It was my birthday, my 28th birthday to be exact. I wore a bright red dress because once I commit to an unnecessary idea (going somewhere fancy for my birthday so I can dress up) I go all the way. If you looked at me, you wouldn’t have known that anything was wrong. I walked briskly, impatiently and slightly in agony through the CBD towards the French restaurant hidden in a laneway. I would be the first to arrive in a small, intimate booth and I would wait there with the face of Monica Bellucci in Malena as she whips out a cigarette and all the men rush to light it, but instead of a cigarette, I’m about to pop the painkillers and they’re passing me water.

Thank you for helping me in my time of need

As I wait for my six guests, I only have one thought: how can I get through the next three hours without vomiting and passing out?

Hi my name is Sheree and I’ve had migraines for a decade and chronic migraines for two years. I survived my own birthday by falling into a fugue state and living through an alternate reality where I was actually a French countess or something. I gritted my teeth, I employed the occasional head in hand manoeuvre, coupled with one eye closed during the main course, and periodically holding a cold martini to my head. I can do this, I can get through this beautiful dinner. I won’t let these friends down.

And before I knew it, it was over. Relief flooded through me. I’d be home soon. OR WOULD I? *dramatic music*

People who couldn’t make the dinner, desperately wanted to meet us for drinks. My heart fell to my gut which was now the epicentre for all things nausea related. I knew that I couldn’t go but also that I had to go and felt myself being pulled into two opposite directions like a piece of kneaded play-doh that quickly rips in two and the sentient piece continues in the direction towards the CBD bar full of corporate suits.

I followed everyone with great difficulty, eyes closed, feeling my way down grimy George Street. I immediately proceeded to hide in the corner, clutching my head. One of my friends, who hadn’t been at the dinner and didn’t know I had a migraine, walked past and offered to buy me a birthday drink. I openly flinched at the idea, regretting previous martinis back when I believed I had no choice but to drink so I could order another cold one for my head. I said no a little too loudly. He laughed unperturbed and jived off towards the bar. Everyone was having a good time, except for crouching tiger, hidden migraine standing in the corner like a loser.

My best friend Sophie, like a good best friend is wont to do, pulled me aside to ask if I was okay. I said I wasn’t and I just wasn’t sure what else to do. The migraines were increasingly beginning on Fridays and would last for an entire weekend, meaning I had already become an anti-social shut-in and just coming out at all was a small miracle (the “weekend migraine” is a thing). Most of all, I felt sad that I would look back on what should have been a delightful memory and instead cringe endlessly (it’s true I’m doing that right now).

And then Sophie said some words that changed how I looked at my condition.

“You have a chronic health problem, you’re allowed to take time out to figure out how to deal with it in a way that works best for you.”

It was the first time I’d heard someone call it a chronic health problem, even though it’s something that I’ve suffered with for a decade. When you hear the words “chronic health problem” you think of people who are forced to live with serious, life-threatening illnesses, bedridden or chained to their homes. You think of something constant and enduring. But actually chronic health pain can come in all forms, and many people can be highly functional in the face of great pain. It is a constant hum you stop hearing, but something that can so casually run an endurance marathon across your life.

It’s true that when my migraines went from being occasional to frequent, they changed who I was fundamentally. I became reclusive and struggled with basic attempts at socialising. I lost my confidence. I struggled with basic stressful situations at work and constantly dealt with the dilemma of taking a day off when I’m the sole person who runs The Vocal. My appearance changed drastically thanks to dangerous drugs that didn’t work and which when mentioned to experts, openly flinched at the idea of taking them for migraine prevention. Most of all I developed a debilitating and constant anxiety that an attack was always imminent.

But perhaps the worst part of the ordeal was discovering the stigma associated with migraine, particularly for women. I hadn’t noticed it as much before because I was less vocal about my condition. But speaking up led to hearing other similar stories and realising I was so far from being alone in this. It also led to the most frustrating thing you can experience with this condition — everyone migraine-splaining your condition back to you with a series of “solutions” because they had a headache “that one time in their life” and found relief with X strategy that they assume you don’t know about and are willingly avoiding for some reason.

