Everybody’s An Expert on Migraine

As ever with the Chronic Life series, this post is made up of my opinions based on my experiences of living with Chronic Migraine and now, it turns out, Chiari. Some days I feel positive, so days I rant & some days I fall silent altogether. This post may be a little on the ranty side but I’d love to hear your views in the comments (where I approve comments individually to ensure that trolls get no joy from me or anyone commenting). 💜 K x

Migraine is a strange thing. Unlike rarer disorders, it is a disease that a lot of people have heard of. It has been my experience though that while lots of people THINK they know exactly what Migraine is, many actually do not. 

The public in general may not be aware that Migraine impacts sufferers in a variety of ways and the frequency of attacks ranges from the Episodic Migraine sufferer who experiences one or two attacks a year to patients like me at the far end of the Chronic spectrum, for whom Migraine is a daily struggle. Other points on the Migraine spectrum include Episodic patients who experience anywhere up to 14 days of head pain per month with 7 of them being migrainous in nature (anywhere above this is termed to be Chronic) and the Chronic Migraine sufferer who has 15 or more days of head pain per month with at least 8 being migrainous, who may have pain free days in between. These are just a few examples of how the frequency of attacks can vary from patient to patient.

I have noticed that despite Migraine impacting on people’s lives to a variety of extents, many people view Migraine as a minor inconvenience and expect every sufferer to only have attacks now and again and to bounce right back  immediately after an attack. I have even (rarely, I’m glad to say) heard people who themselves live with Episodic Migraine express disbelief that Migraine could be so frequent and debilitating that it constitutes a disability. The attitude that ‘their Migraine can’t possibly be that bad, I manage mine fine’ is galling for a Chronic sufferer to hear. It adds to the stigma surrounding Migraine and the stigma is a huge problem.

The belief that Chronic Migraine ‘can’t be that bad’ makes life even harder for sufferers. Trying to convince others of how just how devastating an impact Migraine is having on our lives is exhausting and stressful. It is for this reason that I can not forgive the occasional Episodic sufferer who contributes to the misconception that Migraine is no big deal and is easily dealt with – they should know better. The fact that someone is an Episodic sufferer rather than a Chronic one doesn’t make them better/more determined/harder working people; it just makes them luckier. I’m glad to say that I have only personally experienced this a handful of times IRL in the 25 years since my first migraine. The majority of people who have ever had a migraine attack or watched a loved one go through one are horrified and empathetic to the plight of people for whom attacks have become chronic or even daily.

With regards to the attacks themselves, the widely believed ‘it’s just a headache’ misconception is infuriating for all Migraine sufferers and is just plain wrong. A headache doesn’t make you cry, vomit, experience visual disturbances, vertigo, aphasia….I could go on! The idea that you can just ‘push through’ suggests that a Migraine can be ignored and defeated by sheer force of will – it can’t, believe me, I’ve tried. The World Health Organisation recognised years ago that severe Migraine attacks are no joke; WHO classified them as comparable to quadriplegia  or active psychosis in terms of how debilitating they are. 

Part of the problem is that people seem to struggle to recognise the severity and scale of impact of any condition that they can’t physically see just with the use of their eyeballs. Migraine sufferers naturally withdraw from the world when symptoms are at their worst. Add to this the fact that many sufferers, including myself, struggle to summon the energy to try to persuade others of the reality of our situation when we know from experience that all too often, we are met with incomprehension or downright disbelief. 

I’ve been diagnosed in recent months as having a Chiari Malformation. The vast majority of people in my life had never heard of it. So I show them diagrams and give them a brief explanation or a more detailed one if it’s someone who is particularly interested. No one so far has tried to tell me that ‘it’s not that bad’ or ‘my aunt had that and when she lost weight it cleared right up’ or ‘you just need to get out more’. Living with a condition that is relatively rare or unheard of by the public (and sometimes even by members of the medical profession) has it’s own set of difficulties. But I’ve been asking myself recently – would life actually be a little easier for people with Migraine if the world and her mother didn’t already think they know what Migraine is? 

