Migraine Misconceptions

So you may or may not have seen that two weeks ago I a busy little bee, being interviewed by journalists about migraine and the new injection that’s been designed specifically for migraine sufferers – the first migraine specific medication to be designed in 20 years. The first was an interview with the Daily Mail, the second was a TV interview with the BBC, which you can find on my Features page. However, seeing some of the responses and people’s attitudes to the media attention around the new injection has really surprised me. Migraine misconceptions are rife in society, so I thought I’d devote today’s post to quashing some of them.

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For those of you who don’t know, let me just give you a brief summary of my experience of migraine. My migraine started when I was 11 and never went away. The pain is there all the time, but at varying degrees and with other symptoms joining in as and when. This is because I’m severely photosensitive. Because of how sensitive to lighting, colour and patterns I am, my brain never has time to recover. My precision tinted lenses help with this a lot.

When I was 11, my additional migraine symptoms included slurred speech, weakness and numbness down one side, nausea and co-ordination difficulties – hemiplegic migraine attacks. By the time I was 13, I had also started loosing consciousness with my migraine. Ten years down the line we found out this was caused by basilar type migraine, a rare form. Getting this diagnosis made such a difference. I was put on specific medication that helps this type of migraine and we were finally able to get the loss of consciousness under control.

My biggest migraine trigger is lighting, but I’m also affected by cheese and wheat. A skin prick test identified that I was allergic to these and cutting them out reduced the pain I was experiencing, but not the additional migraine symptoms. We’ve also kept food diaries to look for patterns in what I’m eating and my migraine worsening. There weren’t any.

So, now you know a little about me and my experience of migraine, let’s look at some of the common migraine misconceptions.

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Migraine Misconceptions: Migraine Is ‘Just A Headache’

No, just no.

Let’s start with the head pain aspect of a headache versus a migraine, since this seems to be the only thing people making this assumption are considering:

The best comparison I can give is that comparing a migraine to a headache is like comparing the pain of a deep wound that cuts through nerves and into muscle with a surface cut that doesn’t even draw blood. I’m not trying to dismiss the standard headache, they aren’t nice. But they also aren’t stabbing pain that migraine causes. A pain that’s so bad that often people are unable to move, speak or open their eyes. The only exception to this are cluster headaches, sometimes referred to as suicide headaches because the pain is so bad. In my opinion, these need renaming because the term ‘headache’ doesn’t accurately cover the symptoms people with this condition experience.

Now let’s look at the other neurological symptoms that someone with migraine can experience, which you don’t get with a headache. Nausea, vomiting, visual disturbances, dizziness, speech difficulties, loss of speech, co-ordination difficulties, weakness down one side, loss of consciousness and more!

Do we all agree that migraine isn’t ‘just a headache’ now!?

A little side note: People who use the term ‘headache’ when discussing someone who experiences migraine, they are perpetuation this misconception and reinforcing the stigma attached. If this is something you do – stop it, STOP IT NOW!

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Migraine Misconceptions: Just Take Paracetamol And Get On With It

Not just one of the migraine misconceptions I’ve experienced, but something that seems to be thrown at most people with a chronic illness at one time or another.

When my migraine first started, my Mum took me to the GP, as you do. He prescribed me paracetamol, which did absolutely zilch for me. So Mum took me back a few more times, explaining that paracetamol just wasn’t doing anything. The GP had the nerve to tell my Mum to just keep giving me paracetamol and not to come back with the same issue again. Unsurprisingly, we changed doctors!

For the vast majority of people with migraine, paracetamol does naff all. It’s just not strong enough to touch the pain we experience. It also doesn’t act quickly enough to be effective for most migraines.

This is another good example of how migraine isn’t ‘just a headache’, because for a lot of people paracetamol will help a headache. Either taking it away completely or at least reducing the level of pain a person experiences.

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Migraine Misconceptions: It’s Caused By Stress

Ok, I know that stress is a common trigger for some people with migraine. But it isn’t for everyone and it certainly isn’t for me. Yet I get quite a few “Don’t get stressed, you’ll make your migraine worse” comments.

