A Letter to My Health Care System About Hypersomnia
BY: Karen Berger – MN-USA
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 to have emergency surgery, and during my stay in the hospital I was not medicated for my sleep disorder.
It has taken me months to unravel and process what happened during my hospital stay in November, 2016. I was inspired to write a letter to the patient advocate of the health system, and the doctors who treated me, describing my hospital experience.
One problem with the first hospital visit was that there was no one to speak up for me when I could not. But even if I had told them, the second problem was that I did not know how IH would express itself during my hospital stay, nor did I know about the problems with drug interactions. This is why I think hospitals need to have a way of flagging patients who appear with a hypersomnia diagnosis.
The following letter is a sample of one written to the hospital patient advocate, sleep doctors, primary doctor, general surgeon, and hospitalists who treated me in the hospital because I felt it is very important for them to know what happened to me after surgery, while in the hospital and during my post-op recovery.
I was hospitalized at XXXXXXXX Hospital from XXXXXXXX to XXXXXXXX, 2016. I had wonderful care while at XXXXXXX. Dr. XXXXXX is my hero for moving away from what I felt to be an unsafe situation, as well as doing an excellent job of saving my life. The nurses cared for me really well, and I will always remember the soothing voice of the nurse when I woke up from surgery.
However, while having major surgery would not be a pleasant experience for anyone, my experience at XXXXXX became emotionally traumatic. I have idiopathic hypersomnia (IH), a sleep disorder that causes “sleep drunkenness,” excessive sleepiness, and varied levels of alertness, as well as anxiety, if not treated. Of course, all these symptoms were present in full force while I was at XXXXXXX, as I was not taking my IH medication. As I reflect upon my experience in the hospital, it was the additional interaction of the hypersomnia with everything else that was going on that turned my experience at XXXXXXX from a very unpleasant one into a traumatic one.
I had never considered how a sleep disorder would affect a hospital stay. While I was in XXXXXX, I was unable to process how it was affecting me. It took me a while after I got home before I understood what had happened. I am pretty sure everyone thought I was just really sick from the sepsis, which I was. I recognize that there was no way for anyone to recognize the presence of the sleep disorder as a separate factor from the infection. But I know how I feel when I am not on my medication, and thus, I was able to recognize the effects of the sleep disorder while in the hospital.
While at XXXXXXX, there were several times that I felt trapped in my body, and totally unable to communicate. I would go for hours in a state of barely being awake, and barely able to think. I was having difficulty processing information; my friends noticed that I was really anxious because I was working so hard trying to understand the surgery and other things that were going on. I was reacting in panic to things that were happening elsewhere because I was not in control, and I was sobbing in my bed because I could not get help or figure out how things worked. I was very agitated because I could not process things well, and I had several tearful conversations with the nurses. I was being given instructions from the nurses, for example, to blow into the incentive spirometer, and I didn’t do it because I could not remember.
Then there were the side effects to the medications I was being given. The first one (to help with hot flashes) caused ocular migraines and insomnia, and then I was given a sleep drug to help me sleep. I could not wake up the next day. Thank goodness that I was able to get off the narcotic medication 2 days after surgery because my sleep doctor later told me that patients with idiopathic hypersomnia should not take a sleeping medication with a narcotic. I was unable to communicate most of this to anybody while I was in the hospital.
I would like to propose a solution to prevent what happened to me from happening to others. Obviously the primary consideration of the hospitalists and surgeons was to save my life, not to worry about my sleep disorder. However, they need to be aware of the presence of this additional disorder when a patient presents themselves for care.
What I would like to propose is this:
- When a patient comes in and has a diagnosis of some kind of hypersomnia, an alert warning is activated.
- Everyone treating a patient with hypersomnia would be informed that until the patient can be back on their medication(s), the symptoms associated with hypersomnia will be fully active.
- Even though the patient presents with another condition(s), special care must be taken with a patient having hypersomnia, knowing that the patient cannot be assumed to be awake, competent, or remember anything until they are back on their medication(s).
- An alert warning that medications may affect someone with a sleep disorder differently than expected with a list of known medications available.
- The patient needs to be assured that the hospital is aware of their hypersomnia diagnosis and they are committed to take care and use precaution until the patient with IH can be back on their medication(s). (I think had I been told that the nurses and doctors recognized that I had a sleep disorder, and that they understood the symptoms, it would have made all the difference in the world).
I know that other patients with hypersomnia will be very grateful if, in the future, their unique needs are recognized as a part of their care while in the hospital. I hope this will be informative and helpful so that a process can be developed for people with hypersomnia while in hospital.