Migraines ~ Not ‘just’ a headache.

Anyone who’s had a true migraine will tell you that it isn’t simply a bad headache. If you have a bad headache…it’s not automatically a migraine.

When I have a migraine attack it strikes down quick. Some people have warning signs where they have an aura (flashing lights) before the headache begins & then the head pain lasts an hour or two, but the tiredness lingers for a couple more days. I’ve had that type before, but not many of them. My paternal grandmother suffered with them a lot. Sometimes she’d have 3-4 a week at her worst. In later life she had this aura type of migraine, but before she had children she had the type I have with the nausea & the vomiting as well.

Migraines are much more common in those with a family history of migraine. My paternal grandmother had them & so did her father. My paternal uncle also gets them. On my mums side…my maternal great-grandmother suffered with them too. Naturally, my siblings & cousins don’t actually have them – I was fortunate enough to pull the short straw in the genetic whirlpool with that one. 🙊

They began around the time I was 11 & my periods began & it was the same with my grandmother..there seems to be some hormonal trigger for some reason that’s specific to periods. I began puberty around 9yo, but it was the beginning of menstruation that specifically triggered the beginning of the migraines. My Nana’s migraines stopped once she was pregnant & had children (again hormones), but unfortunately the next hormonal change happened with the menopause that brought them back again. I have no idea if that will happen with myself or not. Bizarrely..I don’t have monthly migraines..for some that is a trigger, but for myself I find that stress is the biggest trigger, as well as fluorescent lighting. I also had a lot before my EDU admission when blood sugars were often very low. Medication changes or withdrawals are also a trigger.

Like I said, I don’t suffer the aura migraines that much, but I do have the non-aura type. The only slight warning sign prior is a tension headache, but sometimes we all get those, so I don’t automatically think it’s going to lead to anything more. Another subtle sign is a slight increase in sense sensitivity, but I also have ASD & my senses are already hyper-sensitive, so again..not always that obvious. When the migraine arrives it arrives very swiftly. Some migraines are also longer than others – I happen to get lengthy ones where they last most of the day. If a migraine starts in the morning..it’s usually going to last for the entire day & I’ve had a couple that have lasted for around 36hours…36hours of pain & an inability to even keep water down. When it’s over it’s then a couple more days of tiredness that follows, as your body recovers & then ED wise..I find it can be a challenge, because illness is one of my ED triggers, so the sooner I can manage to eat something..the better, because the longer I leave it the scarier it gets again.

So..senses. Vision. It feels as though someone is squeezing one of your eyeballs from behind. It’s usually just the one side, but occasionally I’m unfortunate enough to get both eyes feeling as though they’re being attacked. It’s physically painful at that point to open your eyes because any kind of light just intensifies the pain & light is completely unbearable. I have been known to have to wear sunglasses indoors (including a staff member in the hospital allowing me to wear them in the dining room post-migraine, so I didn’t skip a meal). Also, in the winter… car headlights & back break lights are just hideous! Whether I have a migraine or not I find them too bright, but when a migraine is present..the majority of the journey will be spent with my eyes closed. Even looking at dimmed phone & laptop lights is equally as painful too. The only relief is a completely blacked-out room.

Sound. If I have a migraine I do not want to hear anything. It’s too painful. The only thing I want to do when a migraine arrives is to lay in bed with the curtains closed & pure silence in the house. Each noise feels like someone’s hitting your brain with a drum stick whilst it ricochets & pounds along the inside of your forehead.

Taste. This has nothing to do with the ED, but everything to do with the migraine & for someone who does actually have quite a sweet tooth…I can not stand hearing any kind of food talk. Just the idea of that in my mind at the time is enough to trigger my vomit reflex, because at the time I’m also really nauseous & for whatever reason… when I have a migraine my body rejects any kind of food or fluids (it doesn’t even bare a tolerance to small amounts of water or medications).

