A crappy anniversary: nearly 365 days of migraine

On December 4th 2018 I was struck with my first ever migraine. I can remember the exact time and place it started – 8am at my desk in the office. By 9am I could barely open my eyes so went home, to bed. I pretty much stayed there for 3 weeks, other than trips to the doctors and the hospital for various medications and tests. Nothing sinister was found, but no one could explain why, 3 weeks after it first started, I still had a migraine. Eventually the pain started dying down and I was able to cope with some light and noise again and I could leave my room-cave enough to enjoy Christmas but the pain was still there, niggling away in the background. Lights still bothered me and too much stimulation sent me scurrying back to a quiet dark space.

A week or so into January the pain peaked again, and again lasted for weeks. This would become a pattern. Several weeks of ‘background’ pain, maybe a 3/10. Annoying, constantly there, but I could just about get on with things. Then the pain would peak to a 8 or 9/10 and last from several days to several weeks. At this point I could barely do anything, I would need to be in a dark, quiet space pretty much all the time. Screens were a no go and I couldn’t really cope around the kids because of the noise.

Throughout this time I was back and forth to the GP and saw a neurologist, who sent me for an MRI which picked up an infection in one of my sinuses which COULD have been causing the pain. I wrote about it here and had an operation which I hoped might solve things. But it didn’t.

To date I have tried every acute medication going and a whole bunch of long term preventatives which I wrote about here, but since nothing helped and all had side effects, I am currently mostly med-free other than a daily anti inflammatory which takes the edge off a tiny bit.

My new neurologist confirmed that I am suffering from something called a New onset Daily Persistent Headache (NDPH) and I am one of the lucky ones who experience this as a migraine. One long, constant migraine which has so far lasted almost 365 days and has no end in sight. There is no cure, the only option is to cycle through a long list of possible preventative medication, none of which are guaranteed to help and all of which have side effects. I’ve pretty much exhausted my options with these now.

So where does this leave me? Well, the one thing I havent tried yet, and for which I am on the waiting list for, is botox. Not the wrinkle reducing kind (although that would be a side effect I could deal with), but the kind that blocks nerve pain. There is no guarantee it will help, but I need to keep moving forward, trying the next thing, so hopefully that will start in the new year.

The other option is to figure out how to accept this constant pain as part of my life now. To continue to make the most of good days and accept the crappy days will happen, but always eventually pass. This is something I’ve been finding harder to deal with as the weeks and months slip by so I have started weekly sessions with a psychologist to help make sure I have an outlet and avoid spiralling into increasingly negative thoughts.

A couple of nuggets of hope have sprung up though. One is the possible introduction, at some time in the future, of a new type of migraine drug which I would be a perfect candidate for but at the moment NICE have failed to approve it’s use in England and Wales (if I was still living in Scotland I would be grand!).

The other hope is that because of the sudden onset and lack of obvious cause, there is a chance that one day, just as suddenly, it will just stop. That is the dream but in the mean time I will continue hunting down new meds and treatments wherever I can, and focussing on keeping positive. And you know what helps with this? Christmas! I’ve been getting snarky comments from friends about my super early celebrations but the whole thing – the fairy lights, the mulled wine, the movies, the kids excitement – makes me happy so I am embracing every moment of Christmas build up, no matter how early in November I started 😁🎄❄

All dressed up ready for a family Christmas photoshoot ❤

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