Wishing you good luck and happy days,

Kindra x 

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10 thoughts on “Everybody’s An Expert on Migraine

  1. It is the nature of all disability for some to reduce the impact, where an opinion is not based on factual events.

    From cancer to pain arm chair experts have no direct experience, it is based on myth rumour or resurgence to improvement. Rather that be supportive some people try to be helpful.

    That pulsating throbbing aura of visual disturbance, the sickness or intolerance of any noise all factors, that fortunately have reduce toward my own working environment. I thank you for bringing this condition to the fore, where knowledge and understanding may help those with this debilitating condition.

    John.

    Liked by 1 person

    1. Thank you for stopping by and commenting John, I appreciate it. I agree, the tendency for people to belittle the impact of any disability is sadly an all to common response. It strikes me as bizarre that it still occurs with Migraine, considering that on any given day in the UK 90,000 Migraine attacks are stopping people from going to work or school. It can be very frustrating and hurtful for people who are struggling to get through each day. Fortunately there are also people out there who are willing to listen and offer support rather than judging, God bless them.

      Like

  2. While I don’t have daily migraines, since my heart surgery in June my “once a year or so” migraines have shifted to “up to four times a week” and it is miserable. It’s the whole day, no matter what. While I have rescue meds that can sometimes stop or at least minimize the pain, they do not stop the aura, the numbness of my hand/arm/face/mouth, the aphasia (that lasts for days) and the process that is happening. AND, they are not magic pills, they cause their own side effects like intense dizziness, exhaustion, increased heart rate, etc. I know that once upon a time an MRI showed a Chiari 1 malformation (which is common as a comorbidity in Ehler’s Danlos Syndrome, which I have) but I have to my knowledge never been symptomatic. There are those with Chiari who would scoff at that statement, but so far, it’s been true. Maybe that is related to this uptick, or hormones, or vagal nerve irritation from the heart surgery or, or, or. The only person who is an expert on your condition is you. Sometimes I say that to people who are trying to suggest some New Thing. “Thank you, but the only expert on my condition is me.”

    Liked by 1 person

    1. That is miserable, I’m sorry to hear about that awful increase. I agree, the abortive and rescue meds may work wonders for some but for some of us ‘taking the edge off’ or dealing with certain symptoms but not others is the best we can hope for and the side effects are no joke.
      Chiari can totally be asymptomatic (suddenly wondering if I’ve used the correct word for ‘not cause symptoms’ or just made up a word?) and you’re right, the increase in your Migraine attacks could be triggered by a number of things – it’s that much harder to pin down when you’re living with more than one chronic illness. According to my MRI, mine is doing a very good job of plugging up the hole at base of skull so next step is going into hospital to have a hole drilled in skull & monitor put inside to assess pressure/CSF flow. I’ve always felt that I had two entirely separate forms of Migraine- one that is more ‘classic’ and often responds to Triptan injection and the one at the base of my skull that is more problematic and has become steadily worse since the difficulties I had giving birth to my daughter…I believe the Chiari is contributing to the latter but not the former (I think that Migraine is inherited from my dad). So I completely agree, we are the ones with all the insider knowledge of our conditions, which are often complex and have elements that are unique to us. I’ve had people with Chiari tell me emphatically that all my head pain is Chiari related but I don’t agree. I definitely want the Chiari treated as far as possible as the base of skull pain is a nightmare these days but I’ll always be my father’s daughter re the one sided triptan responsive Migraine attacks, you know?

      Liked by 1 person

      1. Chiari is absolutely linked with pain in the back of head–something I’ve not had. I agree, there can be lots of reasons for headaches–which are among the most poorly understood phenomena anyway. I hope they can ease the Chiari related stuff for you quickly. Hugs.

        Liked by 1 person

  3. Pingback: What My Migraine Was Hiding – Chronic Pain Cockney – The Little Things

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