seeking joy in a life with chronic migraine, chronic daily headache and chronic illness
This is brilliant!
I really feel like I’ve been facing Godzilla the last couple months. The occipital nerve blocks worsened my migraines for a month. As soon as I recovered, I started on Lyrica for migraine prevention and wound up with massive fatigue and severe depression. I’m still a little depressed, but am coming out of it gradually. Hope to see you again soon!
For years I have complained to my primary care providers that I have frequent earaches, but my ears always look perfect. I tell dentists that a few teeth are extremely sensitive to heat, cold and sweets, though the pain is inexplicably intermittent. I often wonder if I have a torn contact because one eye feels like there’s a grain of sand lodged in it. Yet I can never find an identifiable cause for the pain in my ears, teeth or eyes. At least, I couldn’t until my migraines turned from constant to cyclical. Turns out I only have the aforementioned symptoms when I have a migraine. Of course, when I had a migraine all the time, I had these symptoms all the time. Now that the migraines come and go, so do the other pains.
None of these particular complaints show up on the long list of little-known migraine symptoms, though they’ve come up in my conversations with other migraineurs. The majority of the world equates migraine with headache, but there’s so much more going on in this neurological disorder. If I could trade, I’d keep the pain if it meant I could get rid of the fatigue and fuzzy-headedness. (Not that I have any say in how the migraines behave.)
I wonder what other migraine symptoms have yet to be recognized. What are your unusual migraine symptoms? Do any of them bother you more than the pain part of the migraine?
Here’s the third installment of my answers to Molly’s questions. Molly has already heard from many of you and is thankful for your honest, unveiled answers to some tough questions. I’m sure she would appreciate any more answers that trickle in. To help with the design project, send your answers to her at mmcgee@risd.edu. (Does this read like an NPR fund drive script or is it just me?)
4. Are your family and friends or coworkers understanding of your pain?
Mostly yes.
My headaches became debilitating while I was in grad school and teaching. I often had to have friends cover for me. One friend in particular took many of my classes. He was very helpful and understanding at first, but I depended on him way too much. We’re not friends anymore. Most of my students were understanding, others weren’t. It mostly broke down by the feel of the class. The least understanding bunch was the semester when I missed three out of the four first classes. I never felt like I established a good relationship with them and they challenged me verbally more than any other class.
I worked at the place I wound up at after grad school for three years. The first year and a half I managed to hide my debility and work my butt off. Things went way downhill after that. Most of my co-workers were understanding and personally supportive, but I know that my missed deadlines and many absences were frustrating for others.
My friends and family are wonderful. Before I recognized how severely my health affected me, I lost several friendships because of my “flakiness.” I couldn’t explain to them what was going on; I didn’t know myself. Other relationships have shaken out over time, but growing up has contributed to ending some friendships. Now I’m surrounded by people who believe and support me. And it’s terrific.
5. Finally, write anything you think is important. What is the most important thing you want to express about migraines?
Headache isn’t curable. It’s treatable and symptoms can be minimized or even disappear for many patients, but even these people still have the underlying disease. As someone who falls into the not-really-treatable category, the most important part of my treatment has been accepting that this disease isn’t going away. After many years of fighting nonstop, I’ve accepted that I will probably never have a pain-free day in my life. As much as this may seem like resignation, it’s not. The more that I accept migraine and CDH as part of my life, the less of a hold they have on me.
Migraine and CDH (at least in CDH from transformed migraine) don’t just cause pain, but have a collection manifestations. These include odor hallucinations, weakness or heaviness in limbs on one side of body, numbness or tingling of face, confusion, disorientation, difficulty finding words, problems understanding spoken or written language, pale skin, frequent urination, irritability, excitability, depression, nervousness, difficulty concentrating, nasal congestion, runny nose… And this is only a partial list!
Other headache bloggers who have responded to the questions are Tracy of Moogle’s Thoughts and Angel from Give Me Something to Sing About.