Firstly, I have very little control over my stress level. Of cause there are things people can do to reduce their stress, and believe me I do these, but stress is also a part of life. Secondly, stress being a trigger for someone’s medical condition isn’t their fault. So let’s loose the “you’ll make it worse” attitude please. And thirdly, stress doesn’t affect my migraine! So naff off!

Now, stress does affect my eczema, it always has and probably always will. Yet I’ve never had anyone tell me not to get stressed because I’ll make my eczema worse. Interesting how people have preconceptions about one condition and not another, isn’t it!?

I find it so frustrated when people tell me not to get stressed because it’ll affect my migraine. Even if stress was a factor in my migraine, it’s not a helpful comment.

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Migraine Misconceptions: You Can ‘Cure’ Migraine With Diet, Exercise And Supplements

Seriously!? If it was that easy, we’d all have made these lifestyle changes and be fine. No one wants to endure a migraine and most of us would do anything it takes to reduce the severity and/or frequency of our migraines. So comments like this are not only unhelpful, they’re harmful as they assume that we aren’t doing everything possible to help ourselves. This is another one that a lot of people with various chronic illnesses hear on a regular basis. If you say this to people, STOP IT NOW!

I think the majority of people reading this post will be those who don’t make these ridiculous assumptions. But it’s shocked me how rife migraine misconceptions still are, so I thought I ought to address some of them. This isn’t an extensive list and a number of the misconceptions mentioned aren’t just limited to migraine. They’re things that people with many different chronic illnesses find themselves facing and it’s got to stop!

What migraine misconceptions have you experienced?

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Tania Jayne

  • This is such an important topic! Thank you for sharing. I suffer from migraines sometimes, and the nausea that comes with it is unbearable!

  • Soso ❄⛄⭐

    It’s sad to see that people in this day and age still make these misconceptions, but I’m glad you wrote this! Clears up some of them that’s for sure

  • Sam Coleman

    I also have hemiplegic migraines and I have started calling them ‘hemiplegic attacks’ rather than migraines to avoid the ‘migraine’ misconceptions. I have silent attacks…I don’t get the head pain until after the attack has settled and I’m in the hangover period.
    I get very frustrated with people who compare the attacks I have with headaches…I often end up in hospital as I am blind and paralysed.
    I am glad that the media has made migraines more of a topic of conversation again but I did get a little stroppy when they continued to refer to headaches when we all know own it is so much more xx Good luck too all migraine warriors xx

  • I’ve never had migraines, just awful headaches which don’t compare – I can’t imagine how awful migraines must be x

    http://www.ofbeautyandnothingness.co.uk

  • I’ve often been told that I couldn’t have a migraine if I wasn’t seeing any weird dots/visual disturbances. Drives me bananas. For me, migraines make me extremely nauseous to point where the tiniest movement of my eyes or head will make me vomit. It worsens my vertigo and my tinnitus gets super loud. In fact, this was exactly what happened to me this morning out of nowhere. I was okay then suddenly unable to talk, open my eyes.. anything. I couldn’t even communicate to Chris that I needed help. I’m tired of people with headaches saying they have a migraine.. like, no. Grrr. Sorry for rambling! Xx

  • Lady Writes

    I am SO with you on this! I’ve had Migraines since I was a teenager and they get worse as I’m getting older. I’m now medicated for them from my neurologist but I still get them once/twice a week and it takes ages for the medication to work…and sometimes it just doesn’t. People who say “It’s just a headache” drive me mad. It’s nothing like a headache. A migraine leaves you completely unable to do anything. I for one will be waiting to find out more about the injection! x

  • Emma Bradford

    oh wow, i cant believe people say these things! Ive only ever experienced migraines 2 or 3 times but they are horrid – i feel for you xx

  • Emma Parry

    This was such an interesting post to read. My dad and sister suffer from migraines but fortunately I haven’t had one. I really feel for you and other sufferers as they sound horrific. I’m glad you are managing to control your symptoms to some extent x

  • I found this very interesting to read.
    I really feel for anyone who suffers with them. I have only ever had two and they were horrendous.

    http://littlemissmelanie.com

  • Shelley Busby

    I’m lucky to have only experienced one or two but working in a pharmacy I can see how badly people are affected by them & there’s no easy fix!

  • I am sorry to hear about your pain. This is not a joke at all, it causes severe stress as well. I hope you get well and pass this.

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