I’ve suffered from migraines for most of my life, but 8 years ago they got much more frequent, up from 2 a month to 10-15 a month. There was a clear link between this increase and developing Adult Onset Still Disease and I often discussed this with my GP and Rheumatology specialist but no improvement has been forthcoming despite many attempts at lifestyle change and new treatments. In desperation my GP finally referred me to a specialist migraine clinic who just prescribed more meds.
So frustrated by what I considered to be a “less than comprehensive” assessment and treatment plan from the specialist I decided to do some more research myself (I’ve read several books over the years that have never had much actionable advice) and I settled on Coping with Headaches and Migraine by Alison Frith.
Imagine my surprise as I read this book, a summary of the best advise from the London Migraine clinic, and what unfolded was an exact description of my plight, what had caused it and a series of clear actionable steps to address it. Not only was the advice actionable, but it contradicted most of what I thought I had already known and was so clear and simple that I was amazed that in dozens of meetings with doctors almost none of it had been mentioned.
Here’s a summary of the key points with enough context to allow readers to see if the advise is applicable to them and to understand why I was so shocked.
- People who suffer from chronic pain, like people with Rheumatoid Arthritis, who also suffer from Migraines and take pain killers for their Arthritis will often develop chronic migraines as well. Often going from 2-3 times a month to 10-15. That’s exactly my situation, the risk was never mentioned by my GP or Rheumatologist
- The worst pain killers for someone to take for Arthritis if they suffer from Migraines are mixed Paracetamol and Codeine, even though they are often the most effective. I was prescribed CoCodamol 30/500’s and had them on repeat prescription.
- This problem is well documented in the book “Medication Overuse Headache develops in headache-prone people. People who do not have tension-type headaches or migraine do not tend to develop MOH if they use painkillers for other conditions such as arthritis or back pain. People with these conditions who also have migraine should take particular care”. So it’s amazing that a phenomenon that’s considered “Overuse” that’s documented throughout my medical history and my repeat prescriptions was never spotted.
- About a year ago I found out about rebound headaches and Codeine I discussed this with my GP and agreed a strategy of reducing the CoCodamol to 3-4 times a week and the rest of the time using either soluble paracetamol and caffeine or Ibuprofen.
- Both my GP and Specialist also prescribed Triptans (not pain killers but brain chemistry modifiers) I took them for a couple of months but noticed my headaches were just as frequent but now more severe. Not very good advice
- This is why this wasn’t very good advice, (more quotes from the book):
- The longer that MOH continues, the more difficult it is to treat, don’t delay seeking help – the specialist just gave me more meds, no exploration of my concerns over rebound headaches
- Avoid changing one drug for another. This is just as risky for developing MOH – contradicts completely the advice I was given. In fact the specialist didn’t even ask me what pain killers I took for Arthritis
- If you have MOH, all painkillers and Triptans must be stopped completely – otherwise supportive strategies will not help. contradicts completely the advice I was given
- Clinical studies suggest that oral aspirin (600–900 milligrams [mg]) has the best effectiveness. For 40 years all of my prescriptions have been for Paracetamol + other stuff, never had aspirin been mentioned
- Tips for avoiding caffeine-related headache Minimize caffeine in your diet if you can – never mentioned
- Combination drugs with caffeine and Aspirin or Paracetamol can lead to medication over-use more quickly – over 50% of the over the counter remedies now seem to also contain caffeine
- Finally the specialist prescribed Topamax a migraine prevention drug also used to treat epilepsy - after 2 days though it was seriously messing with my brain, I couldn’t focus, couldn’t recall common words, sense of taste changed and body felt “out of alignment” with my brain, as if my sense of where my body should be and where it actually was was 30 degrees out of sync – so I stopped those very quickly!!
Ok so where am I now:
- Stopped the regular CoCodamol for 2 weeks while I was working, but still took other pain killers to keep me going during headaches or joint/muscle pain
- After 2 weeks stopped all pain killers, and took a weeks holiday, kept healthy and exercised every day, reduced caffeine. I had headaches every day and loads of shoulder and arm pain – I’m currently 6 days into this and the headaches are still getting worse
Where do I hope to get to, again quotes from the book:
- Limit triptan use for migraine to a maximum of ten days per month. Limit painkillers to a maximum of 15 days per month. Remember that it is the number of days that you treat that is important – not the number of doses in a day. Avoid any drugs containing caffeine, codeine or other combination painkillers – this is going to be quite a challenge as when my Arthritis is bad I depend on pain killers to work and sleep
- Naproxen can be used to aid recovery from MOH and replace your usual method of pain control, This non-steroidal anti-inflammatory drug is prescribed in a six-week reducing regimen – should be able to use this in about another 10 days time when I am back at work the the bad days, it works for body and head pain
- Clinical studies suggest that oral aspirin (600–900 milligrams [mg]) has the best effectiveness and take it soluble with an anti-sickness medications to help nausea and – importantly – to prevent your gut from shutting down – this is what I hope to use on the 10 days a week when I’m allowed to be in pain
- Studies show a relapse rate of up to 40 per cent within five years, so you must be on your guard
In summary “MOH is common in those who seek help for their headaches. It is reported in at least ten per cent of those attending headache centres in Europe and up to 70 per cent in the USA”