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This migraine is here to stay

Alexandra
Nov 7, 202410 min read

Updated: Dec 21, 2024




Here's to a restful future


Welcome to this post and thank you so much for making your way here to read.


Let me jump right in. My decision to leave my much-loved job behind is based on my ever worsening condition by the name of hemiplegic migraine, which I have suffered from for roughly 44 years now. While I have loved my work massively, my body has said 'no more' to the extensive hours and responsibility.


Hemiplegic migraine is a little-known variation amongst a sea of migraine variants that befalls approximately 0.01% of the world population. Picking up where I left off during my way too short stint on The Nicky Campbell Show on Radio 5 Live earlier this year, I want to share some vital information about this awful and hugely misunderstood disease with those who want to learn about it.



What is hemiplegic migraine?

Hemiplegic migraine is a neurological condition, brought on by genetic defects and sometimes by head-/neck trauma, and then triggered throughout life by everyday events and influences. Women are more likely to suffer from migraines than men and it is common for women sufferers to experience a worsening of symptoms and frequency during perimenopause. And yes, I am in the perimenopause and yes, I have seen a sharp increase in migraine frequency over the last 5 years.


Symptoms of hemiplegic migraine are (in no particular order or prevalence):


Numbness/paralysis down one side of the body (head, face, tongue, throat, ear, arms, leg, hands, feet)

Weakness down one side of the body

Dropping face on one side

Echo-y hearing (like listening through a tin can)

Strong visual disturbances, from flickering rainbow half-circles to blind spots to tunnel vision to distortion to kaleidoscope vision to complete loss of vision (some unfortunate people loose sight for weeks)

Apashia: the inability to communicate verbally for a given amount of time or be limited in your communication, caused by disturbance in the area of the brain that controls language expression and comprehension

Alice in Wonderland Syndrome: a visual disturbance that lets items in view appear smaller/larger/out of proportion/detached from the body

Fever

Extreme repetitive urination

Diarrhoea

Heavy vomiting, often for hours on end

Confusion

Hallucinations

Fainting

Problems with coordination

Coma

Head pain, sometimes to the extent of having to administer morphine in hospital


Out of the above, I have not yet experienced: Coma, fainting,


Not all symptoms befall every hemiplegic sufferer. Not all symptoms appear during every episode. Not all symptoms last throughout the entire episode. But choose 4 from the above list 'just for fun' and see how you would feel if your child/partner/parent/loved one/colleague repeatedly had to deal with a collection of symptoms throughout their lifetime. There is no cure for migraine and while some people are lucky enough to leave migraines behind at some point in their lives for unknown reasons, many, many sufferers will have to deal with and manage their condition as best as they can continuously throughout their life.


Migraine generally has 3 stages. A prodrome, which is the run up to a migraine. In this phase, most sufferers often (but not always) will have an inkling what horrors are heading their way. They might feel seriously tired or deliriously ecstatic. They might be extremely pale with dark circles under their eyes. Their face might drop. They might be hyperactive. They might have sugar- or salt cravings. They might sleep badly, haunted by nightmares. Their neck might hurt.


Then hits the attack. Often hours of hell follow. A repetitive progression of symptoms runs its course, to be followed by another lot of symptoms. Because a migraineur’s body thrives best in static situations - a healthy and highly repetitive environment with often an extremely strict day-to-day routine - any disturbance to that homeostasis will potentially trigger yet another episode. This can be noise, changes in weather, catching a cold/Covid/any other illness, eating certain foods or not eating, having an argument, having too much fun, physical exertion, sadness, happiness, those ever-annoying hormones, travel, head impact, interrupted sleep or too much sleep. The list is endless and I always explain to people that everyday life is a trigger and therefore many migraineurs cannot simply exclude their triggers and live happily ever after. Think of an epileptic’s exposure to lights as they flash through trees when driving or on the TV and the resulting seizures and you are on your road to comprehension.


Often the only solution to an attack is complete surrender. Lie down and try to sleep. At least rest. Withdraw from any light/loud/busy environment. Take any abortive meds you have. I try to manage my attacks daily with a lifelong developed and researched mix of medications (amongst them epilepsy drugs), supplements, and exclusion of many, many activities and some food items. Then, during an attack, I will rely on bed rest, different meds, and certain natural remedies.


The phase after a migraine is the postdrome. It’s an exhausted, but grateful state in which a migraineur is simply glad it is over for now. In the seemingly endless hours of an attack it is easy to wonder whether you will ever come out of it again. Often people spend days in one attack, some poor souls even weeks, so it is not unusual to lose hope. The postdrome phase is an important phase of self-care. If I - for example - do not take extreme care (no activity/lots of sleep/no exposure to any triggers), I will with 100% certainty find myself in another attack the following day.



The longterm implications of hemiplegic migraine

It takes days to recover from a migraine, in my case about 2-3. But make no mistake: us migraineurs are not out of the woods even then. Because, of course, we are dealing with a chronic illness and dynamic disability. That means it is always within us, sometimes dorment, other times flaring up and showing its ugly face.

And this is something I would like people to remember and understand: After the migraine is before the next. If you are a longterm sufferer (44 years in my case), you are in it for the long run. It’s not a blip and the migraine demon will follow you around like a shark follows a trail of blood in water.

When trying to explain to non-sufferers the impact and nature of migraine (and possibly other similar chronic illnesses), I draw up this scenario:


Imagine you break your leg. You had fun, maybe skiing, and boom, one fall and you have to withdraw from normal life for the foreseeable future. You spend lots of time repairing your leg and letting your body rest and do its thing. Self-care, healthy food, painkillers, the lot. It’s an uncomfortable, long, and frustrating process and by the end of it you are pretty sick of all the limitations you face. But finally, here you are, the leg is healed. And then just like that someone comes along, breaks the leg in half again, violently and surprisingly, and says “now have fun growing it back again, but do your work while you are at it, and oh btw, smile, would you? See ya in a couple of weeks for a repeat”. That’s how longterm sufferers of chronic illnesses feel. It simply never ends.


