Friday, 17 March 2017

Life With Chronic Migraine

Art by Jacquie Boyd (click on pic to view link)
Since I was 6, I have suffered with nasty migraines. The first time I was hit by one was at a birthday party. I remember eating jelly and ice cream and playing Pass The Parcel. Kylie Minogue's Locomotion was blasting out of the cassette player. I started to see black and white objects floating in front of my eyes. I asked my friend if she could see them too and she shook her head. I tried to ignore it, but when the pain arrived, it was like my skull was being cracked apart with a hammer. I then barfed all over myself; and I must've passed out, because the next thing I remember is waking up on my couch a few hours later, feeling awful.

From then on, I have been blighted with migraines and they have gotten worse as I get older. The migraines only used to last about a day and occurred maybe once a month. The impact on my life was minimal throughout childhood, my teens and early 20s. Then, a few years ago, the migraines started coming more frequently and became more painful, lasting several days at a time. Now in my early 30s, I am sick with migraines for nearly 3 weeks a month.

Shortly before the pain strikes, I am tired, anxious, craving sugar, and I start to become extra-sensitive to light and sound. It is like the strange eerie atmosphere before the hurricane arrives. This is the prodrome phase.

The aura phase usually arrives a day ater (though sometimes, my migraines skip the aura and head straight to the attack phase, no pun intended). This is where the black and white trains and worms come out to play, obscuring my vision and making me dizzy (it's strange that it is always the black and white trains and worms!) Sometimes, I go temporarily blind in my left eye. The aura strikes me with dread because I know what's coming next: the pain, also known as the attack phase.

The attack phase is like a nuclear bomb going off in my head. A heavy thumping pain erupts on one side of my head. My senses are distorted; light, sounds and smells are unbearable. Everything becomes painfully brighter and louder. I can smell the plug-in air freshener downstairs in the kitchen from my bedroom and become extremely afraid of anything scented! I cannot tolerate heat, and experience hot and cold sweats. The sounds of the outside world pummel my ears. Talking lacerates my brain. All I can do is lay in a completely darkened room, with an electric fan blowing on my head and a sick bowl by my side, until it passes. I often vomit during migraines, which is why I have sumatriptan injections. The pain is so awful at times that I've wanted to bash my brains out on the wall to end my misery.

Once the migraine ends, I enter the postdrome phase, also known as a 'migraine hangover'; which often lasts a few days. When the pain subsides, I am so relieved that I experience a brief euphoria. I am completely wiped out and fatigued, and I fall into a deep sleep. I also crave sugar and carbs, feel emotional, foggy, and detached from reality. The world is still too bright, too noisy and too smelly. During this phase, I cannot use sprays, aerosols, perfumes and cleaning products, as they trigger the migraine again. Hot baths and showers are a no-no; the heat and steam are triggers too.

And once that final phase ends; the whole damn cycle starts again: another migraine arrives.

I have about 5-7 migraine-free days a month. Needlessly to say, I am unable to live a normal life like this. This is chronic migraine, which is defined as a migraine more than fifteen days a month. This is on top of the other medical problems I deal with, such as the lupus, myositis and mental health issues. My life at the moment is all about migraines. When I don't have a migraine, I am worrying about the next one.

Migraine itself is classified as a primary syndrome, but it is also a symptom in the diagnostic criteria for lupus (migraine is considered a neurologic disorder). Many doctors say that a 'true' lupus migraine only goes away with steroid treatment. But there are many other possible causes of migraines amongst lupus sufferers, such as CNS lupus, vasculitis, APS, medication side effects, high blood pressure, other illnesses such as Raynaud's and fibromyalgia, stress and migraine as a primary disorder separate from lupus. Lupus presents with an enormous range of symptoms and overlap disorders are common in lupus. This, combined with the many meds we take, makes it difficult to know precisely what is causing the migraines in each individual lupus patient.

I was diagnosed with lupus and myositis in my early 20s, based on a tripod of symptoms: migraines, joint pain and fatigue; and blood tests. Therefore, I assumed that the migraines were lupus-related. My GPs assumed so too, so they believed the migraines would be best handled by the rheumatologist. But the rheumatologists disagreed, because I repeatedly tested negative (and still do) for antiphospholipid antibodies. Over the years, my doctors and specialists have been in disagreement about the cause of my migraines, and believed that it was not their responsibility to deal with them. So due to this, I had to go without treatment for my migraines for many years.

Without treatment, the migraines were excruciating. I would lay in bed, crying and wanting to die. I took stupid risks in my desperation, such as taking abnormal doses of aspirin (my migraines respond quicker to anti-inflammatories, but due to gastritis, I'm not meant to take them).

Currently, I take propranolol as a preventative measure, and sumatriptan injections to abort the migraines. I am new to the injection pens and it is taking some getting used to. I have to fumble with the release button and the other day, my hand slipped, the needle got bent as it went in and nearly snapped off clean in half in my leg. I needed to lay down after that. The injections work fast - within 10 minutes, they start to work. The sumatriptan makes me sleepy and dopey, and I soon fall asleep. I try to avoid using them too often, because of rebound migraines and developing tolerance to the drug. The propranolol - a beta blocker - is starting to reduce the severity and length of my migraines. This gives me hope that I can soon get my migraines under control and begin to take some of my life back. I do not want my life to be all about the migraines. They are not part of me. They are just unwelcome visitors, who frequently gatecrash my life, stay for a while, wreck the joint, and then leave me in peace so I can pick up the pieces, for a few hours or days, before they come back.


Do you suffer with migraines? Please feel free to share your experiences in the comments box.

Note: You may be interested in reading this article by another migraine sufferer: