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4 Things People Still Don't Seem to Understand About Chronic Migraine

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I have struggled with migraines since the age of 6. A migraine often involves a severe and nasty headache, with throbbing pain on one side of the head. People with migraine may also have additional symptoms such as vomiting, nausea, stomach pain and sensitivity to light, sound and smells.

At first, my migraines hit me every few months, but they resolved quickly and did not have too much of an impact on my life.

But as I got older, the migraines became more frequent and nasty. I’m 34 years old now, and the migraines have taken over my life. I have chronic migraine disorder, because now, for up to half of each month, I’m sick with migraines.

As a long-time migraine warrior, I’ve experienced many ignorant and negative reactions to my illness from other people over the years. I would like to address some of these:

1. It’s not “just” a headache.

A headache and a migraine are two different things. Migraines can last from a few hours to days. In my case, my migraines can go on for weeks at a time. A headache usually resolves in a few hours by itself or with over-the-counter painkillers, but with a migraine, I have to take several different strong medications prescribed to me by a doctor.

A migraine – but not a headache – is often accompanied by other symptoms such as vomiting, stomach pain, sensitivity to light, sound and fragrance, and often an “aura” that occurs before the pain arrives – causing visual distortions, dizziness, sweating, mood changes and nausea.

2. A migraine is physically debilitating.

When my migraines strike, they often begin with an aura of dizziness and zig zag lines dancing across my vision, which interferes with my balance and vision. In many cases, I temporarily lose my vision in one eye.

I also become extremely sensitive to light, sound and smells. I become physically weak during and after migraine attacks, and experience joint pains and muscle aches during and after migraines.

All I can do when I have a migraine is take my meds and lie down in a quiet, dark room with blackout curtains, a fan blowing cool air into my face and an ice pack on my head, until it passes.

If a migraine strikes on the rare occasions I leave the house, I have to call someone to rescue me, because I cannot move or see properly.

3. My migraines have a huge impact on my life and on my loved ones.

I have other chronic illnesses – lupus, myositis, seizures, anxiety, depression, PTSD and borderline personality disorder, which are serious conditions – but none have as much impact on my life as my migraines currently do.

I spend so much time battling my illnesses, that I do not have much time to do anything else. I’m unemployed and my university studies are currently suspended. I’m housebound 95 percent of the time, only leaving the house for medical appointments.

I am completely dependent on other people during migraines. I am very lucky to have a long-term partner who cares for me and understands. He has to help me with everything from dressing to using the bathroom to eating and drinking, to taking my medications. He works full-time and has recently undergone kidney stone surgery and I worry that my migraines and other illnesses put a strain on him. He never complains, but I still feel guilty!

During a migraine, we have to press pause on our home life. My partner is not able to cook or clean during my migraines, because the smells of cooking food and cleaning products hurt like hell. Even the sound of the clock ticking in the hallway causes me distress.

Also, due to the frequency of my chronic migraines, I often have to cancel plans and appointments, which causes my loved ones to be disappointed with me and my doctors and specialists to believe that I’m not serious about my health.

As a result, I have lost many friends and have become isolated. I have given up making plans and now I only leave the house for medical appointments (which I have to cancel sometimes). All I can do is take each day as it comes.

4. Just because you can’t see my migraines, it doesn’t mean they don’t exist.

What enrages me more than anything is when people doubt my migraines because they can’t physically see them. Even my doctors are skeptical sometimes because when I am able to make it to appointments, I often don’t have a migraine.

The migraines cause me immense pain and suffering. This weekend just gone, I got hit with the worst migraine I’ve had in years. I lay in bed for most of the weekend, curled up into a ball, bawling my eyes out because of the pain, sweating profusely and shaking violently from the pain. I begged my partner to put me out of my misery.

I spent a lot of the weekend with my head hung over the toilet bowl. I vomited so profusely that my voice is currently hoarse and it hurts to speak or swallow. My stomach and esophagus are searing from all the acid I brought up. It felt like a beast was trying to claw out of my stomach and my brain was exploding.

I became very anxious for a while. I couldn’t breathe; it felt like I was being suffocated by the pain. I was afraid that my suffering would go on forever. “Make it stop!” I kept howling at my partner.

All this suffering goes on beneath the surface – physically and mentally. You cannot see my suffering. You cannot see what goes on beneath the surface and behind closed doors. But it is still there.

So it makes my blood boil when the hellish experiences I go through with my migraines are brushed away with dismissal and disbelief. Dismissing my migraines or refusing to believe them doesn’t make them go away.

I wouldn’t wish my migraines on anyone, but sometimes during my nastiest migraines, I cannot help but wish people knew what it was like to go through migraines, so they would understand what I go through.

Like I have said to other people about my other chronic illnesses, “I don’t want any pity or sympathy, all I want is kindness and understanding.”

Living with chronic migraines is a very isolating and solitary existence. I feel disconnected from people, even if there are people around me. I dream of what my life would be like without migraines; I dream of what it would be like to be one of those people.

I dream of freedom.

Getty Image by fizkes

Originally published: January 26, 2019
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