In the US, June 2019 is National Migraine & Headache Awareness month. In honour of that, I thought I’d share my story with migraines. Chronic migraines are hugely debilitating and, while I don’t have them as bad or as frequently as some, I wanted to show that they are far more than ‘just’ a bad headache.
Relentless and all-consuming, migraines can be anywhere from an occasional issue to a constant nightmare. With a range of symptoms extending beyond a severe headache, they can affect your vision, create nausea, make you exhausted, dizzy, and generally leave you feeling like hell.
Once Upon A Time…
The story begins in my high school years, with very rare migraines. I don’t even remember them, that’s how rare they were, it was an odd one here and there. During my early 20s, I might have one in January, nothing in February, another one in March. It was sporadic, with months where they’d take a holiday. So not that bad at all really. Skip ahead to the past couple of years since my first surgery in 2015, and migraines have been a regular feature of my life, gracing my brain with their presence three or four times a week on average. Sometimes more, not often less.
The Migraine Experience
A day with migraine is a day lost. They render me useless. It starts with excruciating pain in my eye, then moves to nausea, light sensitivity, problems with vision, and so on until I can’t think straight, can’t see, and I’m throwing up. Thankfully in more recent years prescription Sumatriptan has been successful in evicting them, but it takes 1 & 1/2hrs to work and I’m left feeling like an empty shell for the rest of the day. Such medications are also restricted, so many with chronic migraines, such as myself in the UK, may find doctors will not prescribe nearly half as much as you need. This means some attacks you simply have to ride out, even if they bring you to your knees.
A Useless Neurologist
I’ve been through diary tracking and numerous lifestyle changes in an attempt to identify triggers or spot correlations, but nothing has been found. There’s nothing to predict or prevent them. No treatment touches my migraines apart from Sumatriptan. A rather unhelpful neurologist made my appointment into a competition, telling me he had the worst migraines, worse than mine, and that he grew out of them when he turned 35. In response to my look of frustration and query as to whether anything medically could be causing them, he simply said I’d probably “grow out of them” when I’m 35 like he did. Only a couple of years to go then. I wonder if I’ll turn into a pumpkin, too. Needless to say, the support around migraines has been, in my experience, very poor.
A Mix Of Headachy Hell
Living with migraines can be incredibly unpredictable and resultantly impractical. You never know how you’ll feel or when they’ll strike. I’ve lost so many days, probably adding up several months of life, to migraines. Like many others with migraines, I also have other health issues, from Pernicious Anaemia and connective tissue disease, to fibromyalgia and a stoma. When I don’t have a migraine, chances are I have a headache. Most days they’re what I class as ‘low level’ headaches, which I’ve lived with for years and can manage, probably because I’ve grown used to them. Other times I get bad headaches. Migraines are in a class of their own. Having a few of these a week is a not a party.
I often get postdrome effects (aka migraine hangover), which can leave people feeling worse for wear, very sleepy, and generally yuck for hours after the migriane has gone. For some reason lately I’ve been really poorly after the migraine has gone; I don’t know if it’s severe postdrome (aka migraine hangover) or a coincidence, but it’s happened a few times now. A couple of weeks ago, for instance, I had a migraine in the morning. Sumatriptan got rid of it but I was left feeling like I had nothing in me, I wasn’t ‘with it’ at all and couldn’t do anything, I don’t even remember much of the day, just that I didn’t have energy to walk, I had a fever & delirium, and literally crawled to the bathroom and back into bed at one point because I couldn’t stand up. For 24 hours I felt like I was dying, and seriously wondered if I was. I’ve no idea if that’s a weird migraine experience or something else entirely. I’d be interested if anyone has any thoughts or similar experiences.
It’s not always so bad, however. Sometimes I’ll have Sumatriptan, do the usual routine, and the rest of the day will be fairly ‘normal’. It’s unpredictable, but there are better days, too.
Last year I also had my first experience of cluster headaches, several delightful weeks of hell.
What To Do When You Feel Like Poo?
Sorry, I really wanted to fit a rhyme in and that was the only one that worked!
I’ve posted recently about a few migraine & headache helpers. There are a few things you can try, like ice packs, rollerballs, muscle pain rub and even TENS units, just to make dealing with them a little more bearable. Everyone is different in terms of what works for them, but the general response to bad headaches and migraines is to retreat to somewhere dark and quiet.
The only thing that even touches a migraine for me in terms of medication is Sumatriptan. I tend to take this, then lie in my room with blackout curtains, no sound and a cold gel eye mask on my eyes for the eye pain. Once this needs to go back in the freezer, I’ll swap it out for a sleep eye mask just to ensure total darkness. And I’ll ride it out. What’s difficult to deal with, aside from the pain and the myriad of other symptoms of a migraine, is the inconvenience and unpredictability. It’s about learning to go with the flow and accepting how it is, rather than getting too frustrated and annoyed like hell at it.
You’re Not Alone
If you suffer with migraines, please do seek medical investigation and advocate for yourself – keep pushing until you get some kind of testing, support and treatment. It may be that, like me, there’s no known reason nor any identifiable triggers, but it’s important to rule out underlying conditions. It can be a lonely experience so don’t suffer in silence. And please know that you are not alone.
Do you struggle with migraines? Have they changed in how you experience them or in their frequency over the years?