Research into why particular people suffer particular strands of migraine is limited. Although they might know how it works, they don’t necessarily know why and how to deal with them long term. As a result, a lot of treatments are trial and error. You’re usually given ways to deal with the pain and the end result, rather than prevent them for the long term. Even less is known when it comes to migraine affecting women, even though women are more prone to suffering from migraine than men.

Generally, nobody wants to wade into murky, unanswerable areas, so they stick with tried and tested methods and what they do know, which is often limited depending on their profession and field of interest.

The problem and main barrier is that few people and few doctors take the condition seriously. And why would they? Unless you’ve suffered from migraines, it’s probably hard to imagine how bad they can get. “Just a headache” is something GPs commonly say before prescribing you some, erm, Panadol. They may as well just hand out candy because I love candy and that would at least brighten my mood.

Now, full disclaimer: a lot of this is based on my personal observations as someone who has experienced this ordeal for a long time and from what I’ve learnt along the way. But the more research I did myself, the more I discovered there was a whole wealth of knowledge on this issue I had never read before, because I didn’t know to look for it.

This is because I had never heard about headache specialists until this year.

If headache doctors — board-certified headache specialists — is a new concept to you, well there’s a good reason for it. Most migraine sufferers have only ever seen a GP or a neurologist or maybe a gynaecologist. The huge issue here is that many doctors have studied migraine so little and this is how they can further perpetuate the migraine stigma and trivialise the disease. And headache doctors actually experience the same migraine stigma that patients experience.

This is the stigma checklist for those playing at home:

Have you ever felt misunderstood because of your migraines? Have you ever been told to “take an Advil” to get through the work day? Or made to feel guilty for cancelling plans because of illness?

The physicians who dedicate their careers to migraine and headache disorders spend years studying migraine disease and work exclusively with headache patients. As the article explains,

“Neurologists, doctors who specialise in the brain and nervous system, are often not well-versed in migraine, either. On average, doctors only receive four hours of instruction about all headache disorders in undergraduate education. That is not nearly enough.”

“It is no wonder so many patients leave doctors’ offices feeling confused or bogged down by misinformation. Managing migraine disease is tricky. It involves looking at multiple areas of a person’s life, including genetic history, lifestyle choices, diet and sleep habits, and exercise patterns. Without training and education, the patient-physician partnership cannot do what is needed to manage migraines.

This lack of education can also add to some of the migraine stigma that both patients and headache doctors feel at the hands of other professionals. Some doctors see migraine as something of a mystery, making them less-inclined (and less able) to tackle the problem. That’s just one reason being an advocate for your own migraine care is so essential.

Headache specialists understand that migraine disease is a genetic, neurological condition affecting all areas of a person’s life. Other doctors, however, may not. Dr. Dodick explains the situation this way:

“Healthcare providers have gone into the profession to help people, and they want to help people. But if you are not trained in the disorder that the patients come in to see you for, you feel unequipped to manage that person. Plus add to that the historical stigma attached to migraine and those who suffer, and it’s a double whammy.”

So with all this in mind, how do you go about finding a treatment that works for you? In the second part I explain how I turned things around and eventually got the migraines under control.

Why does it take so long to heal chronic migraines? For a while you put up with it because you don’t really think you have options. Or you have too many options and it’s overwhelming. Most of the time you’ve tried “everything” and by everything I mean most conventional medicine that people assume includes everything. Still, nothing works.

Another common part for chronic migraine sufferers is the one least talked about: mental health and the struggle with depression and anxiety. The relentlessness of constantly feeling sick in an invisible way. Being unable to do most activities and how it gradually wears you down. How you become convinced that nothing could hurt more than this and so death doesn’t seem so bad in comparison. Headache specialists can tell you stories of patients breaking down during a session because no one has ever really listened to them before or believed their story and now they finally have hope that things might get better.

How to get closer to relief and healing

At the worst point I was having migraines every day. I was also battling withdrawal symptoms after coming off amitriptyline for migraine prevention. The combination of battling both was one of the worst things I’ve ever experienced. I knew something had to drastically change. So I took to the internet. I did my research. I spent a lot of time on r/migraine. I subscribed to everything. I spoke to people who had actually experienced chronic migraines and ignored everyone who still thought a migraine was a bit of a headache and the people who asked you if you’ve drunk enough water, or have you tried being less stressed?

