When symptoms of porphyria mimic mental health struggles
During attacks, I've experienced hallucinations, mood swings, and more
“You can go with them,” I told my husband, Daniel, as I lay in the hospital bed.
“Go where?” he asked.
“Out the window,” I responded.
Considering we were on one of the top floors of the hospital, Daniel was very confused. Anyone would’ve struggled to grasp what was going through my mind at the time.
I was seeking treatment for a porphyria attack at Wake Forest Baptist Medical Center in Winston-Salem, North Carolina, when I experienced hallucinations for the first time.
Daniel was sitting in the chair beside me and we were watching “Chicago P.D.” when I saw five men walk in front of my bed and toward the window to my right. They opened it and stepped out onto the ledge and into a room. That’s when I said, “You can go with them.” It hadn’t dawned on me that what I was seeing wasn’t real.
Although I suffer from anxiety, depression, mild hallucinations, and mood swings, most of my medical team understands that these are symptoms of porphyria. Unfortunately, other providers have diagnosed me as having schizophrenia with psychotic tendencies when I was actually experiencing a porphyria attack.
This misdiagnosis was part of why I wanted to work as a columnist for Porphyria News. It is important that healthcare professionals become more familiar with porphyria and its symptoms and that patients and advocates know they’re not alone.
I mentioned in my first column that almost all of the women on my mom’s side of the family have been diagnosed with acute intermittent porphyria. Many of them also struggle with anxiety, depression, and mood swings. My mom, Donna Bullman, often says, “Porphyria doesn’t just affect you physically; it affects you mentally, too,” and she’s correct.
Keep in mind that I have been diagnosed with anxiety and depression; however, I truly believe that porphyria is the culprit for most of my behavior. The American Porphyria Foundation’s Purple Light Blog explains that porphyria can mimic some mental illnesses, as well as the symptoms associated with them. It begs the question: Which came first, the chicken or the egg?
Note: Porphyria 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 Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.
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Comments
Lynn
I was in the hospital after weeks of pain and other symptoms when my British doctor put two and two together and had me tested for porphyria. The "aha" moment for her was when I had hallucinations. Luckily, she had experience with porphyria when she practiced medicine in England. She had not seen it in the States, but knowing I had British heritage, and hearing stories about my mother's lifelong suffering, she helped the whole family by honing in on the acute intermittent porphyria that was passed down genetically from my British grandfather's family. Thank goodness she was my doctor at the time and a correct diagnosis was found. That was over 20 years ago, and the rest, as they say, is history!
Mrs Ellen Nutley
This is so interesting and answers some questions for me