Hi, I would like to hear from anyone who has been diagnosed with medication overuse headache.
I am struggling with my diagnosis on many levels. I feel ashamed and inadequate because I can't seem to implement the advice given to me or, if I do implement it, I find myself back at square one after a few weeks. I can't find a support group which I feel I need because I feel so alone with my problem.
I have been suffering from headaches since early childhood and taking regular medication for them. My headaches seem to be mainly triggered by certain foods and were usually preceded by vision disturbance.
Somehow, without really understanding how or when, a few years ago, I found that I was taking medication every day which is when I started to feel ashamed. I take a mixture of ibuprofen and ibuprofen with codeine at night.
Both GP and the National Migraine Centre explained the fact that I had developed medication overuse headache and that I would need to stop all meds for at least 6 weeks and after that limit them to 2 days a week. I have done this now successfully 4 times, once for over 12 weeks but after each time the headaches build up again and I am back to square one, too embarrassed and ashamed to return to a GP and feeling therefore condemned to live out my life taking medication. A thought which scares me because I know it can't be good for me.
I just feel I need to know that there are others out there going through the same!
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gobojo
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Hi so sorry you're having an awful time. I know exactly what you're going through, it seems at times, that the doctors only interested in how many tablets you take. We all know, we take too many tablets, but we have to have a life! I've done the 'cold turkey' no tablets for 8 weeks, but I ended up with the most awful migraines and had to cancel everything, as I was too ill. I then started taking medication again, sticking to just 8 triptans a week, but the migrane s continued and I was back to square one, like you. I'm now having injections from neurologist, with medication and take triptans 8 times a month. It's so hard to do the right thing, but at the end of the day, were all different and have to do what's best for ourselves to have a decent life. The neurologist was really understanding and understood the effect migraine has, on my mental health. Sorry if I'm not really helping you, but just know, I'm 65 and a lifelong sufferer, you're not on your own. Take care x
Thank you for your reply. It just feels so good to know I'm not alone. I feel like I'd really like to have a support group. It would feel so good to meet up for coffee once a month but there isn't a support group like that sadly. But your good wishes really help. You take care too x
I've had to go on "medication holidays", as they prosaically call them, a couple of times and have had two forced medication breaks bc of having children.There's nothing you can do but endure them. In my case I had to come of meds bc they thought I had Medication Overuse Headache, but when I came off them 3 months later I was still having them over 50% of the time, so Chronic Migraines was diagnosed.
So for the last 25 years I still can only take painkillers twice a week, although my neurologists thinks triptans should only be used 6 days a month so its a bit less than that really.
Ibuprofen is a nasty drug you need to stop taking it. If you have a proper diagnosis for Chronic Migraines you could get access to more suitable meds. Are the Migraine Centre diagnosing you for anything other than overuse?
No the Migraine Centre aren't prescribing anything else for the migraines. About 4 different prophylactic medications were tried but none worked. I think the plan is to try rimegepant once I can get through the 8 weeks holiday (anything less like a holiday is hard to imagine!).
Ahh you'll have to report back and tell us whether its successful!I've been on 3 CGRPs but sadly none of them worked for me but Rimegepant is a bit different bc it leaves your body much quicker so they can test whether CGRPs are going to be good for you or not. I think it's in tablet form instead of an injectable?
Good for you for reaching out for help on this forum.
I have been diagnosed with chronic migraine, and prescribed topiramate. After about 2 years I feel the drug is amplifying symptoms rather than toning them down. To test this hypothesis I have to reduce the dose gradually, then whether I ask for an alternative drug depends on how tolerable the residual symptoms are.
The headaches you describe sound like episodic migraines, though you don't say if you have a formal diagnosis or how often the episodes occur. Triptans are usually the go-to medication for episodic migraines, to be taken at first sign of onset until after symptoms abate. I'm not a medic but I imagine your docs would advise against long term regular consumption of NSAIDs like ibuprofen.
Thank you for taking the time to answer. I have a diagnosis of chronic migraine with medication overuse headache. The doctors won't prescribe anything until I have been through yet another medication 'holiday'. Just going round in circles at the moment and its hard not to lose hope.
From this forum I have the impression that chronic migraine can be difficult to treat effectively. How many different drugs have you been prescribed? If 3 or more have failed you are eligible for aimovig (ajovy) injections on the NHS, which would cost around £5k a year privately.
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Medication Overuse
Constant headache .. Really worried 
Nighttime headache