I eventually found migraine apps, websites and communities who tend to focus on “pals” and “buddies” because if there’s anything us migraine sufferers need, it’s more friends (true). An example of one such community is Migraine Pal which was founded by a charming chap called Carl. I am extremely grateful for the migraine themed friendship that Carl brought to my life during some of my worst moments. The community consists of “informed migraine patients looking for medically referenced facts, better results and support from like minded people”. It’s how I discovered that headache specialists are a thing. They do great, useful lists like 14 things you should never say to someone with migraine or this list of over 100 effective natural treatment options (let’s hear it for the King of them all: the humble ice pack).

my ice pack headband invention: patent pending

Another one you should switch your attention to immediately is Migraine Buddy. Download the Migraine Buddy app now. Go on, I’ll wait. I love this app. It allows me to keep track of the duration of an attack, the triggers, treatments, medication, symptoms, weather changes and sleeping patterns. It also allows me to post updates to social media informing my friends of my suffering with a handy screen cap tracking the hours as they climb up to 53 hour marathon sessions! A win win. Once you’ve clocked in a few episodes, you can start to see the patterns in the reports section. You can also send it to your doctor. Just don’t forget to update it when the migraine disappears, like that time I had a migraine for 6 weeks.

hello darkness my old friend

Now you have some solid evidence to back up your claims and give you more control. The next step is to find a GP that takes you seriously. My advice would be to ask in local communities, message boards or among friends for recommendations. r/migraine on Reddit is pretty great but not locally based. Otherwise you’re taking a huge risk in randomly turning up to a clinic and being assigned a doctor who will rush through a diagnosis, give you harmful medication or send you down the wrong path. Or worst of all, not take you seriously and make you feel like shit. We’ve all been there.

I eventually (and I can’t stress the ‘eventually’ here enough) found a great GP. She listened to everything I said, she addressed my concerns and needs. Even though she respected the treatment my neurologist had put me on, she inadvertently led me down an alternative and holistic approach by nudging me in a slightly different direction should I so choose to look elsewhere or find the medication not working. She put me on a chronic health plan with Medicare, a thing I didn’t know existed until she mentioned it. Basically if a GP refers you to a number of relevant specialists in psychology, physiotherapy, dieticians, etc. they can add it to the plan and you get a capped number of subsidised sessions through Medicare. Not only did she do this, she specifically recommended a physiotherapist in Leichhardt who specialises in headaches, and who she was sure could help me. Even though they had a physiotherapist in that specific clinic, she said it would be better to go to this specialist and almost insisted on it. I was so unaccustomed to this level of care and attention from a GP, I almost didn’t take her advice. I was extremely glad I eventually did.

Once it was clear that the amitriptyline was not only not working but making the migraines worse (and saw me gain 15 kilos in a few months, have severe nightmares, dry eyes and dry mouth) my neurologist told me to stop taking the medication and referred me to another neurologist who specialises in botox for migraine, since I was now in that category for treatment. I made an appointment and was told it would cost up to $500 for a first consult and then if I’m not eligible for the rebate, it would cost even more per treatment. Some people can justify this since botox is meant to be extremely effective in treating migraines. The problem for me wasn’t the cost. I’d spent so much money already over the years. The problem was that if it didn’t work, I would have felt like I’d exhausted all options and almost couldn’t deal with the emotional as well as physical ramifications. It was also only a short term solution in that it treats them, not prevents them. So before trying botox, I decided to give my last two alternative treatment options a red hot go.

Discovering Kate Mcleod the physiotherapist from The Physio Lab was a life changing turning point and I cannot recommend her enough. She asked all the right questions and was extremely thorough in listening to my back story. She knew about all the treatments I’d tried and why they hadn’t worked. She asked if I could hold off on the botox appointment to see if she could treat me first, because she was confident she could. She determined my body type — hypermobile — which put me at risk of migraines and headaches. She asked when the migraines got worse. Then she later asked when I started heavily using an iPhone and working long hours in an office and made the connection that modern life is a huge factor in exacerbating the issue, placing a huge strain on the body and specifically the neck. She predicts this will get worse for the next generation. She noticed even from the way I was sitting that I was susceptible to this. She even explained why having this body type makes you more susceptible to not only the adverse side effects I’d experienced on amitriptyline, but also that it makes you more prone to depression and anxiety. Light bulbs were going off all over the place.