My own reality

I suffered my first attack (that I personally remember) in first grade in school. I was 6 and one side of my body went numb in class. I limped to the front of the class to let the teacher know, but the words I said were not the words I was thinking. He could not understand me. That was enough to activate him to load me into the car and take me to the nearest doctor. Honestly, the 80s were a terrible time to suffer from migraines. The doctor very quickly diagnosed migraine and sent me and my mother home with the zero-comfort-providing words :"Don't worry, it won't kill you!" Research was so much in its infancy then and, if I am honest, still is nowadays. Progress by the professional field has been slow (understandably!) and this has led to a terrible underestimation of this illness by the general public, who will regularly ask how my 'headaches' are or if I am now finally better.


Well, let me tell you how they are:


A good migraine spell for me these days means 2-3 migraines a month. A bad one, 3-4 a week. A single attack will last anywhere between 1 hour and 8 hours+.

About four years ago I was still able to swim at the local pool twice a week while sticking to a strict health- and life routine that kept my migraines at a certain liveable level. I am a keen swimmer and a not too shabby one. In the last two years I have had to surrender to the fact that my body simply does not have the energy between that many attacks to be swimming or cycling or do much else. However, as is typical for dynamic disabilities, I do have good, strong days. These are the days when I will still grab my surfboard or go for a lovely walk.

With increasing age, migraine often becomes more and more triggered by physical activities and exercise and this has greatly affected me, alongside the hormonal implications of perimenopause. Both migraine and perimenopause bounce off each other and the intense fatigue brought on by increasing numbers of attacks and a changing body is life-altering and has become a trigger in itself.


My greatest asset in my hemiplegic migraine management is rest and sleep, no doubt. I try to get about ten hours sleep a night and tend to sleep at lunchtime, too. With this much needed rest time and work and daily chores, the time and energy available to do fun, carefree things is very limited.



Facts to help you understand

To understand the problems people with chronic illness and dynamic disability face regarding energy levels and management thereof, please read up on the spoon theory (https://www.thebraincharity.org.uk/whats-spoon-theory/). It is a simple, yet effective metaphor explaining the why and the how of chronic illness, resulting fatigue, and its management. It also clarifies that there is no such thing as 'pushing through' when it comes to chronic conditions.


And now, last but not least, I’d like to share a few important facts about migraine disorders, so you don’t walk away from this without any factual knowledge:


  • Globally approximately 40% of the world population is affected by so-called headache disorders

  • Headache disorders ranked third (after stroke and dementia) in accounting for overall neurological disease burden as measured by age-standardised disability-adjusted life years (DALYs) in 2019   

  • The economic burden migraine has on the UK economy alone is estimated to be between 6-10 billion GBP annually

  • Migraine is the biggest cause of years lived with disability amongst those aged 15 to 49

  • The long-term effort of coping with a chronic headache disorder may predispose the individual to other illnesses

  • Despite its extraordinary cost to society, migraine is the least publicly funded of all neurological diseases relative to its economic impact

  • Dogs can be trained to alert for migraine (smelling an attack up to 48 hours in advance) and can support migraineurs just like other service dogs do for sufferers of other illnesses


So please, before you think that you would do better than the sufferer, were you ever in the same situation (or thinking that you will simply never end up up in a similar situation), read up. Migraine is not the sufferer's fault. Migraine is not due to the sufferer's lack of effort in trying to improve their situation. Migraine is not curable. Migraine is not a headache, but a neurological disorder. Migraine separates the sufferer from many, most basic activities that others take for granted. Migraine leads to great loneliness and isolation.

Extensive information on all different variants of migraine can be found via the WHO (https://www.who.int/news-room/fact-sheets/detail/headache-disorders) and the wonderful Migraine Trust (https://migrainetrust.org) Healthline.com is also a website that I found to be comprehensive regarding all types of migraine. There are many medical publications from the likes of Oxford and Harvard, if you are looking for a deeper understanding. There is a young German model called Phia Quantius who gets her partner to document and publish her horrendous hemiplegic migraine attacks to create a wider awareness (https://www.instagram.com/p/CpnZzmrPQQ_/?hl=en). There are facebook groups where sufferers exchange experiences and knowledge and where the awfulness of the condition comes to light. And last, but not least do not forget the migraine sufferer in your life. They will have a wealth of knowledge that most doctors won’t be able to top.


As Michael J. Fox was once quoted:

“ The people living with the condition are the experts.”


What can you do? Be there if needed. Offer an ear, a shoulder, a lift home. Offer to take over chores. Take charge. Offer a safe bedroom and a warm blanket. Be prepared to leave the person in much needed isolation. Be ok with the person cancelling on you again and again. Offer understanding. Refrain from giving pseudo-medical advise that you read on social media or hear through others. Do not ask how a sufferer’s ‘headaches’ are or if they are drinking enough water - it is disrespectful and factually wrong.

Most importantly, please do accept another person’s very tough, heartbreaking, life-altering reality. Validate them. It will make their life better.


Thank you for reading



PS: It is a modern day habit to criticise and vilify mainstream medicine and its representatives. Let me say clearly that I do not agree with that tendency. I could not have gone on without my doctors and the bright people behind the research into new treatments and medicines. I am eternally grateful for the time and effort the medical and pharmaceutical professions put into finding solutions.

Without my wonderful neurologist (Dr. H, thank you! Fistbump!) I would have not been able to live the life I have been living over these last 20 years.




PPS: Since Wix does not allow footnotes (to show sources etc.), I have made a list of sources used below:





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