Migraines can be debilitatingly hellish to endure and yet modern science still doesn’t have a comprehensive understanding of them, nor can modern medicine successfully treat them all. Social understandings of migraine are often limited, so here’s a quick look at my experience and 7 things I’d like others to know about migraines.
[ June is the International Headache & Migraine Awareness Month ]
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My Migraine Experience
Prior to 2015, I’d had odd migraines here and there, but they didn’t interfere much with my life when there were only a couple a year. They were what I would call pretty classic in presentation; aura, light sensitivity, nausea and then I’d vomit, which would call an end to the episode within about two hours. I never had it on waking up, I didn’t get eye pain, I didn’t take prescription meds and it didn’t affect my work or social life.
Then it all changed in 2015. This is thanks to a nightmare surgery and severe autoimmune response to a medical implant. The experience has been so different that I wasn’t convinced they were migraines at all. I’d entered a hell-on-a-loop cycle.
These migraines have been chronic in regularity, sometimes happening twice a day to lead to an average 28 episodes a month. I’d often get migraines on waking, alongside autoimmune inflammation in my face. I dreaded waking up because it was a level of horror that I can’t adequately describe. The migraine experience for me the last several years has predominantly featured pain in one eye that can be unbelievably intense and overwhelming. Then nausea hits me square in the face. Without medication, I throw up but continue to feel awful because the migraine doesn’t disappear. It’ll continue for hours, days. All I can do is keep myself from jumping out of a window.
It makes me feel utterly awful, the pain too sickening to focus, and it renders me non-functional. Only Sumatriptan can make it stop. Migraine postdrome also occurs more often than not, leaving me feeling washed out and shaky.
I’m very fortunate because I’ve found Sumatriptan has worked well for the most part, but I don’t get enough medication to cover every attack, despite an extended prescription to allow for more tablets each month than is usually given.
I’ve also had to fight to keep my medication. A pharmacist at my GP practice has tried to take me off it more than once, despite her not knowing my situation, using incorrect reasoning of medication-induced migraine that did not apply in my case, and not paying attention to what my neurologist had written in my notes. It’s part and parcel of NHS cost-cutting and political moves to reduce certain prescription statistics like those given for Triptans and opioids.
Seeking help hasn’t been easy. I’ve seen two neurology specialists. The first neurologist I saw made the appointment into a competition, telling me he used to have worse migraines than I and that his magically disappeared when he turned 35. He told me to wait until I turn 35 and mine will probably end, too. I kid you not. That was his diagnosis and treatment right there, and I vowed to never see him again.
The second neurologist, who I current see, is far more considerate of what I have to say and appreciative of what migraines are and why I’ve been struggling. I’ll be eternally grateful to him for at least caring and trying to help. After testing out other prophylaxis treatments with no success, he put me on Ajovy injections. This may soon need to be changed as I don’t think I’ve had a high enough level of improvement to stay on them with NHS funding. In addition I take Naproxen, which I requested from my GP for the widespread autoimmune inflammation.
The two medications together have helped, because even the odd migraine less each month is a miracle for me. But yes, I still do get a lot of these atypical migraines each month. For the past 5 months, the episodes have been closer to 20 than 28 per month. It’s still far too much, but I’m grateful for small mercies.
7 Things I’d Like You To Know About Migraines
1. Migraine Can Be Chronic
For some, a migraine is an occasional experience, once every so often. That’s referred to as Episodic Migraine. For others, it becomes chronic, experienced with greater regularity and usually over an extended period of time. It’s estimated that around 148 million people worldwide suffer from chronic migraine.
Chronic migraines are usually deemed as such if they’re experienced more than 15 days each month. The impact this can have on a sufferer’s life is potentially huge, affecting their physical health, mental health, work and social life. It can become a never-ending loop of migraines, both unpredictable and yet so routine it becomes devastating.
2. Aura Is Not A Requirement For Migraine
It’s often thought that experiencing visual aura or other visual disturbance is a necessity for it to be a migraine, which isn’t true. You may or may not get aura, blurred vision, light sensitivity etc. It’s thought that it could be as little as 10% of migraineurs that actually experience aura, and only 15% that vomit during an episode.
Related Reading : 15 Surprising Facts About Migraines & Their Prevalence
3. Migraine Comes In Different Forms & They Can Change Over A Lifetime
There are several different types of migraine. For instance :
Vestibular migraine / Migraine with and without aura / Migraine with brainstem aura / Hemiplegic migraine / Menstrual migraine / Abdominal migraine / Chronic migraine / Retinal migraine.
A person may experience one type of migraine during their lifetime, or they may experience different forms at different times. Or they may not fit into one category neatly at all. And even if they did, it may change over the course of a lifetime. The why and how this can happen isn’t often known.
