New medications can be a stressful journey into the unknown

We take medication to get better after an illness or to keep us healthy when we have a problematic condition. I’ve never liked taking medicines, but with my atypical hemolytic uremic syndrome (aHUS) and several comorbidities, I have a slew of them that keep me alive. But sometimes, unfortunately, medications can do more harm than good.

Even with a well-known condition, there are usually choices among the treatments; in some cases, the guessing game of picking one can last years. We still haven’t found the correct mix to control my blood pressure, for instance. I take three medications for it, and my blood pressure still averages 160/130 (whereas normal is generally under 120/80).

My hypertension is generally caused by my severe kidney damage from my aHUS. I had no clue how much my life would change after I almost died in September 2020, when I spent nearly two months in organ failure. It’s a miracle I’m alive after that ordeal, and I’m still on the brink of being considered a terminal patient.

My high blood pressure puts me at high risk of a stroke, as well as other health concerns. Because of that, my newest doctor had me try something new a few weeks ago, increasing the dosage every three days. The first three days went smoothly, but when I took two pills for the first time on the fourth day, things went downhill.

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Moving into an emergency

I couldn’t leave work fast enough that day. I’d been freezing and had a horrible migraine that intensified with each step; I also felt dizzy and lightheaded. Something wasn’t right. I told myself I’d done too much at work and just needed to get off my feet and eat and drink something. I put my hands on the steering wheel to back out and saw they were shaking. My migraine was also getting worse. “Focus,” I told myself. “Just get to McDonald’s and eat, and all will be right.”

I don’t remember the drive there. When I got my order, I quickly pushed a french fry in my mouth. It was the perfect fry: crisp, greasy, salty, and hot. But the minute it hit the back of my throat, I could taste bile. Barely getting the car door open in time, I gagged and vomited. That’s when I knew something was really wrong, as I’d only vomited four times in my life. I immediately felt dizzy and disoriented, barely knowing where I was. Panic washed over me as my migraine was now blinding.

I was supposed to meet my friend so together we could pick up our kids from school. I texted my fiancé and friend and told them something was wrong. I asked her to drop my kids off at my house, saying I was going to try to make the five-minute drive there and get to bed. She asked what was wrong, and that simple question opened the floodgates. I further panicked while telling her how I was feeling. Verbalizing my symptoms aloud made me realize how scared I was.

Was I having a stroke? A brain aneurysm? Was I going to die in a McDonald’s parking lot? That sounds dramatic, but since my body is a ticking medical bomb, I have to consider it. My friend’s house was closer to me than my house, so she recommended I head there instead. I called to update my fiancé and made it to my friend’s place in under two minutes.

By this point, I was slurring my speech. When I arrived, I sat in the car to relax while my friend’s husband left to get my fiancé. My lips and tongue were starting to tingle and go numb. Then my left arm. I began shaking uncontrollably, and my muscles tensed and seized every few seconds.

My friend asked if I wanted her to call 911. Yes, absolutely.

Seconds turned to minutes, minutes turned into what seemed like hours. Once I was at the hospital, a barrage of questions began along with bloodwork and multiple other tests. My blood pressure was 198/135. I tried to joke with the nurse, saying with a laugh, “Oh, it’s been way higher than that before, so no big deal.” She couldn’t mask the look of terror on her face.

I was having strokelike symptoms, which of course concerned the staff. But after my tests, thankfully, we learned I hadn’t had a stroke; I’d instead had a severe reaction to the new blood pressure medication. After six hours of IVs of multiple blood pressure medications and 10 doses of Benadryl (diphenhydramine), my blood pressure came down and my other symptoms began to subside.

Medication changes are always stressful; I never know if the new medicine will work, cause a severe reaction, or otherwise make my symptoms worse. But patients with chronic illness can face this possibility all the time.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.