Is migraine a really bad headache?

A question I was asked a few months ago where I was given the space to voice what it is and what it isn’t, in a way that I was really seen and heard.

Flying on my own to Tenerife in summer, I was sat next to the loveliest of people. A mum and her adult son. Her other son was sat with his family a few rows down and they were all holidaying together in Tenerife for a week.

Let’s call him Martin. I can’t actually remember their names, I can only remember their warmth and fondly thinking what a lovely family they were and how happy it made me feel that they were holidaying together, making memories.

I was using some of the time on the plane to write a few social posts when Martin asked me what I was writing.

Photo by Etienne Girardet on Unsplash

I ended up sharing with him and his mum my plight of recent years, where I was health wise and what had led me to holidaying alone.

It felt refreshing to meet 2 strangers with such a genuine interest and felt like confirmation that my external experiences were now mirroring my internal condition in a way that I was pleased with.

“Is migraine a really bad headache?” he asked.

“If only” my reply

“I’m sorry that I don’t know much about it, I hope you don’t mind my asking”

“No need to apologise. Part of my work is to raise awareness and understanding of what it is and how what was once thought of as a headache is now known to be the world’s 2nd most disabling condition a person can live with and is also the most complex neurological disease known to man”

He and his mum held space for me to share what living with migraine disease was really like and how it had affected all areas of my life and mental and financial health as well as my physical health.

Both continued to ask questions with interest as I explained more about what I – and a billion other people – have been living with all this time.

It gave me the idea to write in response to this question and here’s me just getting round to it now.

Even though I’d lived with the disease for 20 years, there is SO much I didn’t know about it before chronic illness struck. And still so much neurologists don’t know and aren’t taught as part of their studies. It’s only where they independently go on to research and study migraine, which only seems to happen when there is a special interest in it, for example, if they suffer from it themselves or grew up with a parent who did.

At the point of chronic illness, by which time I was disabled by migraine and one of the 2 million thought to be living this way, I made the decision to research as much about it as a I could. I did this with the sole intent of continuing along the path of making changes. Even though there was a time where all I had was hope and this new-found belief that “I matter” and “my health matters”, I was adamant I could turn this disabled condition around and get my life back.

Photo by Aziz Acharki on Unsplash

I wonder often whether having insight before my health deteriorated to the extent it did, would it have significantly reduced – even prevented – me from becoming as ill as I did? I believe strongly that it would.

What I learnt about chronic migraine during chronic illness, where I was unable to work or generate any income, and spent so many of my days bedbound, transformed the way I view migraine. The research I was doing and have continued to do over the years has helped me put in place much-needed changes that turned around the chronic pain element side within 12 months.

Once I broke the chronic pain cycle, I became fascinated by what I was learning. It’s complexities are really very interesting to learn about.

Migraine is a disease and what has historically been called a migraine headache is now known to be an attack.

Migraine attacks are what people are experiencing as part of living with this disease.

Each attack is by no means limited to an attack inside your head or a pain attack, it is an attack of your entire body.

There can be up to 4 stages to an attack – prodrone, aura, pain and postdrone.

Prodrone – affects around 60% of sufferers

Prodrone stage occurs 1-3 days prior to attack and at the onset. This can be recognised by change in mood, behaviour, a feeling/knowing, depression, cognitive slowing and food cravings, severe thirst, bloating, constipation, diarrhoea.

My own prodrome phase would look like extreme tiredness, excessive yawning and I would binge eat food.

Aura

Although I didn’t have visual aura which presents itself in many different ways and is more commonly known for seeing clouds, spots, flashes, shapes like zig zaglines. Less common ones can include perception difficulties, apraxia, speech and language disfunction, de ja vu, parathesias and/or to some degree of motor disfunction.

I had a verbal aura where I would get words in sentence the wrong way round. When I look back, this was one of the most obvious signs of an impending attack that would happen a day or days before the pain kicked in.

Pain

Typically unilateral, throbbing and moderate to severe in intensity. 4 hours to 3 days in duration. Associated symptoms. 80% feel nausea at this stage, 50% are physically sick. Some migraineurs even faint.

Though I have experienced attacks to a moderate pain level, the majority over the last 24 years have been to a severe and agonising extent, some even excruciating. Sometimes the pain can be more on/off throughout the 4-72 hours and can come and go. This only happened for one period of time for a few months back in 2018 when I had a period of time with no pressure on myself to work and generate an income. As soon as I did, the pain levels shot right back up to full intensity for no less than 72 hours at a time. Every second of every minute of every hour was either to a severe or agonising pain level. It didn’t reduce in severity until this year (2022) when I was able to buy a small home for myself and live mortgage free.

I know I am far from the only migraine sufferer to feel pressure to generate an income to cover outgoings. I wonder at the correlation between financial pressure and it’s negative impact on our health.

Postdrone

Also known as the “migraine hangover” which comes after the pain has subsided. Tired, irritable, cognitively clouded are just a few symptoms of this stage. The final part of the attack can last anywhere between several hours and a few weeks.

Whilst not everyone suffers from all 4 stages of attack, many report each stage can be as debilitating as the pain element of the attack itself.

I don’t know that I always experienced all 4 stages of the attacks, but I certainly have the last several years.

To me, it does feel like a hangover – without the benefit of the good time of a night out with friends. And it lasts a lot longer. For days after I feel rough, done in and lethargic.

It can feel like I’ve been run over by a truck, had my stomach ripped out (even when I haven’t been physically sick) and like I’ve been beat up from the inside of my head and all around it. A feeling that used to last a few days and now only lasts one.