Touch. My body will go from hot to cold, to hot & to cold & just repeats over & over…it’s more the case when I’m about to be sick, but then after I feel freezing when I get back into bed, but when I wake up really hot again…I know I need a bowl by my side. TMI, but…I hate clothes when I have a migraine as well..I don’t really know why – I’m the person always covering up in the house & going to bed wrapped up for winter, but when I’m ill..I just want to be in my underwear & maybe a vest top, but anything else annoys me. As much as I’m moaning about migraines here..I’m actually not at all needy when I’m ill. I can’t bare anybody near me..I just want to be left, so if anybody comes over & starts stroking my head..well..they’ve quickly learned not to. 😂

Smell. I can not tell you how extreme this sense is. I’m autistic & my nose is already extremely sensitive, but during a migraine I think I could out-sniff some dogs. Even nice subtle smells that I like I just find revolting & again…the gag reflex starts. 🤢 Perfume smells are the worst, followed closely by food smells! Recently my mum arrived home with a baguette, but I was in bed so I had no idea what she’d bought from the shop. I was upstairs, half asleep with my bedroom door closed & I started to smell fresh bread & as it turned out..she was in fact eating a sandwich made with a baguette she’d brought back. Bread isn’t a particularly strong smell unless you’re in a bakery or making it yourself, but I managed to even sniff that one out through a floor and closed doors. 😆

Aside from sense sensitivity, nausea, vomiting & an intense pain in your head…there’s also the simple problem of standing up or generally just rolling over in bed…I find movement just makes everything all the more painful. When I get particularly bad ones… I lose my ability to communicate. You could ask me something, but don’t expect a response. I’ll try to say something but it will likely result in groaning or unrecognisable sounds & sometimes my brain just can not register at all & I’ll be physically incapable of giving any kind of a response – even my limbs feel too heavy to move at that point, so communicating with gestures is also out of the question.

I could list so many examples of the situations I’ve been in where a migraine has caught me off guard…all of which are embarrassing. I dread developing one whilst out because there’s a possibility that I won’t make it home & that has happened a few times. One time I was found by a couple of older ladies in the street – other people had passed by without saying anything to me, but these two ladies went out of their way to fetch their car & drive me home. On that particular occasion I was just sat on the street with my eyes barely open & I just couldn’t walk anymore, I also began vomiting, but instead of being asked if I was okay by anyone I was just left in my semi-conscious migraine state…I suppose people have their own judgements as to what they thought about me & I bet zero of them thought it was because I had a migraine, so I can’t be too annoyed, but it does bring home to you how many people are too afraid or lacking in care to actually stop for a person who may be in need, but at least that’s taught me to check on others more when they aren’t looking well in the street, because you just don’t know what the circumstances are. When I get that bad though…I couldn’t care any less about anything. I don’t feel embarrassed..I just want to sleep & to feel better again..that embarrassment part of my brain isn’t functioning so much at that point. I had them in the hospital too – I had one on the second day of my ED admission & at first..they thought I was saying I was unwell to avoid lunch, but when I walked into a bright dining room filled with the smell of lunch & a noisier environment..I sat down & ran straight back out & proceeded to vomit in the corridor..they then realised that I was in fact telling the truth about my migraine history. I don’t blame them for jumping to that conclusion..it was my 2nd day there & I had Anorexia, so I’d have probably thought the same.

Migraines genuinely aren’t ‘just a headache’ I find it so annoying & a bit patronising when people say that. I’m lucky…there are people who get them more often than I do & there are people who try different meds without success. Some of the severely impacted people are disabled by migraines because they have them so, so frequently (pretty much more than half the days each & every month). I’m lucky because I may not have any for a while, but then get a few in a short space of time. I’m also lucky because although I haven’t found a Triptan (typical acute migraine med) that’s been very effective..I take a preventative medication daily (that also helps reduce anxiety) & it’s really helped – the evidence is there that it’s working when the pharmacy haven’t had it in stock for a day or two & when that happens..I’ve always ended up with a migraine when I’ve been 20+hours without it.

I think it’s rare to have any person that doesn’t have some kind of issue however mild or severe it may be. It’s all a learning process – finding out what helps & what doesn’t & learning about potential triggers that may make it worse. Sometimes it’s also about accepting that some things don’t always have a cure, but you can at least improve quality of life. My migraines aren’t going anywhere right now – there isn’t a cure. It’s also not a prioritised area for funding/research because there are obviously conditions that are more serious. They’re awful when you have one & at the time it’s the worst thing ever, but when you’re not in that moment it’s always worth reminding yourself of what you have to be grateful for. I’m thankful that as debilitating as a migraine might be in the moment..it doesn’t last for that long in the context of life..it will pass. I also have ways of managing the condition & a medication that successfully prevents me from getting as many as I used to.

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