Are We Misunderstood?
The disability that chronic migraines cause is significantly underestimated by our society. Large numbers of the population do not receive effective treatment or care for this medical condition.
Because it is too often dismissed as just a headache. Take two aspirin and call me in the morning kind of thing.
The whole idea of it being a neurological disorder is misunderstood. Or perhaps it is just widely unknown.
I certainly feel and think we are misunderstood. For example, most women forget to not wear perfume around me, even when I ask them.
The effects of long term migraine attacks: physically, emotionally, and financially can not often be comprehended unless you are a sufferer yourself.
Many migraineurs are forced to leave the work they love and need to juggle higher medical costs with lower income.
The definition of chronic is: long-lasting; always present or recurring; habitual; constant; continuing a long time or recurring frequently; having long had a disease, habit, or weakness, of 6 months or more.
I always thought I was a late bloomer in chronic migraine headache terms. I was 32 when I had my first migraine but according to the World Health Organization (WHO) website it commonly affects people between the ages of 35 and 45 years old, and can trouble children as well.
Most recently they have discovered that they certainly have a genetic component. Many actions of the process surrounding the “release of pain producing inflammatory substances around the nerves and blood vessels” remain uncertain.
I can still remember my first surprise attack way back in 1992. I was having a Kit Kat bar at work and then half an hour later whamo! Vomiting and excruciating head pain, just on the right side. Then my face started to swell up. That took me by surprise. By the time I got home I could not see out of my right eye. I nearly passed out on the ferry on the way home. Or maybe I did!
Another time, I remember vomiting in a trash can on the street, in downtown Sydney, on the way to the ferry! One of the most embarrassing days for me as I, once again, tried to get home. I clearly recall hanging over the side of the ferry in a VERY short business skirt. A very kind gentleman (hopefully!) offered to hold me so as not to fall over board. Now I can laugh, but then I was ashamed.
World Health Organization (WHO) rates chronic migraine headache as a leading cause of disability worldwide.
15-18% of women, 6-8% of men, and 2% of children suffer from migraine headaches.
WHO also states the chronic migraine “headache has been and continues to be underestimated in scope and scale, and headache disorders remain under-recognized and under-treated throughout the world.”
Chronic Migraines are an isolating condition for which there is no cure. Science has been studying the causes of migraine headaches for many years and the theories have evolved from drilling holes in skulls (yes – we did that – barbaric I would say!), to vascular, to an over reactive nervous system disorder, that now includes genetic components like the TRESK gene mutation.
You might like to read what causes migraines for more details on the Tresk gene.
My migraines have gotten less intense, and I no longer am convinced I am going to die with each attack.
After over 20 years, I finally know I will make it through yet another episode.
The patterns have changed unpredictably over the years which I hope have gifted me with more patience!
Some are left sided, and some are right sided. Some come up my neck and some start in my eyes. Some make me angry and some make me cry. Some still make my face swell up just on one side.
There is and has never been much of a pattern. Dr. Paul Spira, from Sydney’s Prince of Wales Hospital, told me after 2 years of keeping a migraine diary, that there is no pattern for me.
I think you have to cover all your bases!
Educating yourself is also essential.
So many years, so many doctors! I would hate to add up how much money I have had to spend on my health just to maintain average. The cost of a few houses I am sure.
I think it helps to remember to feel gratitude. I am grateful that migraines have slowed down my life enough to see what is really important. To see what friends have been able to stand by my side so to speak, and I must say there are only one or two.
To make me think about what work I am able to do within the limits of this condition and still feel fulfilled, happy and loving. I feel I have actually become a much more compassionate human being because of this challenge in my life. I now lead a slow paced and simple life.
It brings to mind this wonderful quote:
“People are often unreasonable and self-centered.
Forgive them anyway.
If you are kind, people may accuse you of ulterior motives.
Be kind anyway.
If you are honest, people may cheat you.
Be honest anyway.
If you find happiness, people may be jealous.
Be happy anyway.
The good you do today may be forgotten tomorrow.
Do good anyway.
Give the world the best you have and it may never be enough.
Give your best anyway.
For you see, in the end, it is between you and God.
It was never between you and them anyway.”
― Mother Teresa
Please share your experience in migraine stories. I truly believe that we can learn so much from each other and other migraine sufferers who completely understand migraine.
Until next time, be well and be pain free,
Types of Migraines
Chronic Migraines: Are We Misunderstood?