Now here’s where it gets interesting. She explained how research has shown that the upper neck is connected to the brain, specifically to the sensitised brainstem, the cause of migraines. But many doctors and neurologists don’t recognise this connection. The medical world has long held the view that migraine is a vascular headache, related to the vasodilation of blood vessels within the head. But new research has shown that those suffering from migraines do not suffer from expansion of blood vessels in the brain, but rather from a sensitised brainstem.

This idea has been pioneered by Dean Watson. Dean Watson is the founder of the Watson Headache Approach, a form of treatment he’s taken around the world. Dean has been treating headache and migraine exclusively since 1991, amassing an extraordinary amount of experience with over 8000 headache and migraine sufferers. His approach is medication and radiation free, non invasive, and comprises a series of non manipulative (no ‘cracking’) techniques applied in a systematic way.

Dean Watson trained Kate, who referred me to Dean after a few sessions to get a comprehensive consultation and make sure she was on the right path. My session with Dean was one of the most illuminating healthcare sessions I’ve ever experienced. Prior to the session he called me to discuss my case and give me a heads up about what to expect in the appointment, how long it would take and what he would discuss with me. Once at the clinic, his wonderful wife Jane Watson made sure I was comfortable while I waited. Did I want something to drink? Did I know where the bathroom was? After the session she spent time talking to me about my experience and her own experience. I didn’t feel so alone and I couldn’t help but marvel at how different this felt to the usual experience of crowded waiting rooms and indifference.

During the one and a half hour session with Dean Watson, he patiently explained concepts, spent time asking me questions to assess my symptoms and condition, as well as lifestyle factors and treatments. He then showed me examples of the treatment, which included recreating the pain and then making it go away and demonstrating what had just happened via diagrams and videos. (“Now, let’s go to the movies!” Dean declared after the treatment, and I was fully prepared to grab my coat and actually go to the movies but he just meant to come and watch the video in slow motion that shows a 3D video of the brain and what he just did, which made a lot more sense now that I think about it).

The most groundbreaking thing about this has to be the revelation that for menstrual migraine sufferers, hormones aren’t actually to blame. This is a common misunderstanding that Dean clears up in this post where he explains that clinical observations show women experiencing headache not just around day 1 of their cycle (decreased oestrogen) but also at mid cycle/ovulation when there is increased estrogen. He also notes that hormones would affect both sides of the head equally, but menstrual migraine is often just on one side. Research has confirmed “that the hormonal profiles of women experiencing menstrual migraine are no different to those of women without menstrual migraine” so “how can it be hormones then?” Dean Watson rightly asks. This checks out in my case insofar as I’ve never been shown to have any problems with my hormones.

“This has prompted one of the world’s leading authorities in this area, Professor Elizabeth Loder, to suggest that there has to be another factor in the menstrual migraine condition; ‘… an abnormal response in the central nervous system to normal fluctuations of hormones.’ i.e. the issue lies within the central nervous system.”

This is where the sensitised brainstem comes into it again. Since hormonal changes trigger activity which is normal for most women — the subtle expansion and contraction of blood vessels with the head, this normal activity is exaggerated when it passes through a sensitised brainstem on the way to the cortex. The cortex, who is not having a bar of it now that it has received the exaggerated activity, interprets this as a harmful attack and it wants to warn the body of this, so it creates head pain (shakes fist at this huge misunderstanding on the part of the cortex). So in other words, as women we are supposed to experience a bit of pain from time to time, but it’s only when the brainstem is sensitised that this pain graduates into migraine territory.

I should point out that the Dean Watson treatment is not for everyone with migraines. There are specific things to look out for. The main thing is whether the migraine happens on one side of the head (it can be either side, interchangeably but most people experience it on the same side). The reason this type of sufferer might be struggling more than usual, is because it doesn’t matter if they change their lifestyle, their diet, their hormones, or go on the pill. The migraine triggers are still there and the root cause (the sensitised brainstem) hasn’t been addressed. This type of sufferer might say they’ve tried everything and nothing has worked. But they might find that prescription medication like triptans (ie. imigran) do work for them. That’s because imigran does desensitise the brainstem but only temporarily.

