My FND Journey | Chapter 2
On August 18, 2026, I walked into the hospital expecting to have a pacemaker implanted, spend a little time recovering, and finally put the fear of complete heart block behind me. After spending five days worrying about whether something might happen to my heart before surgery, I was ready to get it over with.
I knew there would be some soreness afterward. I knew I would have restrictions while I healed. But I certainly wasn’t expecting everything that followed. What I thought would be a fairly straightforward procedure turned into two hospital stays, complications I never anticipated, and the beginning of neurological symptoms I couldn’t explain.
Surgery Day
Checking into the hospital went smoothly.
Before surgery, the doctor gave me medication to help me relax. Apparently, it worked pretty well, but during surgery was different. Bill later told me the doctor said they had to give me additional medication because I wouldn’t quit talking. Imagine that! Me talking too much!
The procedure itself seemed to go well, and when I woke up, I expected to begin recovering and eventually head home, but I was in pain. A lot of pain! I kept telling the medical staff how much I was hurting. I think they may have given me pain medication while I was in recovery, but I honestly don’t remember.
At that point, I still thought I’d be going home that day.
A Trip to the Restroom Changed Everything
Just before I was supposed to be discharged, I asked to use the restroom. I got up, took a few steps, and immediately felt sick, almost like I was going to pass out. Apparently, my blood pressure had dropped dramatically. Well, that changed the plans for the day.
Instead of going home, I was admitted to the hospital for observation. I figured they would watch me overnight, make sure everything was okay, and send me home the next morning. Unfortunately, that wasn’t how things worked out.
The Pain That Wouldn’t Go Away
I continued complaining about the pain. The nurses gave me morphine several times, but the relief didn’t seem to last very long. The following day, they switched my medication to Norco. That didn’t go particularly well either. The Norco made me nauseated, so then I needed medication for the nausea. Through all of this, I was still telling them I was in pain.
Eventually, they ordered an X-ray. I was told everything looked fine.
But I knew how I felt, and something still wasn’t right. At one point in the evening, the nurse called a rapid response on me. I’m not exactly sure what prompted her to make that call. My understanding was that she may have been concerned the pain was related to my heart, especially since I’d just had pacemaker surgery. Bill had already went home and I called him back because If I was going to die, I didn’t want to be alone.
Two days after surgery, another X-ray was performed. That’s when they discovered I had a partially collapsed lung that hadn’t been identified earlier. After repeatedly telling everyone how much pain I was in, there was finally an explanation for at least some of it. Another reason to listen to your body!
The Oxygen Mask and a Conversation I Won’t Forget
Once the partially collapsed lung was discovered, the doctor caring for me on that floor ordered a non rebreather oxygen mask. I spent most of the day wearing it, still feeling miserable. Later that evening, a respiratory therapist came into our room to care for the patient sharing my room. While she was there, she overheard a conversation between my doctor and nurse. She came over to me and began disconnecting the non-rebreather. I remember her saying she didn’t mean to overstep her boundaries, but she believed the equipment had been connected incorrectly and that I was breathing in carbon dioxide.
What happened next was something I certainly wasn’t expecting.
The respiratory therapist and the other medical staff went back and forth, disagreeing about the situation right there in my room. Eventually, the respiratory therapist stepped out and made some phone calls. The doctor who had originally ordered the non-rebreather then agreed to change my oxygen setup to what the respiratory therapist had recommended.
I can’t tell you exactly what was wrong with the setup from a medical standpoint. I can only share what I heard and what happened in my hospital room, but after everything else I’d been through, it was one more unsettling experience.
Finally Going Home, But Something Was Different
By Friday afternoon, August 21, I was finally discharged. I was ready to get out of the hospital, go home, and start recovering, but something strange had begun happening.
Every once in a while, I would make a couple of unusual little breathing huffs. The best way I can describe them is the way a child sometimes catches their breath after crying really hard. A couple of quick, involuntary huffs inward. At first, they were occasional. I didn’t know what to think about them. I had just undergone surgery, experienced a partially collapsed lung, and spent several days in the hospital. I hoped whatever was happening would settle down as I recovered, but it didn’t.
When the Symptoms Began Changing
The following week, I had a follow up appointment with my cardiologist. I brought the strange breathing movements to his attention. He had my pacemaker checked, and I was told the pacemaker wasn’t causing them and he left it at that.
As the week went on, the symptoms gradually became worse. What started as occasional breathing huffs began turning into involuntary facial movements, then my mouth started opening extremely wide. I had absolutely no control over it.
I wasn’t doing it intentionally. I couldn’t simply decide to stop. Imagine your face making movements that you aren’t telling it to make. Your mouth opening so wide, without being able to control what it’s doing. I didn’t understand what was happening.
I actually have a video from when these symptoms first started, and I’ve decided to share it because it’s difficult to explain something like this with words alone.
This video shows some of my early involuntary facial movements and breathing symptoms. These movements and sounds were completely beyond my control.
A Weekend Up North That Ended at 3 A.M.
That weekend, Bill and I went up north. We were out eating with friends when the symptoms really started getting worse. I thought I could make it through the night and wait until the following day to head home, but that wasn’t going to happen.
At approximately 3:00 in the morning, we got up and headed back to the hospital. I had no idea that I was about to spend another six days there.
Six More Days Searching for Answers
Once I was admitted, the doctors started trying to figure out what was happening. They checked my pacemaker repeatedly. They wanted to make sure the device was functioning properly and that these symptoms weren’t related to my heart.
Eventually, I was told they believed I was experiencing Dystonia, possibly caused by a reaction to medication. Dystonia is a condition involving involuntary muscle contractions that can cause unusual movements or postures. My symptoms just weren’t going away and I still didn’t understand what was happening to me.
I had gone into the hospital to have a heart problem addressed. Now I was experiencing movements I couldn’t control, and no one seemed to have a clear explanation for why they were continuing.
Finding a Specialist Was Left Up to Me
Before I was discharged, a neurologist suggested that I find a doctor who treated functional movement disorder. That was a term I had never heard before. I wasn’t given a specialist’s name or a clear plan for what to do next. I was essentially told to start calling around and find someone who treated it. The hospital did provide me with the name of one neurologist, but that doctor didn’t specialize in functional movement disorders.
So there I was, heading home after another six days in the hospital. I had a new pacemaker, neurological symptoms that weren’t going away, and a medical term I didn’t understand and now I needed to figure out who could help me
This Wasn’t the Recovery I Had Imagined
When I walked into the hospital on August 18, I thought the hardest part would be getting through pacemaker surgery. Instead, I experienced a dramatic drop in blood pressure, pain that wasn’t being relieved, a partially collapsed lung, a concerning experience involving my oxygen equipment, and the beginning of movements I couldn’t control.
I didn’t know what Functional Neurological Disorder was. I didn’t know what treatment might look like, and I certainly didn’t know how much my life was about to change. All I knew was that something was happening to my body, I couldn’t control it, and I needed answers.
Coming Next: Chapter 3 | Searching for Answers: My Introduction to Functional Neurological Disorder
This article shares my personal medical experience. The events and symptoms described are based on my recollection and what I was told by medical professionals. The fact that my neurological symptoms appeared after surgery does not establish that the surgery caused them. This story is intended to share my experience and raise awareness, not provide medical advice.
Leave a Reply