October 2018

When Your Doctors Don’t Listen

I admit that until this year I took my health for granted.

It was like the couch in the living room: Comforting. Constant. Perfectly preserved. Barely noticed. Sure, I had the usual flu and cancer-screening scares. But there my health was every day: solid. Reliable. Unchanged.

Then last February I had a pain in my lower abdomen that wouldn’t ease up. Jeff piled me into the car late Sunday night, and by 3 AM I was on the operating table having my appendix removed. (This was, ironically, two days before Covey launched.) I had never had emergency surgery, and I didn’t realize how much I had overworked myself being an entrepreneur. The likely explanation for the appendicitis was the blood-pressure-lowering medication verapamil that I took as a prophylactic to prevent my cluster headaches (which had become chronic after menopause). One of verapamil’s side effects is constipation. After the operation, the surgeon was so concerned about my gut that he rushed me to a gastroenterologist.

Now, I’m not a shy person and I have no issue with speaking up about difficult subjects (as you can see here). I had told both my GP and my headache specialist that though I was headache free, my waistline was growing. The GP offered over-the-counter solutions which I used here and there but not frequently enough because I feared developing a dependency. I honestly thought I was gaining weight because of age.

So after the operation, I asked my headache specialist if there was a new prophylactic with fewer side effects than verapamil. She put me on topiramate.

After a week I called to tell her topiramate was waaaaay worse than verapamil. I was so foggy I couldn’t edit. I could barely speak. The prophylactic effect had not kicked in, and I was living with an excruciating headache from 1-4 AM every night and now something new — waking up crying from depression. The drug had also altered my sense of smell so that a cloying odor followed me everywhere, making me constantly nauseous. “This isn’t working,” I said.

“Hang on,” she said. “We’ll switch you to a slow-release version of the drug with fewer side effects.”

A week later I went to see her. “I’m so lethargic that I can’t walk up the stairs. The headache pain is, on a scale of 1-10, a level 15, and I’m not myself. It’s been eight weeks of nightly headaches and zero sleep. I need some other kind of pain relief.”

Cluster headaches, which feel like the brain-freeze you get from drinking something too cold but multiplied by one hundred, are particularly evil. They hit just as you slip into REM, meaning you become terrified of sleep. Unless you’re on a preventative, you have to wait till they hit, treat them with a special kind of migraine drug called a triptan, and wait for the pain to subside, usually within an hour. Unfortunately, triptans don’t work pre-headache. So I begged for a narcotic that might let me sleep through the night a few times a week while we waited for the topiramate to kick in. Her solution: Go to bed earlier so I could get more solid hours after being awakened.

A week later I got her nurse practitioner on the phone and told her the pain and lack of sleep was driving me to suicidal thoughts. “All part of the syndrome,” she said, as if she was checking a box. “And you can’t go back to the verapamil. It gave you appendicitis.”

I paused, nearly crying, as I watched the safe shoreline of verapamil fade from my sight. “I have no appendix!” I shouted. “The headaches are driving me into madness. I am not myself. We are going back to the verapamil!”

That cri de coeur finally got her assent and we moved back to the verapamil, which kicked in after two weeks. My headaches are in remission, and I manage my gut as needed. I snuck into the Columbia medical library and have made myself an MD on my syndrome. Yes, suicidal ideation is cited in studies on clusters, although it is said that few patients act on it. But that’s not a reason to not be alarmed. I am changing doctors and going to a new clinic in November that has the words “headache” and “pain management” in its title.

I tell you this because I know from editing many magazines that women are often not listened to by the medical profession. I was just shocked that it was female doctors not listening to me!  But it happens. We all have to keep pushing until we have a solution. And if one doctor won’t give you the care you need, it’s time to find a new one. I’ll let you know how my quest goes.

I decided to make the October issue of TheCovey contain a special series of articles on health, which I now know none of us can take for granted. Ever. We start out with Dr. Barb Depree’s wonderful piece about “4 Trends That are Improving Sexuality at Midlife,” plus a fantastic bit of good news on the Alzheimer’s and dementia front from Meg Jordan called “Breakthrough News about Halting & Reversing Mental Decline.” This is followed by an exploration of why every woman over 40 you know is suddenly rushing to get an elective surgery they’d put off (“Breast Reduction Surgery after 40? Yes!”).

I’ve included a comprehensive chart about solutions for constipation in “The Scoop on Your Poop” because, even though no one will talk about the problem openly, every girlfriend who heard my story had to run grab a pencil to write down everything I’d learned.

Don’t miss the other fabulous stories in this issue — from Ines de la Fressange’s wonderful reinvention from model to interior decorator, to Melanie Sheppard’s essay about how buying secret coffees for neighbors taught her daughters lessons about giving, and an upbeat story about “The Women Behind the Women Running in the 2018 Midterms.” It is good news when we can all help each other advance.

Join TheCovey conversation by leaving comments. See you next month.