As we prepare to say farewell to a tough, bizarre year, I’m reflecting on what my 2020 brought me while looking forward to a hopeful 2021.
So what did my 2020 look like?
The new decade started with a new doctor on my quest to figure out my headaches: a neuro-ophthalmologist. He brought me full circle with a diagnosis, calling my headaches migraines instead of tension headaches or cervicogenic headaches that I’d been trying to treat muscularly for the past several months. He prescribed different meds than those I had tried last year with my primary care physician. I bought an inversion table and discovered it temporarily relieved my neck pain. I did Dry January and started swimming, losing 10 pounds by the end of the month. Still suffering from headaches almost daily.
In February, my boyfriend and I booked a romantic getaway to Curaçao in April when the kids would be with their father for Spring Break. We celebrated my son’s 16th birthday at a paintball park, having no idea it would be the last mask-less gathering we’d attend for a long time. At my gynecologist check up I asked if hormonal changes from my hysterectomy could be causing my headaches. She said it’s not likely, but I kept it in the back of my mind that maybe I should try hormone tests. I had another brain MRI. Still having headaches almost daily.
March is when coronavirus started spreading in the U.S., and the world started shutting down. Our governor announced that my kids’ schools were closed for the rest of the school year. That meant no softball season for my tween daughter and no track season for my son. My son aced his first job interview for a summer youth employment program with the city, and I signed my daughter up for summer camp, even though it was questionable if either would happen. My rec center closed so I couldn’t swim. My yoga studio closed so I could only do yoga videos at home. My massage center closed so I couldn’t get massages. My neck pain and headaches became daily and debilitating. I managed to see my rheumatologist for a Raynaud’s syndrome complication before everything shut down and asked if he had any insight into my headaches. He said his best guess was tension headaches or migraines. My boyfriend and I celebrated our fifth anniversary with a family date night at home with the kids. By the end of the month, the governor called for stay-at-home orders.
Our trip to Curaçao was canceled in early April. I started running a lot to keep in shape and boost my mental health from coronavirus cabin fever. I finally heard from my neuro-ophthalmologist that I had two white spots on my brain MRI, which can be caused by migraines. He switched up my migraine meds, but they rendered me virtually nonfunctional so I stopped taking the new ones. I had a telehealth appointment with my third neurologist who specializes in sleep and then did an at-home sleep study to test for sleep apnea, which can also cause the white spots. It was inconclusive. Neck pain and headaches were out of control, and I was in nearly constant pain.
The world started gradually opening up again in May. Our governor declared phase one of reopening, and I got my first massage (with a mask) in months. Restaurants opened for outdoor seating so I celebrated my 44th birthday with friends at one of my favorite restaurants. It was the first birthday in six years that I didn’t celebrate with a sky adventure. Our Lumineers concert was canceled. I endured a sleep study in the lab, and while I barely slept, I hoped I would still get answers. I never have headaches while running, so I continued hitting the pavement, logging 115 miles in May. Neck pain and headaches continued daily.
In June, I was diagnosed with moderate sleep apnea, and I started using a CPAP machine. The family reunion with my parents and brother’s family got canceled because of coronavirus, but I still enjoyed a week off from work with a lazy staycation. I got my first haircut since January, and my daughter ended the month by cutting over 10 inches off her hair and donating it to Children with Hair Loss. Headaches, neck pain and exhaustion continued daily.
July showed us what an odd summer coronavirus was causing with the cancellation of my daughter’s camp and my son’s cross country practices and summer job program. The Alanis Morrissette concert we had tickets for and our local 4th of July fireworks also got canceled, but my boyfriend and I were able to take the kids to a park for obstacle courses and ziplining. The city announced that schools would start in September virtually, which bummed us all out. Throughout July I still wasn’t getting any relief from the CPAP, and I struggled to keep it on at night as I woke up with a sore nose and dry mouth. The sleep neurologist said I should be having better results so settings were adjusted on the machine. I saw a new primary care physician, who did nothing but refer me to an allergist and a gastroenterologist. Our hearts broke as we said goodbye to our beloved cat Bandito after making the difficult decision to put him down. Headaches, neck pain and exhaustion continued daily.
