I was diagnosed with migraine when I was 5, and I can’t recall ever not having the terrible pain, nausea, and vomiting of the migraine attacks. By the time I was 9, a doctor noticed I was having seizures during the migraine.
For most of my life, I felt like I had some small bit of control: watch my diet, regularly exercise, get enough rest, etc. and the migraine attacks will stay relatively under control. Last year, when they became chronic, that illusion of control disintegrated.
Whenever I feel completely powerless to take care of or protect myself, all those CPTSD symptoms from the childhood of non-stop abuse – sexual, physical, emotional, psychological – also get out of control, making the migraine attacks much worse. The chronic migraine makes me feel trapped in my severely abusive childhood again, only this time I’m trapped in my own body.
Certain periods of my life have been much more difficult by migraine. If I had to graph it, I think my life would resemble slow, rolling, valleys and peaks that was the worst in my youth, in terms of severity and frequency.
Between ages 16 and 26, when I had a partial hysterectomy that seemed to cut that hormonal connection and roller coaster with my migraine. I still get them, but the truly bad ones are less and what I deal with now is duration of the migraine, sometimes lasting 3 weeks. Usually, toward the last few days is when the pain ramps up severity wise and I end up in the ER begging for relief.
I definitely feel that migraine has robbed me of a great deal of pleasure in my life. As a teen there have been parties avoided or not enjoyed because the loud music or boisterous talking and socializing led to a headache. I did not want to be an inconvenience so there was a lot I sucked up and just didn’t say anything about and paid for it later on.
As an adult, moments of my own children’s childhood could not be enjoyed because I had a migraine. The birth of my third and fourth children were experienced with raging migraines on top of labor pain. When my children were small, they would ask if my head was okay to play. At four years old they were aware of my headaches and they knew to play with inside voices if mummy was sick. Their childhood should not have been overshadowed by my migraine and I feel that at their tender ages, they were often thrust into a care taker role, even if it was a small one.
Today, though my migraine is less frequent, the duration is a struggle. It is just another thing tacked on to a litany of chronic issues I have that few understand. As I write this it is day four of a migraine that waxes and wanes in intensity, but I plod on with life. I don’t have a choice, because life doesn’t stop.
I’d love for every person who lives migraine free to understand just a little of what it is like living with migraine, without any of the symptoms, but then they wouldn’t really be experiencing it. At the very minimum I would love to be treated with respect and have my illness taken seriously so when I walk into an ER I am not suspected of trying to obtain drugs but treated as a patient with an illness needing treatment. One day, I hope for my youngest who suffers from migraines, that things will be better.
Until 2 1/2 years ago, I got a migraine only 2-3 times a year. For some unknown reason, they increased to daily and then went to multiple times a day.
In this time, My life has been torn apart and I had to stop doing all of the things I loved to do. I found a great doctor (after many tries) and even though it is a 6 hour round trip drive to see him, it is worth every mile!
My life is very slowly starting to build up again. I am determined to make it back to having a full, productive life.
There is still so much doctors don’t know about the brain. Managing migraines while living with Hydrocephalus is much more difficult to do than if you didn’t have it. Migraines are often misunderstood as a bad headache but it is so much more than that. Migraines are very debilitating and can affect your ability to be able to perform your daily activities.
I have always suffered from migraines but last April they started to get worse. Since I have Hydrocephalus, worsening migraines can be serious because that can be a sign that the shunt may not be working properly. After I had some tests run they discovered that my shunt tubing had broken off and that was probably what was giving me migraines. The shunt tubing helps drain any excess fluid to another part of the body so if that is not working it can cause migraines.
After having that repaired, my migraines should have gone away but unfortunately they did not! My migraines are better than they were, but not one hundred percent. I am confident I will get some relief eventually but until then I use natural remedies like peppermint and lavender essential oils to help make my migraines bearable. Hydrocephalus can be very frustrating when you have complications and there is no quick fix for it other than to try to be patient!
Chronic migraine has been a journey, to say the least. It’s been a journey of pain, suffering, loss, isolation, depression, anxiety, helplessness and defeat. However, it’s also been a journey of growth, resilience, independence, strength, courage, vulnerability and triumph.
You see, every day I fight a battle invisible to an untrained eye. I get up, shower, put on makeup and go about “every day, day-to-day tasks.” I do it with a smile on face, hiding what’s going on beneath the surface so as to appear like a functioning member of society. And most days I do a pretty good job, all the while silently suffering. Every day, despite that, I prove to myself that I can fight through almost anything, that I am stronger than my pain, that I’m an inspiration to someone, that my strength gives someone else strength to get up and fight another day.
Life with chronic migraine is all about riding the waves, watching the ebbs and flows of the contrast between the negative and the positive, and choosing to see the positivity despite the negativity. It’s seeing strength where most people would see weakness. Life with chronic migraine has shown me I’m a warrior, and you are too.
Severe chronic complex migraine, for me, didn’t strike until I’d gone off to college. With all the new-ness, stress, and chaotic attempts to keep up with academics and social life, my migraines came crashing down on me like a roaring tsunami.
I’d already experienced migraines for 8 years up to that point, but they were of a more episodic nature, beginning borderline-chronic. I had them under control to a point that I was living life well enough to get by without many complaints. The medication I took worked fairly well, the abortive and pain rescue medications I had at hand were acceptable.
It wasn’t until that first year of college was behind me that I realized the migraine situation was MORE than just an occasional nuisance—they were nearly every day at this point.
My migraines had turned chronic seemingly overnight, and it without a doubt turned my life upside down.
For me, chronic migraine is a life-disrupting, disheartening, absolutely hellish monster. It has stolen so many of life’s joys from me, so many hours and days that could have been spent being productive, happy, having fun, and just being alive.
Social life. Work. Hobbies. I automatically associate all of these words with my chronic migraine because my condition dictates every one of them. If I’m sick, I can’t spend time with loved ones. I miss out on celebrations, weekend fun, dinners out, and more. The hours I put in at work are mediocre at best, and I’m officially on medical leave. I don’t enjoy my hobbies to the fullest because the monster is lurking around the corner constantly, seizing me with anxiety for the next agonizing attack.
But chronic migraine hasn’t stolen my spirit.
Because of my diagnosis and suffering, life has become more beautiful. This sounds crazy, I’m sure, but it’s true. The mundane is amazing. Little things in life are more important than anything. Small accomplishments and my tiny victories make me proud. And the friends I’ve made through becoming a patient advocate and starting this blog are blessings I am thankful for every day.
Migraine may have stolen some of life’s most essential moments, but it has given me gifts as well. Patience. Kindness. Gratitude. Things I wouldn’t have had I not gone through the pain. As they say, “you can’t have a rainbow without a little rain.”