Living with Chronic Migraines; My Personal Experience
A migraine, by definition, is a severe, painful headache that lasts anywhere from a few minutes to several days. When you get that painful headache for over 15 days in a month, doctors define that as chronic migraines. My name is Brian Wangila, I’m 25 years old and for the past 8 years, I’ve been suffering from chronic migraines and continuous headaches.
It is really difficult to explain what it feels like to have a migraine, but I’ll try. Have you ever hit your finger by accident while trying to close a door? You get that throbbing surge of pain to your finger. Well, a migraine is like leaving your finger there and banging the door on it again and again and again and again.. Sometimes, right before a migraine attack, I get an aura. An aura is like a warning to brace myself; it’s a surefire signal of an impending migraine in the next 20 minutes or less— my vision gets a bit blurry and I feel dizzy all of a sudden. What follows is the most intense and debilitating pain that I have ever felt — It’s like there is this intense pressure forming inside my head that wants to break through from inside my eye. It feels as though someone is pounding a nail with a hammer just above my left eye.
At that time, I want to mute everything around me. Any little sounds become amplified and make the pounding worse. I become extremely sensitive to light. I just want to lie down quietly in a dark place. I take a mixed blend of painkillers to help ease the pain. Unfortunately, most of the time, they don’t seem to work fast enough and all I can do is wait it out. Sometimes it could take a few minutes, other times hours, and the really bad ones could last several days. Then it slowly eases off…into the continuous headaches.
I have been suffering from migraines for so long, I cannot remember a day I was not in pain. I actually can’t remember how it feels to not be in pain. I have a pain scale to be able to track the days. 0–10, 0 being no pain and 10 being extreme pain.
- A good day is 0–4. 4 is what most people consider to be a very bad headache and would probably call in sick. On such day, we can have a conversation, laugh and make jokes, I can go out for a bit, reply some emails, get some work done and do a few things.
- A not so good day is a 5–7. This one will have me indoors, mostly in bed or sitting quietly. I’m usually fatigued so movement is limited. I have nausea and lack appetite. Conversations are limited to bare minimum.
- A bad day is 8–11. Here, I’ve probably been having a sustained migraine for over a day. I’m in so much pain I barely leave my bed. Almost no movement or conversation. Probably headed to hospital for an admission to manage the pain.
I have done all manner of scans and tests but all of them come out normal. I’ve been admitted so many times I no longer twitch when getting an injection. In a day I take more tablets than I care to count. I have been prayed for by so many pastors. I have tried herbal medicines, living healthy and exercise. Last year, through the enormous support of friends and family, I went to India to seek further treatment. Unfortunately, none of these seem to have worked. Right now, if you told me that jumping up and down and running round a tree 21 time would reduce the migraines, I’d do it with no hesitation. I’m at that point of desperation where I’d do anything just to take the pain away.
The past year has been my toughest yet. The intensity and frequency of the migraines has increased. It’s nigh impossible to single out a day this year when I had no pain. What most people don’t know is that the only thing worse than the pain of migraines, is what living in continuous pain does to your life. Most times it seems like I am a passenger in my own life, like I have no control over what is going on. I feel like life is passing me by. Everyone seems to be moving on whereas my life has stagnated into a series of pain, medication, injections and hospitals. I know everything happens for a reason and in God’s timing but it’s hard to believe that with each passing day.
I can’t plan anything because I could get a migraine attack at literally any point in time. I’m always terrified and worried because any moment when the pain has eased seems like a calm before the storm. I’ve had to press pause on most aspects of my life. It very difficult to smile when you’re in pain. It’s hard to find a reason to get out of bed every morning when there’s not much you can do.
Social life has been greatly affected. My family and loved ones do their best to be there for me and I really appreciate it, but I see the strain that all these is causing them and I can’t shake the sense of guilt. Most friends and relatives moved on and I don’t really blame them. I can count the number of people who still keep in touch, those who’ve been with me through all this, those who genuinely want to know how things are going — May God bless you all, I could never repay you.
My education has been affected. I’ve lost two scholarships because of health reasons. I’ve had to discontinue my university degree three times in as many universities because I couldn’t manage the mandatory hours for class attendance. Now I’m studying online…still trying to complete my first degree seven years down the line. With each passing day I lose the zeal to go on.
I used to be very angry with everyone and on the brink of depression. It didn’t make sense to me why other people could go on with their merry lives while I sat in pain, what I’d done to deserve such pain. However, over the years I’ve gotten to understand more about migraines. I’ve learnt some of the things that trigger the migraines. I’ve reduced my expectations about happiness and success. Most days I can’t do much, so I set a daily goal for myself — if I can upload one photo from my archives to my Instagram account, have at least one conversation and finish a meal, then I’ve completed my daily to do list. I’ve come to terms with the fact that my life is far from normal.
Everyday I try my best to hang in there. I look for a reason to smile in the most mundane of things. Everytime I manage a conversation, I manage to finish a meal, I get some decent sleep, I manage to get out of bed…I smile and hang on to that moment to help me push forward. There’s no sugarcoating it — all this is very hard but I continue to fight on. I’ve learnt to live in the moment. I make the most out of good days — I go out and have fun, laugh with the family, go on a road trip somewhere and make some new memories. I try to take the not so good days in my stride and hope for a better tomorrow. I refuse to give up hope. One day, this too shall pass…
If you want to know how you can help, here’s an open letter from a person living with chronic pain