Chronic Headache/Migraine

Illness Army: “Appearance Versus Reality”

I’ve always loved watching waves barrelling into the shore, crashing onto the rocks, fizzing into nothingness, and then being sucked back out to sea. I’ve never loved the fact that living my life feels akin to being one of the tiny grains of sand on an ocean beach, being relentlessly pummelled by wave after wave.

Despite being human, I often feel as powerless as a grain of sand. Unable to move, to protest, to stand up to my aggressor. It’s impossible to get a grip on a wave – if you reach out to catch it, the water simply slips through your fingers; or worse it can rip you off your feet and drag you out into the wide ocean.

Unlike watching waves crash, I can’t simply walk away from my life when I get tired of the spectacle. The only thing I can stand up and say I steadfastly believe is that I want to be alive. I want to live.

Unfortunately, I’ve spent a great deal of time in my life not living, but simply surviving. But I keep going. I pushed through two horrid years of chronic headache which responded not to medication, nor massage, nor meditation, nor dry-needling, nor cortisone treatment in hospital…

Chronic pain was accompanied by depression, a sense of complete and utter hopelessness, severe anxiety, and anorexia. And somewhere along the way, the line between mental and physical illness blurred and the relationship became such that depression was causing the chronic pain to continue, despite the chronic pain having caused the depression to begin with.

Anorexia was a way of coping with hopelessness. I adopted a fatalistic stance on life – there was no point hoping, it wasn’t worth looking after myself, I wasn’t worthy of food or enjoyment or life. I focused solely on food – calorie calculations, thinking up ways to avoid food, inventing recipes, researching food ingredients and nutritional information, creating more and more rules. So I wound up in hospital. For eight weeks. I fought off anorexia, like a crab with its pincers in the air, snapping at the thoughts and beliefs that had caused me to waste away and starve myself.

Life jerked up and down after that, until finally, remarkably, the headache began to gradually fade. I felt fully alive for the first time in two years. I was having cranio-sacral therapy, doing volunteer work, yoga, and French lessons, writing, gardening, cooking – living what felt like a full and satisfying life.

But as a 17-year-old, this couldn’t continue. I had to go back to school. So I did VCE. I did brilliantly – got a fantastically high ATAR, two perfect scores, got into the University of Melbourne, contributed to school life. I appeared, for all intents and purposes, to be a successful, satisfied student. But scratch just below that veneer and you would have seen reality. Throughout year twelve, I felt like I was simply holding on to fragments of my life in the hope that once the barrage of exams, revision, SACs and homework was over, I’d be able to put them back together.

I withstood 21 migraines, sustained by the belief that things would get better once the year was over. 21 times last year my vision blurred uncontrollably. 21 times last year I was forced to my bed. 21 times last year I endured agonising pain, waves of nausea and often unmanageable urges to hurt myself or to kill myself.

Along with the migraines came intense anxiety, suicidal thoughts, self-harm, and bouts of anorexic thoughts and urges.
Again, sustained by the hope that 2016 would spell release from all this suffering, I would gather myself up out of the hole each migraine pushed me into, and got on with the task at hand – school.

I not only studied but blogged, did lots of advocacy and fundraising for mental illness, continued my role as a speaker with beyondblue, I participated in school choir, made it to the state finals of Lions Youth of the Year, made many public speeches, did yoga, and generally appeared to have my shit together.

But after over a year of pretending, hoping and pushing myself, I feel like I’ve run aground. 2016 has been the opposite of release. My illness has continued pounding me, with wave after wave of migraines and headaches. I’m on ‘holidays’, but I don’t feel like I’ve had a holiday at all – the waves simply haven’t let up.

I’ve missed social engagement after social engagement, I’ve spent hours upon hours at medical appointments, I’ve hit myself in the head time after time, and I’ve shed countless tears.

Outwardly, I’ve accomplished much. I’ve continued yoga, started volunteering at a Vinnies soup van, got myself sorted ready for the start of my bachelor of arts next week, I’ve delivered speeches as a speaker for beyondblue, I’ve written heaps, I’ve cooked, I’ve spent time with friends and family.

I’ve done everything right. I’m about to start studying at a prestigious university. My friends and family love me.Medically, I have a clean bill of health. Every appointment brings the same conclusion: there’s nothing wrong with you, you’re doing super well, you’ll have to manage it as best you can, we’ll try this but it’s not a magic fix-all.

But I feel horrible. I can’t live in the cycle I’m stuck with – migraine, self-harm, loss of hope, grief, claw my way back, hope, motivation… migraine. This cycle is also punctuated by debilitating headaches, and pervasive anxiety about my health which follows me everywhere I go.

All I want is to be a normal 19-year-old, but I don’t feel like a whole person. I exist only in the spaces between migraines. Each migraine takes away a little more space, a little more of me. It saps more energy, deepens my mental illness, distances me from my family and friends, makes me feel less alive.

Despite this, I continue the battle. I am deeply, irrefutably committed to life.

I really encourage you to follow the author of this post, Emma at  https://lovehopepeaceinitiative.wordpress.com/

Emma’s blog is about her quest to live a healthy, happy life.
She is only 19 and throughout her teenage years she has suffered from Physical (Chronic Headache and Migraine) and Mental (Depression, Anxiety, Anorexia Nervosa) Health issues. Her blog is a combination of personal reflections, book reviews, poetry and wellness tips; inspired her own experience, nature, philosophy, people, language, yoga, books and love for music.

