When I was first diagnosed with migraine, my GP didn’t indicate that there was anything more to learn or give me any further information beyond: “Just take these tablets when it happens.”
After moving cities, changing to a new primary care provider and being seen by actual experts in the neurology department of the hospital, I learnt a whole lot more about migraine and things really started to fall into place in my understanding of my experience of the disease.
It was wonderful not to feel like I was going mad. Probably the biggest moment that illustrated that, was when I talked about my ‘migraine hangover’ and was told that it was a totally normal ‘postdrome’ experience.
That was when I finally learnt about migraine prodrome and postdrome – the effects we experience before and after the migraine attack itself. I wanted to share what I learnt with others in case they are struggling with the same issue, but I would encourage you to speak to your doctor, nurse and specialist to get all the information you need to arm you with knowledge.
The prodrome phase
It would be easy to think that prodrome refers to aura, but actually, for those that have migraine with aura, the aura starts after prodrome, immediately before the migraine.
A lot of people I speak to who don’t know much about migraine (just as I didn’t until mine became chronic), think that everyone with migraine experiences aura. I think this is because it’s one of the things that has entered the general knowledge sphere around migraine, so they are surprised when I tell them that only about 10-30% of people with migraine have migraine with aura.
For people with aura, it can be considered their starting pistol and they can often predict how long the aura will last for, and what will happen when the aura has gone.
Like the majority of people who live with migraine I don’t experience aura, which means I don’t have that starting pistol to alert me to the incoming migraine. This means I have to pay a lot more attention to my prodrome symptoms to understand when a migraine is likely to happen, so I can be ready to take my medications at the right time.
Every time I’ve had to meet with the occupational health adviser at one of my jobs, I have had to go through the process of trying to explain prodrome, and how it can vary as this would impact when I would have to leave the office. It’s hard for many people to understand that although my migraine is chronic, the experience of each migraine i different and it’s not always easy to recognise the symptoms.
What frequently surprises people when I tell them, is that more often than not it isn’t me who identifies that I am in the prodrome phase, but my husband or my close friends, as they can see the changes in me easier than I can see them in myself. Despite no-one being able to feel what a migraine is like from the outside, seeing the prodrome symptoms from the outside can give a much clearer picture.
I usually (but not always) have a building headache through the prodrome phase, focussed on one half of my head. You would think this alone would be enough to identify prodrome, but not when you also have chronic daily headaches, or even just frequent headaches that you’re used to ignoring. When you have programmed yourself to ignore headache pain, then you’re much less likely to recognise the specific type and feel of the headache that you’re experiencing, which is often the warning signal.
One of my more reliable, but very late prodrome symptoms, is a runny nose. Of course this doesn’t happen every time, but if I am questioning whether I am overreacting to other symptoms and I get a runny nose, I know what I am in for – it’s time to batten down the hatches, because the storm is imminent.
Sometimes I get food cravings, usually for something salty and sweet, but it is hard to tell if this is a food craving related to prodrome or if I just really fancy eating something in particular.
Other times I completely lose my appetite and trying to force food down feels like trying to eat ash.
Aphasia (when I can’t find simple words or when I can’t understand what people are saying) is much more specifically related to migraine for me. I only experience it in prodrome or during a migraine, but it is very hit and miss as to whether I will even have aphasia, so it is in no way a reliable guide.
Even when I do identify that I am in the prodrome phase, it is very hard to know how long it will be until the migraine attack hits. It could be minutes, it could be a couple of hours, or it could even be a day or so until it starts. It surprises even me, that after the vast amount of migraines I have had and how frequently I have had them, I still can’t actually reliably know when one is coming.
Keeping a migraine diary and writing down anything that seems slightly unusual will help you to identify what your own prodrome symptoms might be.
The postdrome phase
I don’t tend to refer to the period after the migraine as postdrome, rather I refer to it as ‘the hangover’, because that is what it usually feels like – a really bad hangover.
I have found that this part of the migraine experience is most relatable for people who don’t experience migraine themselves. When I have been back in the office after a migraine, but am still in the postdrome phase, people think that because I am back at work I am past the migraine. I explain that I am actually in the final phase of the migraine and how it is very similar to a bad hangover.
Sometimes I can see in their face as they flicker back to a memory of a bad hangover and I see them recalibrate in front of me what they estimate my experience of the past few days to have been.
Those hangover-like symptoms always include a raging thirst for me. An absolutely, unquenchable thirst. It is also usually accompanied by a sensitivity to light, although usually less severely than during the migraine itself.
The fatigue and dizziness are some of the more difficult aspects to manage. Since I had just gone through a migraine attack (which usually means three days of confinement to my bed) I really want to be able to get up and do things afterwards. But my body just crumples underneath me, even when I try and do the simplest of things.
Although I feel like I can finally think again, after the brain sludge of the migraine, I find I still can’t focus. I would begin to do a task and just zone out. It’s like I can’t keep things right in my head.
Sudden sleepiness is another symptom. I would feel like I am back to feeling more normal and then I would just fall asleep without realising how tired I must have been. Despite all the resting during a migraine, an attack remains exhausting.
Just like a bad hangover, postdrome sometimes includes nausea and vomiting too, which unfortunately aren’t limited to the migraine phase itself.
Of course, the severity of my postdrome symptoms varies from migraine to migraine and sometimes I don’t seem to have a postdrome at all, making it very difficult to know, even when the migraine is over, what I will be capable of doing and what will still be beyond me.
Understanding, and importantly having those around you understand, your prodrome and postdrome symptoms is important in how you live with migraine. Having other people identify my prodrome symptoms has helped me so many times, and managing expectations of what I am capable of after a migraine is just as important as people understanding how debilitating the migraine itself is.
NPS-IE-NP-00158 November 2020