Oh, for a Good Night’s Sleep: Sleepwalking with Huntington | Sleep problems
Sleep has recently been a big concern for my wife, Jill, and me.
After recently having a meltdown realizing she was going to die young – sadly Jill is gene positive for Huntington’s disease (HD) – she realized her sleeping habits were atrocious as she only slept around two hours per night at most for a few weeks.
Normally, Jill sleeps five to six hours a night. However, since she was 20, one of her main problems has been falling asleep. Even when life is not stressful, it is difficult for him to turn off his brain. It’s not uncommon for her to fall asleep at 2 or 3 a.m., only to wake up three hours later, try to go back to sleep (and fail), then finally go back to sleep – only to wake up an hour later. The joke in the family is that she slept so much during her teenage years that she reached her life quota.
I suggested she call her doctor to find a solution, which she did, getting a virtual appointment for the next day.
Her neurologist said not sleeping is another symptom of HD. He suggested medications she could try, and Jill opted for mirtazapine (known by its brand name Remeron), a depression medication that causes drowsiness.
He sent the prescription to the pharmacy. When she came back from the pharmacy, she put it on the counter, where it stayed for three days.
I did not understand why she hesitated to take them. So I asked him. She said she feared sleepwalking. She’s done it all her life, and it’s really scary. I’ve had conversations with her in which I thought she was awake – but she wasn’t.
She said she feared injury, such as falling down stairs, while sleepwalking. I told her that I would keep an eye on her for the next two nights so she could sleep well.
After the first night, Jill said the meds didn’t make her tired, but when she woke up she felt like she was partly drunk and hungover at the same time. She wasn’t happy with the side effects, but said she would keep trying to figure out what worked for her.
She took the drug for a week and did not experience the desired result. She stayed up late and ended up falling asleep early in the morning. But then she felt groggy during the day.
She spoke with her neurologist about her problems, and he suggested she try one more time. So she did.
The next morning, I spoke to her before leaving for work, telling her that I was going to pick some vegetables on my way home. Later that morning, I called her from work to speak to her, and she told me that she had gone to the store to pick up some vegetables.
I laughed, thinking she was joking. She was not. I asked her why she bought them when I was going to. That way she didn’t have to go to the store, because I don’t like her driving when she’s not sleeping well.
I thought back to her talking in her sleep in the past, and the realization hit me. That’s what happened this morning, and she couldn’t remember anything we talked about. She confirmed this by saying she had no recollection of talking to us that morning.
I asked her if she would take the drugs again. “No,” she said. They weren’t helping, and her fears of what might happen were too great for her to keep trying.
I hope one day Jill won’t have trouble sleeping. But if she ever decides to take medication again for her lack of sleep, I’ll be happy to give up my sleep to watch her through the night so she’s safe.
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