Still not sure of this theory? So my physio Kate gave it a whirl and she suspected the C3 cervical spine on right side to be the perpetrator (since the headaches mostly happened on the right hand side of my forehead). She pressed on it and it was the most painful thing I’ve ever experienced. She pressed the other side. Not so bad, but not great either. She said she applied the same amount of pressure to both. The one on the right one was stiff and out of place. She pressed on it for a while and eventually was able to recreate the migraine on my lower right hand side of the head, shooting up to the ear. She was also able to recreate the dizziness and nausea. I was horrified. And then she made it go away by relieving the pressure. This is a sign that the treatment can work.

So did it work?

I broke my own rule of only doing one treatment at a time to know what really did work, simply because I was at breaking point and couldn’t handle another few months of the excruciating agony of migraines. So I started the physiotherapy at the same time as I started acupuncture and taking traditional Chinese herbs. I was told with the Dean Watson approach, you only need up to five sessions to address the core problem and start to see results. I was told with Traditional Chinese Medicine I’d need two months before I see results.

I saw Kate sporadically at first and then more consistently and I was seeing results. But Kate did warn that I could still be susceptible to the problem if I didn’t pay attention to my working environment, making sure my desk was set up correctly (hot desking be damned!) and being aware of how my neck is when using the phone or a laptop, or even talking to someone from the side for too long, or if I did a strenuous yoga class or pilates without a trained physio present. She said some of the triggers could still set me off if enough of them happen at the same time and so there could be a few factors against me. I did have about 5 sessions with Kate and then one session with Dean, who recommended I continue seeing Kate as the problem was still there. But I didn’t go back to Kate for a while because…

The migraines went away. And the only thing I was doing in that time frame between seeing Dean and them disappearing was the acupuncture and the herbs. I began to pay more attention to this treatment for another reason. I started to notice my other symptoms that I’ve struggled with for a long time were also being treated. No more severe PMS for up to a week (I had an endometriosis diagnosis at 23). No more nausea, general headaches and insomnia.

So what gives there?

Let’s talk about Traditional Chinese Medicine and acupuncture

If you are a chronic migraine sufferer, you would have inevitably had someone throw the ol’ “have you tried acupuncture” at you line since, everyone is an expert remember? Firstly I would like to say, like a lot of recommended advice, there’s never just one thing that can help you. Doing acupuncture itself, without understanding the full picture of what’s going on with you, might not make enough of a difference to keep you going back, and something like acupuncture takes time to really work (like all things, but we do get impatient here in the migraine world). In some cases, it might even make it worse before it gets better. And that would deter you from giving it a complete go. Which would be a shame. If you’re going to do it, do it properly.

The TCM view of migraines and headaches is that the causes and symptoms of headaches can be so different, and so headaches should be diagnosed and treated according to individual conditions. They look at how the head is closely connected with other parts of the body, and what external or internal factors impede the flow of meridians, disturb nutrient supply to the head and block the head orifices. This understanding does acknowledge that there are many triggers or causes for headache which affect the frequency and severity from individual to individual.

“Chinese medicine recognises more than nine different imbalances which can cause migraine symptoms, whether it be a liver or gallbladder channel disharmony, a deficiency of Qi or blood, an upsurge of Yang to the channels in the head, or a combination. Because of this, acupuncture and herbal medicine treatment provides specific and targeted relief of active symptoms, and reconfigures the body to deal with the imbalance at its core, reducing the frequency and severity of migraines long term. Most treatments for migraine in the Chinese medicine clinic involve acupuncture and herbal medicine to ease migraine symptoms and correct the underlying imbalance. Each case is different, but in my clinical experience, an initial course of six to eight weekly sessions with thorough re-assessment at each visit is a reasonable starting point. Modern studies of the mechanism of acupuncture to address migraine have found needling stimulates morphine-like molecules which block pain receptors. Traditional understanding is that as well as pain relief, acupuncture and herbal medicine work deeper to regulate the hormonal and nervous systems, restore free flow of Qi and allow the body to self-regulate and heal.”

