migraine I try to ration when I do use triptains.
My acute care runs like this and follows BASH recommendations and under the care of a consultant neuro'.
I also have domperidone suppositries so I can absorb the drugs I need to take instead of seeing them again.

Migraine pain level 1-3 NO pain relief- just use ice packs and heat packs and slow down.
Migraine pain level 4- 6 Start with 600mg Iburofen wait for an hour. If pain is still climbing thats when I reach for 5HT's
If that is enough I stop using drugs and aim to sleep/rest as much a possible if the pain continues I can take a further 2 NSAIDs that day.
Migraine pain level 7-9 add in 1 or 2 soluable solpodol on top of other drugs to try and pinch the worst bits of sharp pain. If that does not work adding in more co-codomol makes no darn difference whatsoever.
Migraine pain level 10 - call Gp for diazapam and if that does not work and it becomes a status migraine call the neurology clinic for advice.

Chat with your GP about your options and MOH and if need be ask for another appoitment with the neurology clinic to oversee you as you deal with this.

Katie, thanks that does help. The thing is that two 30/500 co-codamol taken each morning seem to contain the situation. I get the odd day when the pain gets out of hand so I add in one Zolmitriptan, the combination of the two again generally work. But, the minute I stop the 30/500 I can virtually guarantee a headache by mid-day which if not treated will require a triptan and more 30/500's, so I took the view that two a day wasn't/isn't such a big deal. The specialist thinks differently. I suppose she's thinking that the 30/500's are causing the headache by virtue of the fact that the pain gets worse if I don't take them. Of course she could be right, but as I said earlier I've had this problem all my life, and nothing so far has come along which does manage it.

In the past two weeks I've been trying to stop the 30/500's or cut down, or whatever, and the headaches are worse than ever.

I'm very reluctant to go down the NSAID route as I like most men my age (feeling old today) have a reflux problem for which I take an acid suppressant. Plus I've never found any success with them.

GP tomorrow for my seven minute chat!

Timj

Two 30/500 co-codomol tablets each day? Are you aware that this drug is only recommended for 3 days max as after that your body becomes dependent upon it?

Your not containing the situation doing this; its left you stuck in a MOH cycle. That is why you always get a headache as the opiate side wears off- its giving you a rebound headache as your body starts craving for more. Sorry but your taking 60 mg of an opiate derived drug - the over the counter co-codomol is 8/500 for a reason. Your specialist is right.

This is a very good drug but opiates are not the pain relief that really stops migraine in its tracks nor are they safe to take every day unless you are in one of the very few groups where the risks of addiction are less than not having the drug. {Cancer as an example} Your not managing the problem by doing this your merely surviving and sadly seem to have added MOH into the mix.

If you have GORD you should have a good drug that should suppress this. This may make it possible to consider other forms of analgesia that do NOT include codiene. For this reason its vital to get advice form a neurologist who specilaisies in primary headache disorders. There are no easy answers and finding the right preventative takes some doing but co-codomol is not a preventative for migraine.

This site has a good overview as well as some useful links inc. BASH guidelines for managing headaches.
http://www.patient.co.uk/health/Headache-Medication-Induced.htm


.

I concur with Katie - codine really should only be taken for a max of 3 consecutive days after that you get into the MOH cycle as Katie has said. But what is done is done.

The aim now is to get you out of that cycle. I hope the GP was able to help you get a plan in place on how to do this?

With regards to the Triptans there are some which you can take as a powder under the tongue and some via injection - so reflux should not be an issue.

I do feel that you should be under a headache neurologist - to help you find the best preventative. So you can be proactive and not reactive all the time.

As well as the pills, there is also DHE which can be given to try to stop chronic migraine - this is given via IV in hospital. There is also the GONB an injection(s) in the back of the neck, again used to stop chronic migs. There is also the new treatment of Botox, of which I am an advocate.

However, all these option will be there once the MOH is out the way.

Do let us know how you got with the GP

tee