If you have a story similar to this that you’d like published, please check out our Submissions Guidelines Page for me details on how!

Illness Army: “Pardon My Grumpiness, I’ve Had a Headache For… Always”

My first headache was after a painting lesson from my great aunt when I was 8 years old. And ever since.

I’m 42.

Is it my sinuses?
In the beginning, I suspect sinus headaches because congestion and watery eyes often seem to accompany the head pain. I do allergy testing and a CT scan of my sinuses. Nothing. I continue to try to figure out the cause of my headaches, but they are not occurring every day at this point so my efforts with primary care doctors are sporadic. And fruitless, obviously.

Is it my posture?
My headaches are about half the time now. I’m trying to take care of my sweet toddler while dealing with the pain. I go to a chiropractor and tell her it feels like work to hold my head up. I say that my head always feels heavy or like there is some kind of pressure. Sitting at a desk all day, she says. Except I’m a stay at home mom at this point. This leads me to burn through chiropractors, acupuncturists and massage and physical therapists with no relief.

I wouldn’t call them migraines, but you can if you want.
Headaches are pretty much constant. I am trying to work and take care of my daughter. My primary physician refers me to a neurologist. Neurologist says my headaches have “migraine like tendencies”. I do not accept this in my head—I have no aura, blurred vision, sensitivity to light and sound, nausea and no particular point of onset as the headaches are present at all times—but go along because I have no better diagnosis since I’m, ya know, not a doctor. We try every migraine medication there is. Unsurprisingly to me, none of them work.

So it’s my neck then?
Headaches are depressing me. I hate everyone and everything. There’s no end in sight. I have to find a solution. I feel like the pain definitely originates in my neck or the base of my skull. My neurologist sends me to a spine center where I receive facet injections. Unsurprisingly to me, nothing happens.

How about a nerve thing?
I ride the roller coaster of determination and depression. Know I’m supposed to be enjoying my life, but hate it instead. I continue to harp on the fact that the head pain is occipital (back of the head) and that, while they can spread to other parts of my head, the main event occurs in the back. After googling my symptoms umpteen times, I suggest occipital neuralgia. To my neurologist. Me. Suggesting to her. Sigh. She agrees maybe that’s it.

We do a round of nerve blocks to test this theory. They work. I have relief! But nerve blocks wear off. And they are incredibly painful. Still, I go back for a second round. Relief again! I am thinking I found the magic cure. Then rounds 3 and 4 do not work. I learn this is typical of nerve blocks. They don’t last. What next?

Might as well try botox.
Neurologist says let’s move on to botox. I never believe botox will work because I don’t feel that these are migraine headaches. But I’m not a doctor so sure, let’s do botox. Unsurprisingly to me, nothing happens. They say botox can take up to 5 treatments to work. I keep going back way beyond 5 for no particular reason besides that I have no other action to take. And it does keep brow crinkle at bay.

Let’s go back to that nerve thing.
More years, more research. The pain, at varying degrees of intensity, is present 24/7. I feel completely alone and like diagnosis and treatment is all up to me. A friend shows me a new story about a local woman who had her migraine headaches fixed by peripheral nerve surgery. Her headaches sound like my headaches!

I meet with the plastic surgeon (yeah, THEY’RE the ones who do this surgery) who performed the local woman’s surgery. He gives me an occipital nerve block even though he knows my history and that the nerve blocks quit working for me. Unsurprisingly, the nerve block does nothing and he determines I am not a candidate for the surgery. If I were a candidate, the nerve block would have worked, he says. Except that nerve blocks DID work. They just don’t anymore. Still, for some reason, I accept his ruling. You get beaten down, I suppose.

A year later, I go to a plastic surgeon who is a leader in this field and 10 hours away for a second opinion. He does a thorough screening via questionnaire and a consultation before determining that yes, I am a candidate for this surgery. For once, I feel like everything makes sense.

I return to my hometown and the original surgeon. I don’t trust him for sending me away the first time, but reason that he is a “Top Doc” in my city. Very experienced with this surgery. I find only glowing reviews and several accolades. Still, I am secretly resentful when he states “it seemed like I had done my homework” and we can go ahead and try the surgery.

Did it work?
I had peripheral nerve surgery 5 weeks ago. Insurance didn’t pay for this “experimental surgery” so I took a bit of a gamble when I spent $8000 out-of-pocket. The surgery has an 85-90% success rate depending on who you talk to. Unsurprisingly to me, the headaches are still present. I am told this is normal at this point. I have trust issues where headache treatments are concerned. Still, I try to have faith that the doctor is correct when he states that it’s a long road and not an instant fix.

People tell me “I don’t know how you do it. I can’t do anything when I have a headache.”
Yeah, me neither! Except that I have to. I can’t just lay down and die. I have a daughter. I have a job. I have bills. I have to live.
But it’s sure getting harder to want to.

A big thank you to the author of this post, Jennifer, who can be found at www.growingtowardthesun.com

Jennifer is a graphic designer who spends lots of time trying to escape the pain via Netflix, blogging and talking to her 13 year old about the meaning of life.
She has chosen to write about her Headaches and Migraines for anyone who has suffered, and are googling them every day like she did, hoping to find answers.

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