In August, after several massages left me sore and nauseated, I decided to take a break and try acupuncture. I had allergy testing, and after 88 sticks, I learned I have mild allergies to dogs, mold, grass, certain trees and down feathers, among others. The allergist said the allergies are bad enough to affect me but not bad enough to require shots or cause my debilitating headaches. She advised me to take Flonase Sensimist, continue the Zyrtec I’ve been taking for years and use the Neti pot twice a day, once right before putting the CPAP on at night. Happy 13th birthday to my daughter! Two teenagers in the house now.
September kicked off with a short family road trip to Shenandoah National Park. It was the perfect getaway before the kids started virtual 8th and 11th grades. I continued going to acupuncture, but I dreaded the sessions and didn’t feel it was helping. I did blood work with a gastroenterologist and tested negative for Celiac disease. My yoga studio opened, and my first classes back proved to me how tight my entire body is and how badly I needed to resume a regular meditation practice. I dyed my hair pink and purple to bring some color into my life. Headaches, neck pain and exhaustion continued daily.
In October I tried a different CPAP mask, but it didn’t help. And because the full face mask was too clunky for a toss-and-turn restless sleeper like me and because it caused the bridge of my nose to be sore, it actually made me sleep worse. After a few weeks I switched back to my original nose mask. I saw my dentist for a routine cleaning, and he diagnosed me with temporomandibular joint dysfunction, or TMD. He claimed my jaw clenching could be causing my headaches and neck pain. I quit going to acupuncture and started using an air purifier in the hopes of alleviating my allergies. At the end of the month I was experiencing severe abdominal pain, and when I went to urgent care, I was told I had diverticulitis. I wrote about my daughter donating her quarantine hair for Your Teen. I also wrote about losing a pet during the pandemic for AARP’s The Girlfriend.
The first day of November I spent several hours in the ER with abdominal pain. After a CT scan, I was told I had a ruptured hemorrhagic ovarian cyst, not diverticulitis. A follow-up with my gynecologist showed the cyst was still there, leaking and relatively large, and I have a smaller cyst on my other ovary. I was put on low dose birth control. (If my headaches are hormonal, the birth control should help.) For weeks I was still experiencing abdominal pain and major fatigue. I worked many hours at the beginning of the month on my annual Veterans Day discounts article for work. Coronavirus cases spiked, and my parents canceled their Thanksgiving visit to visit us. My kids were excited when schools announced they were opening to all students for the first time since March 13, but because of the spikes, the schools said “just kidding” and my kids continued to go to attend virtually. I saw my sleep neurologist for the last time because I requested a referral to a dentist specializing in sleep so I can get an oral device for my sleep apnea/clenching. I was given a doctor’s note attesting to my “CPAP intolerance” and gladly quit using the machine that never helped me.
In December, my son got his driver’s license! I met with a dentist who specializes in sleep apnea and TMD. She said my headaches are definitely caused by clenching and grinding my teeth, combined with sleep apnea. I was optimistic, but when I saw the (shocking) price of her (questionable) treatment plan, I called another dentist and booked his first opening in January. I’m confident I’m on the right track, and hopefully this third dentist can offer me an affordable mouth guard that finally alleviates my pain. My annual endocrinologist appointment confirmed my thyroid levels are fine (and not the cause of my headaches). And since the birth control didn’t help my headaches, I’m assuming my issues aren’t hormonal in nature.
It’s discouraging that not only am I ending yet another year with near daily headaches and neck pain, but that an entire year has passed again with no solutions despite the time, money and energy I feel like I wasted.
I’ve been chasing a diagnosis for two years now. But I’m not giving up. And I know I said this last year, but I’m confident 2021 will be the year of answers.
Happy New Year!