The causes, symptoms, general experience and treatment outcomes can vary drastically between each person, even if they’re diagnosed with the same type of migraine.
4. Migraine Triggers Don’t Always Apply
A lot of internet articles and medical professionals talk about migraine triggers. It’s suggested migraineurs look at what may precede the migraine, what might cause an attack, what might set it off or make it worse. It could be anything and everything, from food types, pollen and stress, to certain smells, menstruation and temperature.
While it’s true for some with migraines that there are triggers to start or make worse any particular attack, that’s not always the case. Plenty of people with migraine find there to be no triggers and no explanations as to why it happens when it does, perhaps in particular when it comes to chronic migraine. That makes it all the more challenging because there’s nothing we can do to prevent attacks or lessen their impact on our lives by changing or avoiding particular triggers.
5. Migraine Can Be Incredibly Debilitating
A migraine has the potential to render the sufferer non-functional both mentally and physically. It can be hell for the sufferer, a period of waiting for it to end and doing all you can simply to survive it.
It’s far more than a headache, and getting the two confused can be very insulting to those that live with chronic migraines. There’s also more to the experience, from visual disturbance and light sensitivity, to facial pain, neck pain, poor concentration, nausea and vomiting.
When a bad migraine hits, it can mean rolling around in bed, curtains closed, wearing an icy cold eye mask, whimpering, begging for it to go away, throwing up, and just repeating that for an hour, two hours, six hours, or however long it takes until it either stops naturally, you fall asleep, or you take medication. If I suffered with a migraine for a few hours and then somehow fell asleep, I’d wake up still with the migraine unless I take Sumatriptan. You can feel so rough and unwell that you can’t focus, talk, think straight or even move. It can make you feel not just frustrated but deeply hopeless.
As it’s an invisible illness and many live with migraines almost in secret, not showing the world what they’re going through when it happens. It feels like others don’t “get it” or don’t believe us when we say how bad it is. But I can assure you that it’s bad, so bad in fact that chronic migraines alone can rob some people of a work life, social life, sex life and family life.
They’re not just debilitating at the time of the experience. They can interfere and interrupt other aspects of your life because they’re unpredictable and don’t keep to a socially appropriate schedule. Unfortunately, people can’t just have migraines outside of work hours or when there isn’t a family function.
6. Medications Can Cause Symptoms Of Their Own
Migraine medications come in two types : Prophylaxis medications to help prevent migraines from occurring, and treatments that are taken when a migraine episode has started to try to stop it.
There’s also the issue of medications potentially causing more migraines, referred to a medication overuse headache. I think some patients will know this is not the case for them if they were already experiencing many migraines prior to seeking medical treatment.
Many of the migraine prophylaxis treatments available were previously used for other conditions, like epilepsy. Somewhere along the line, scientists and researchers found they could be helpful in migraine prevention, too. Unfortunately, many of these come with a long list of side-effects and not everyone will find a prophylaxis therapy that’s both effective and actually tolerable.
I’d tried a few myself before being put on Ajovy and found each of them to be hideous and unbearably awful in terms of side-effects, and none of them even touched my migraines. Patients can go through a lot of trial and error with a lot of medications before hopefully finding something that can help, and it’s a case of seeing whether the benefit outweighs the cost of side-effects.
Some people won’t find a preventative that works for them, in which case they have to hope to find a treatment that can minimise or stop a migraine once it has started.
Such treatments to be taken once a migraine has started are somewhat limited and most of these are triptans, like the Sumatriptan I take. As with all medications, there can be side-effects and what works for one person may not work for the next. The goal is getting something that helps, that’s also tolerable enough to take without causing too many problems of its own.
Related Reading : 7 Migraine & Headache Helpers
7. The Migraine Party Can Continue With Postdrome
Once a migraine has gone, either naturally or with medication, some migraineurs experience another slice of joy for some time after: Migraine postdrome. Think of it as a dessert to the main meal of the migraine.
It’ll be different for each person, but postdrome typically makes you feel generally rubbish for some time after. I experience postdrome more often than not after migraines, and the time it lasts can vary between half an hour to several hours. I’ve had a migraine end at 1pm after medication and been so poorly and washed out until 6pm, and it’s only then that I’ve come around and feel more aware of where I am.
Postdrome can leave you feeling exhausted, unable to concentrate and focus, weak, shaky, nauseous and completely drained of life for some time after the crux of a migraine has ended.
If you don’t suffer with migraines, do you have any questions about them? If you do experience migraines, what would you want others to know them?
Note : If you start experiencing sudden headaches or migraines, please speak to your doctor. Migraines should be investigated to ensure there’s no other underlying cause. If you have any concerns about your migraines or treatment, seek professional medical guidance.