My TCM doctor Dr Chen is a former oncologist (he still specialises in helping cancer patients). Each session he checks my pulse, looks at my tongue and asks me what symptoms I’m experiencing. He’ll ask if the symptoms are better or worse than usual or the same. Some sessions he might go into more details. Since he is a doctor trained in both systems, he might look at blood test results, ultrasounds or MRIs and sometimes find details that GPs or neurologists have missed. This is followed by an acupuncture session that varies each week depending on the symptoms and what he’ll be treating that week. So one week he’ll focus on the nausea and insomnia. Another week he focuses on my neck, which might include applying heat via a machine trained on the neck area. Once all the needles are in, you lie there in the dark for half an hour (usually longer — which is better but sometimes people are alarmed by this and I have heard one woman call out “Dr Chen, did you forget about me” I felt sorry for her, I thought she must have been new, because once you realise that you can be in there for up to an hour, YOU LEARN HOW TO STRATEGICALLY FALL ASLEEP, IT’S GREAT).

Sometimes the session involves keeping the needles in around my temples, in my ear, in my wrists or my feet for six days following the procedure. He then leaves me with a range of powerful herbs to take every day, he says they are flowers and one is called “peony”. You take 5 different types of 11 herbs three times a day, so that’s 165 herbs a day, every day. He changes the amounts each week depending on what issue needs to be addressed.

The Matrix did not account for there being this many pills ever.

The differences I noticed after starting to take the herbs include actually noticing the pain in my neck (sometimes instead of in my head, sometimes in addition to it) which I never noticed before (and which might be why I never thought to see anyone about my neck). I started sleeping better. I noticed I had better digestion and was starting to lose the weight I’d gained on preventative drugs and the pill. I no longer had intense period pain or lower back pain before menstruation (still during but not as badly as before). Even post pill acne started to disappear! And eventually, the migraines had downgraded to general headaches. And if I watched my posture and did my physio-instructed retraction exercises, they disappeared altogether.

The last thing to go was, frustratingly, the nausea. Dean Watson once told me that nausea is the migraine of the gut and it’s possible to not have the head pain but to only feel it in the gut instead (this is why children complain of stomach issues a lot). So it was no surprise that I was only experiencing the nausea for a few weeks after the migraines had lessened. But I explained this to Dr Chen and he focussed on the nausea for weeks until it disappeared.

So now I can’t remember the last time I had a 3-day debilitating migraine bender. Or even a full 24 hours of one. Now I might get a bit of a headache, but it goes away fairly quickly. So something is changing. If I had to guess, I would say it was a combination of the Dean Watson approach with the Traditional Chinese Medicine and acupuncture sessions.

Taking control of your migraines

I could write 4000 words on the experience I had prior to this in trying to get my migraines cured. In fact, I did write them. And then I cut them out because they reminded me of an extremely traumatic time I didn’t want to revisit. But they serve as a powerful reminder that the health care system we put so much trust in has a lot to answer for when it comes to migraine treatment. What I will say is that I wish I had looked for alternative options sooner, rather than blindly trusting neurologists and GPs. Or that when I did try those options, that I had spent as much time trying them as the conventional and accepted approaches that were clearly not working and were only making me feel sicker in new ways.

As much as I wish I had done more research sooner, I also realise that I didn’t have the energy or the time to dedicate to my health, to seek out as many opinions and as much information as possible. It wasn’t until it became a pressing and debilitating problem that I sat up and said enough.

What I have learnt is that you have to take control of your condition and trust your instincts. The longer you have suffered without answers, the harder it can be, and it will still involve time, patience and money, just to rule out options and find the thing that works for you. And even then there are no guarantees. But seeking out people who get it can be life rupturing. These were just two new ways I explored and it took less than 3 months to see a difference. There are actually more I never even tried but picked up along the way. Like the Cefaly headband (which makes you feel like Wonder Woman I’m told), daith piercing (permanent hipster acupuncture?!) and of course, botox, are also meant to be highly effective. But like so many other treatments, they mostly treat the symptoms in the short term.

There are more options out there than you are led to believe. But you’re not alone in your suffering and there are things you can do to get your life back. But the first and most important thing is this: tune out bad advice and become the best expert in your body and what works and doesn’t work for you. Seek help and find communities that understand your situation. I cannot stress this enough: becoming an advocate for your own migraine care is so essential.

Support is available for anyone who may be distressed by phoning:

Lifeline 13 11 14

Mensline 1300 789 978

Kids Helpline 1800 551 800

beyondblue 1300 224 636

**

This mini migraine series was first published by Sheree Joseph on The Vocal here and here.