MY PERSONAL JOURNEY: Hospital, Surgery, and Hypersomnia
I want to share my story because a recent experience has had a profound impact on me. I am still processing it, and I think it is something anyone with hypersomnia needs to think about. I never had. I have had idiopathic hypersomnia (IH) since I was 15 and was finally diagnosed 11 years ago. Since then I have been doing well on medication, although I still have ups and downs. But I can function. Last fall, I experienced severe abdominal pain and spent 12 days in the hospital, diagnosed with diverticulitis, sepsis, and pneumonia. I was very sick. I had emergency surgery and needed a colostomy.
During my stay in the hospital, I was not medicated for the sleep disorder, nor was I given other usual medications. Imagine the impact of being very sick, plus having sleep drunkenness, and being in and out of various states of awareness. The hospital stay became a traumatic event for me. There were times I felt trapped inside my body, unable to communicate. I felt terror and fear because I felt very unsafe. I experienced severe anxiety because I was trying so hard to follow instructions and understand what was going on. Nurses were giving me instructions that I was unable to follow. My friends were concerned because they did not think I understood the instructions for going home. I was overwhelmed learning to care for the colostomy. I was given new medications, which caused insomnia and scrambled my body’s circadian rhythm. Then, to help me sleep, they gave me Ambien, which left me unable to wake up for an entire day. When I came home, I had severe insomnia for months, and my sleep/wake cycle was severely disturbed. I was terrified of having the takedown operation. It took me months to process what had happened.
By the time I saw the colon surgeon for the takedown procedure, I had figured out what had happened. I was able to inform her very clearly of my diagnosis of idiopathic hypersomnia, and how I function when I am not medicated. I told all my friends about my sleep disorder. Things went much better for the second surgery. I was back on my medication the day after surgery. The problem I am having this time is that I have realized that I am hypersensitive to opioid painkillers. One side effect is insomnia, so I am struggling to get back on an even keel. But overall the experience was much better.
Doctors in the hospital do not understand hypersomnia, nor do they understand the impact of the treatments they are providing on a person with hypersomnia. And who plans to spend 12 days in the hospital for an emergency visit that is out of their control?
I have no idea of where to go with this, but sharing my story with other people who understand hypersomnia seems like a good place to start.
Karen B – MN, USA