The story of Alison
What was supposed to be a routine cleaning at the dentist led to being diagnosed with two chronic diseases.
Between checking for cavities and reminding me to floss more, my hygienist took my blood pressure. This was a new practice, and actually the only time this occurred there. We chatted about our horses as the finger monitor did its magic. After a few seconds the results loaded: my blood pressure was unusually low. This has been the status for my whole life, so I did not think much of it. My dental team was slightly concerned as I was only 21. They recommended I see my primary care doctor for a checkup. It was time for my annual physical, anyway, so I noted the advice. Everything was going okay until March 2020 when COVID struck hardest.
This was an important year for me before the pandemic hit. It was my senior year of college. I was in the honors program, interning, working, and taking care of my horse. All of these activities consumed the vast majority of my time. When I started having painful headaches daily, I attributed them to stress. The headaches actually began in 2019. They would come here and there, but inconsistently. It was not until 2020 did they become daily. Once COVID shutdowns caused me to lose my internship, job, and job offers upon graduation, my headaches did not cease. I still did not think anything was wrong. I was more stressed now. “This is normal,” I convinced myself. Throbbing headaches on the same corner of my head attacking me at the same time every day was routine now. Wasn’t it ordinary for everyone?
After almost one year of daily brain aching, I advised my doctor about my condition on a telehealth call. I explained how at three in the afternoon I needed to brace myself for the headache that was about to strike. The pain was located in the left front quadrant of my head. Pressure, zapping, ear pain which altered my hearing, and piercing were the usual symptoms. The primary care provider diagnosed me with migraine. I was left unsatisfied with that explanation. Thoughts included “Yes, but, why? What else is going on? Am I explaining this correctly?” An antiseizure drug was prescribed. I was informed there was not a medication which was able to solely treat migraines. They could only be treated with medication meant to assist with other neurological conditions. Since it was also time for my physical blood work was also assigned. I must admit there was one part of the call which excited me. As an avid fan of iced coffee, being told to take caffeine was the bright side to the sharp pain behind my left eye.
I continued to discuss my symptoms with my friends and family. Finding a supportive community was valuable to me at this time. While most people were caring, there were some who doubted my explanations. “Stop being dramatic” and “just get over it” were phrases which caused as much emotional pain as my brain caused physical pain. Couldn’t they see I’m taking the necessary steps to try to get over it, to cease my pain? One statement stood out above the others: it’s all in your head. I usually crafted a sarcastic response: “Well considering its my brain, I hope its in my head.”
Approximately a week after the call with my doctor my blood results were in. Cholesterol levels were good, sugar level was fine, however creatinine was high. Referrals to a nephrologist and a neurologist were given. Each doctor had a waitlist which was months long. After three months of waiting, it was time to speak to the neurologist. She is a very comforting doctor. She is approachable, an active listener, and a diligent note taker. My excessive nerves were eased when she apologized for my pain. This pain was not her fault. Seeing her take responsibility for my still mysterious condition confirmed that I was in the right hands. More labs were ordered along with a MRI and MRA. Three more prescriptions were added to my routine as well. What seemed like an epiphany was short lived once insurance stepped in.
One of the tablets was to be taken as needed. A 10-tablet supply would last a few weeks. The problem was these 10 tablets cost thousands of dollars. This was a new drug without a generic. The doctor and I were in constant contact with my health insurance company to have it covered. At this time I was working in a customer service call center. Between calls from customers placing orders I would be calling the insurance company for updates. There was one instance where I cried at work over this. I wondered how can a company tell me I’m not in enough pain? At the same time the MRI and MRA were not yet approved. I was beginning to feel hopeless. Even in the year before seeking medical intervention did I feel that way. I was finally understood by someone who knew what I was talking about only to have that disregarded by strangers. At least the MRI was approved a week later.
Sure, I received feedback about getting a MRI from those who have also had them. I was warned to brace myself if I was claustrophobic. Luckily this was not a priority. The ear pain explained earlier was exacerbated by the irregular banging. Headphones with music would not block the sound enough. The MRI was ten minutes long. As the white table slid out of the machine into the dim room I was in the second most pain I’ve ever been in. The MRA was completed the following weekend. My ears adjusted better to this scan, but not perfectly.
The results came back quickly. On October 15, 2020 I was officially diagnosed with cluster headaches. These are among the most painful headaches and migraines someone can experience. Not much is known about the condition. The trigeminal nerve is believed to be the impacted nerve causing such pain. This diagnosis was much more acceptable than what was stated during the first call. Endless questions about my cluster headaches exist. Research is actively being done to learn more about this diagnosis. I am optimistic that more information will arrive within the next few years. Since it is a rare disease I have spent the last year educating others about it. Two weeks after this diagnosis I received another one.
Between brain scans I attended the appointment with the nephrologist. After reviewing the extensive blood panel he ordered, my kidney doctor diagnosed me with chronic kidney disease on October 28, 2020. He explained how over the counter medications were most likely causing the high creatinine. I admit aspirin was my best friend prior to receiving the correct medication. I am extremely lucky to say my kidneys have healed since this appointment as I am on the correct medication currently. Speaking of medication, my 10 tablets finally approved by insurance – after a peer-to-peer review and the application of a manufacturer’s coupon. Those pills have treated many cluster headache episodes which would have been pitiful if left alone. The antiseizure medication I was on was deleted after meeting with the two doctors. It was not aiding my brain. It was impairing my kidneys. It was making my brain worse. My cognitive function was decreasing daily. Losing my memory because of a pill was one of the most frightening things I’ve experienced in this cluster headache journey.
As I write this it has been three years of pain. It is almost two years since receiving my cluster headache diagnosis. There are good days, and there are bad days. Monthly injections have been switched due to side effects, new symptoms manifest, and brain zaps are still regular. My ears still ache regularly, also. I’ve been accustomed to walking on the left side of someone so my good ear can hear as much of the conversation as possible. The neurologist who diagnosed me is still my current neurologist. She has been my best ally during this journey. Being diagnosed with a rare neurological condition as a young adult has shifted my perspective on life. I quit my call center job and entered the special education field. Instead of worrying about bad news I surround myself with positivity as much as possible. I’ve tried things for the first time which I would have been too nervous to try if I was still hiding in pain. My story is still unfolding. I will continue to share my story as much as I can. Celebrating Rare Disease Day is an act of unity. An invisible condition is not invalid. The best advice I ever received was “What you take care of will take care of you.” Seeking help was an act of self-care. Now I see the rewards of that scary first step daily.