A fact I found surprising (although it would make sense to what I experience) is that we lose over 50% of our brain function with each attack. Although this is currently thought NOT to have longer lasting, permanent damage on our brains and health, this, incapacitates us in so many ways.

My own personal symptoms of migraine include pain to a severe and agonising, sometimes excruciating, level. Anxiety and depression, which although not known which comes first, is known to co-exist with migraine. Nausea, sickness and vomiting, often a few or several and even up to a dozen times in a day.

Brain fog, fatigue, excessive yawning, neck pain, jaw pain/tension, tinnitus, dizziness, frequent urination, sensitivity to smell, sensitivity to light, sensitivity to sound, difficulty concentrating/hearing, lack of mental clarity, sinus pain/pressure and, at one point (triggered when my dad died and lasting many months), constant (loud) sneezing and nose streaming.

Additionally, there are many other symptoms, and, in many cases, we may not associate these with the disease itself because of the stigma around it, how frequently it is dismissed and how little understanding there is.

In my case, it took me 20 years to get diagnosed and I made the difficult decision to stop taking preventative medication after taking 4 different types for the very reason that it wasn’t preventing anything. I experienced no reduction in frequency, severity, symptoms or duration at all.

In fact, what I did come to realise was that, in my case, what was actually happening was that my health was deteriorating further.

Photo by Thought Catalog on Unsplash

Although I was only ever diagnosed with classic migraine, I later came to find out there are many different types of attack of which I have several.

Menstrual migraine – occurs just before or at the start of menstrual bleed. Can also occur during/just after. Menstrual migraine is now known as the most difficult and challenging of all migraine types to overcome. It is the most medication resistant and the most disabling and debilitating of all migraine attacks.

Silent/Acephalgic migraine – where an aura and/or other migraine symptoms are experienced, but  the moderate to severe pain usually experienced doesn’t develop. Can be every bit as disabling and debilitating as other types of attacks, even though pain is absent.

Vestibular migraine/Migrainous Vertigo – mainly presents with dizziness alongside regular symptoms. Dizziness can be before, during, after or independent of migraine attack.

Abdominal migraine – the main symptom of abdominal migraine are recurrent episodes of moderate to severe stomach pain that lasts for between 1 and 72 hours. Other symptoms can include nausea, vomiting, loss of appetite and pale appearance.

Hemiplegic migraine – symptoms present similarly to a stroke. Typically includes sudden severe head pain on one side of the brain, weakness of half the body, ataxia and aphasia. Can last for hours, days or weeks.

Ophthalmic (ocular or retral) migraine – an eye condition that causes brief attacks of blindness or visual problems like flashing lights in 1 eye. These episodes can be frightening, but in most cases they’re harmless, short lived and the eye affected returns to normal afterwards.

Migraine with brainstem aura (MBA) –Associated with pain at the back of the head on both sides. Usually starting suddenly and can include dizziness, confusion, loss of balance, ringing ears, vomiting. Strongly linked to hormonal changes, mainly affecting women.

Intractable migraine/Status migrainosus – severe type of migraine, a relentless attack, where the pain extends beyond 72 hours. Often doesn’t respond to treatment, can require medical attention and sometimes a visit to the hospital. Notoriously difficult to relieve.

Opthalmoplegic migraine – rare neurological disorder, characterised by repeated headache attacks. Pain around the eye, including paralysis of muscles around it. This is a medical emergency because symptoms can also be caused by pressure on the nerves behind the eye or by an aneurism.

Thunderclap headache – lives up to its name and strikes suddenly like a clap of thunder. The pain of these severe headaches’ peaks within 60 seconds. When asked to grade pain on a scale out of 10, sufferers will mark the pain as 15.

Cluster headache – excruciating pain in one side of the head, often around one eye. Previously thought to be rare and not as longer lasting as a migraine attack - now known to the be the most painful experience a human can endure. It is common for the patient to bang their head off a wall in an attempt to alleviate extremely severe pain.

Post-concussion migraine/Post-concussion syndrome (PCS) – a set of symptoms that may continue for weeks, months and even years after a concussion. Symptoms include headaches, migraine attacks, concentration issues, light/noise sensitivity, irritability, depression and anxiety which may not occur immediately after injury and can occur days, weeks and months post injury.

Medication overuse/Rebound headache – caused by regular, long-term use of medication that’s taken to treat headaches and migraine attacks. Defined by the amount of acute medication taken per month by a patient. Each medication class has a specific threshold. 3 uses of triptans, ergot alkaloids, combination analgesics, or opioids on 10 or more days per month constitute medication overuse. Before I was made aware of this I was taking 6 or 7 sumitriptans per attack (as prescribed) at one point. This alone is known to be contributing to a significant percentage of disability in the world, taking it from 6th most disabling disease (2012) to the 2nd (2018) – Global Burden Disease report.

With this disease being so complex, there is so much more to be understood about migraine and though I have been researching this deeply misunderstood condition and have lived with it myself for 24 years, every year I am learning more and more about it. Research and understanding more about its complexities helps me make sense of what I’ve been living with, enduring and suffering all this time.

Taking what I’ve learnt and combining it with the belief that “I matter” / “my health matters” and using my own inner guidance system to help me clarify continued changes has seen further improvement to my health and healing.

After all this time, I can explain to others what’s been going on for me in in a way that others can understand, at least on some level, how much I’ve been affected and what I’ve been dealing with all this time.

So, in a very brief answer to the question, is migraine a really bad headache?

The more straight forward answer is that one can only wish that were the case.