My Health Journey

I keep mentioning the dreaded year 2023 and that I was sick and hurt. I want to tell my abridged story; the full one would be too long, and I plan to write a book one day! To understand what happened, I have to explain what life was like before the chaos. This is my experience, and others have different experiences. This isn’t medical advice!

Before the storm

Before October 2022, I was on medication for my PTSD and subsequent depression and anxiety. It was working well enough, but I wanted more out of life, and Lexapro was just not that effective for me. I signed up to be alerted of any clinical trials for PTSD in the area, and in mid-September 2022, I got the notification that I could apply to one nearby. So I did, and I was accepted!

The clinical trials

There were a few problems with the clinical trials. First, they needed a baseline, which meant I couldn’t take my medication for a month. By the end of October, I was in a bad place mentally. I started the trial medications, knowing full well that there was a chance I would be on a placebo. I felt better at first, but as the trial went on, I got worse and worse mentally. I was so depressed that I wasn’t getting out of bed unless it was necessary, and all I ate was chicken nuggets and french fries. I gained weight, which made me feel bad about myself, too. Things kept getting worse and worse. In early March, three months after the clinical trial ended, I began the process of switching to a new medication, Wellbutrin, which has been my mental savior.

The tummy problems start

Going back a bit to February, I started feeling sick. After a really stressful event, I threw up from the panic attack I had. After that, I started having trouble eating. It started slowly, only throwing up one meal a day. But as the weeks went on, I could eat less and less. By mid-March, I had lost 35 pounds from being unable to keep down food. When it progressed to throwing up even water, I finally went to the ER, where they hydrated me and sent me home. A few days later, I returned to the ER and was admitted for the first time.

First hospitalizations

My first hospitalization was only a week, and they thought it might be my gallbladder, so they removed it. That wasn’t it. I went home, and three days later, Mom decided it was time to go to a Boston hospital. I was admitted to said Boston hospital for 17 days. They didn’t find the cause, but they gave me a bunch of medication that helped me be able to hold down food. I felt better and ate really well for two weeks.

medication problems

At the Boston Pride parade, two weeks after leaving the Boston hospital, I had my first seizure. They told me to stop one of the medications, so I did. Without that medication, I began getting sick again. I saw a neurologist who said he thought it was the Wellbutrin that caused the seizure and told me to take the medication the ER doctor told me not to take again. Two weeks after I restarted the medication, I had my second seizure. It was very obvious that it was the medication, not the Wellbutrin, causing the problem. Here’s the kicker: when I started retaking that medication, it no longer worked.

the second hospitalizations

I was admitted to a local hospital five days after the second seizure. I was there for five days and, to no one’s surprise, they couldn’t find anything wrong. I was discharged. I shouldn’t have been, but I was so done with hospitals that I hid that I was still sick. I got sick again as soon as I got home. My hands and feet started to feel tingly in the local hospital, but I thought it was nothing. The tingles turned to manageable pain, which turned to unmanageable pain. I landed back in the Boston hospital again, this time for 21 days.

the tubes

By the time I was discharged from the hospital to go to rehab for the newly developed neuropathy in my hands and feet, I was FINALLY given a feeding tube. We had to fight for this, but it was August, and I had lost 85 pounds since February. Thankfully, my dietician was able to convince the GI team to do the feeding tube even though they did not want to. There is still no answer to the cause of the vomiting.

The neuropathy

Rehab was fine. It was hard, but I finally got nutrients through the feeding tube. I was in inpatient rehab for five days. The pain started to go away, and I was hopeful. Andres and I got married in October, and I met my goal of being able to walk “down the aisle” without a walker or cane; thanks to Mom and Dad for holding me up while they gave me away. Things were looking up. I was making progress; I hadn’t thrown up since the feeding tube was placed. I got too confident in my progress, though. I love to dance, and I fell in my house while dancing. The time in hospital beds caused drop foot, and my toes were numb. I kicked an area rug and didn’t feel it. I fell hard and broke my ankle. I was devastated. I needed surgery, and recovery was going to take a long time. 

Conflicts with doctors

Before December 2023, I had no good doctor besides my PCP. That year was filled with accusations, gaslighting, and negligence. My original nutritionist suggested a feeding tube during my first Boston stay, which should have been placed then. There were a lot of bad encounters with doctors, but my nurses were all wonderful; you can read about those when I eventually write a book! Because the GI team thought that a pile of medication was the answer, I developed neuropathy, was ridiculously weak and confused, and began to lose hair. 

returning to normal

I have made a lot of progress, and life is starting to feel “normal” again. I’m being more careful and looking forward to returning to dance. I’m a bionic woman with a plate and eight screws in my ankle, but it doesn’t bother me much, and the feeding tube was removed on May 1!

conclusion?

For those wondering, I never received an answer on the cause of the illness. From our research, my mom helped me come up with the most likely explanation. The theory is that my Vagus nerve, the nerve that, among other things, connects the brain to the gut, was significantly weakened due to years of PTSD and bad mental health made worse by the clinical trial. When the extremely stressful event happened in February, and I had a panic attack, my Vagus nerve broke or got badly damaged. This disrupted the connection between my brain and my gut. This started the vomiting. From there, since I couldn’t keep food down, the microbiome in my gut was deprived of nutrients and good bacteria. This is why we think the feeding tube helped. It made a happy microbiome and gave me the needed nutrients to heal. I haven’t thrown up since getting the feeding tube in September 2023. Below are two photos, one in February 2023 and the other in October 2023. I had gained some weight back, but it shows how much I lost from literally being unable to keep food down.