seeking joy in a life with chronic migraine, chronic daily headache and chronic illness
What do you want to know about headaches and migraines, biology and physiology, or anything else health-related? The Daily Headache is a resource for you as much as it is a catharsis for me. So, what’s on your mind?
At the risk of sounding like every teacher you’ve ever had, there are no stupid questions. And if you have a question, it’s likely that others wonder the same thing. Really. If you’re embarrassed to ask it in the comments of a post, you’re always welcome to e-mail it to me.
I know a migraine can’t actually kill me, but there are days I’m sure I’m dying. I woke up in pain, but thought I’d aborted the migraine until I took a short walk. The cold air on my forehead caused searing pain. Rubbing the bridge of my nose, the classic headache pose, only intensified the pain.
I’m exhausted and spacey, pale with dark circles under my eyes, sweating and freezing, sensitive to touch and smells. Did I mention that I can barely think?
Running errands, I moved my car four blocks because I couldn’t stand the cold and didn’t have enough energy to walk the required eight blocks to and from my destination. Knowing making dinner would be impossible, I stopped at a new place with takeaway meals. The staff was excited to show me around and tell me what the place is all about, but I could barely comprehend what they were saying. I finally told them that I had a migraine and wasn’t up to talking. Something that I rarely, rarely do.
Now I’m home, both in place and spirit. Still, it’s going to be a long day.
Fallon explains one of the biggest relationship stressors headache sufferers endure: Someone who has never had a severe headache or migraine simply cannot understand your suffering, no matter how clear your description and apparent your agony is.
“As I said ages ago, those who’ve never experienced a migraine, just don’t get it. Never have. Never will. That fact isn’t likely to change, so I no longer waste my breath trying to explain. But, I’m not above begging and pleading when the need arises. And I think the need has definitely risen to gargantuan proportions. . . .”
“I’ve begun to believe it’s a mental block in the minds of non-migraine sufferers. They hear the word and something just… blanks.”
A drawback of all the available treatments is that patients can be overwhelmed. Designing a personal headache treatment plan will help keep you and your doctor on the best path for you. It will help you choose the medicines that are most likely to reduce your most troublesome symptoms, can integrate alternative or complementary treatments and may even ease the stress if you have to go to the ER.
HealthTalk is producing a webcast called Building Your Migraine Treatment Plan with headache specialist Robert P. Cowan. He will answer patients’ questions during part of the show. You can submit your questions in advance or during the live webcast.
The program starts at 7 p.m. EST tomorrow — Wednesday, March 21. Starting about 10 minutes before the webcast, go to the program’s description page and look for a link that says “Join the Program.”
For more about treatment plans, see the ACHE article, Headache Medicines: Which One is Right for You?
You can also check out the two previous webcasts: What Makes a Migraine a Migraine? and Why Do Women Get More Migraines Than Men? I haven’t listened to the first one, but the second one has terrific information for women and men. Dr. Christina Peterson was one of the specialists on the show. I’ve been waiting for a transcript to write about it, but it’s so great that I should dive in anyway.
This flowed out of Don’t Give Up on Finding a Treatment. It’s the most effective of all the headache treatments I’ve tried — and the hardest to get.
You may be surprised to learn I feel I’ve had success in treating my headaches. I still have pain, mental fogginess, a super sniffer and many other largely unknown symptoms of migraine. Yet I’m full of hope.
To me, hope isn’t about finding a magic bullet. It’s knowing that I can have a full and joyous life despite my illness. Something that I wrote when I first started blogging explains this idea well:
The Anatomy of Hope, by Dr. Jerome Groopman, draws a line between hope and positive thinking. Groopman, an oncologist and hematologist, has treated patients with life-threatening illness for 30 years, many of whom have survived against the odds. The definition of hope that he offers is that “Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.”
The better future he mentions does not require living without disease. Yes, people often overcome their diseases or are able to live without pain. But the better future Groopman describes can also be learning to live joyously even with debility.
Two years ago I didn’t understand the distinction. I am thankful for the time I spent in denial, but am even more grateful that my current version of being positive is rooted in reality. A reality that means I spend more days than I want in bed, but that I’m not emotionally miserable on those days.
I’m not saying that you just have to be positive and your headaches will go away. Nor do I think you can simply decide to accept your fate and go from there. Like all things in life, it’s a process. There’s no timeline to follow, but you will notice that you’ve began to have more acceptance than you once did.
If you want some help along the way, check out The Chronic Illness Workbook