Oh, to Get a Good Night’s Sleep: Sleepwalking With Huntington’s

Sleep has lately been a great concern for my wife, Jill, and me.

After she recently had a meltdown about realizing she’s going to die young — sadly, Jill is gene-positive for Huntington’s disease (HD) — she realized her sleep patterns were atrocious, as she’d been getting only about two hours a night at most for a couple of weeks.

Normally, Jill gets five to six hours of sleep a night. However, ever since her 20s, one of her major issues is actually going to sleep. Even when life isn’t stressful, it’s difficult for her to turn off her brain. It’s not uncommon for her to conk out at 2 or 3 a.m., only to wake up three hours later, try go go back to sleep (and fail), and then finally go back to sleep — only to wake up an hour later. The joke in the family is that she slept so much in her teen years that she’s met her lifetime quota.

I suggested she call her doctor to figure out a solution, which she did, getting a virtual appointment for the next day.

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Her neurologist said that not sleeping is another symptom of HD. He suggested medications she could try, and Jill settled on mirtazapine (known by its brand name Remeron), a depression medication that causes drowsiness.

He sent the prescription to the pharmacy. When she came home from the drugstore, she put it on the counter, where it sat for three days.

Unopened.

I didn’t understand why she would hesitate to take them. So I asked her. She said she was worried about sleepwalking. She’s done it her whole life, and it’s really scary. I’ve carried on conversations with her in which I thought she was awake — but she actually wasn’t.

She said she was concerned about getting hurt, such as falling down the stairs, while sleepwalking. I told her I would keep an eye on her the next couple of nights so she could sleep with no worries.

After the first night, Jill said the medication didn’t make her tired, but when she woke up, she felt like she was partly drunk and hungover at the same time. She was not happy about the side effects, but said she would keep trying to figure out what works for her.

She took the medication for a week and didn’t experience the desired outcome. She stayed up late and eventually fell asleep in the early morning hours. But then she felt groggy during the day.

She spoke with her neurologist about her issues, and he suggested she try once more. So she did.

The next morning, I talked to her before I left for work, telling her I was going to pick up some vegetables on my way home. Later that morning, I called her from work to talk to her, and she told me she had gone to the store to pick up some vegetables.

I laughed, thinking she was joking. She wasn’t. I asked her why she bought them when I was going to do it. 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 flashed back to her talking in her sleep in the past, and the realization hit me. That’s what had happened this morning, and she didn’t remember anything we talked about. She confirmed this by saying she had no memory of us talking that morning.

I asked her if she would be taking the meds again. “No,” she said. They weren’t helping, and her fears of what could happen were too big for her to keep trying.

I’m hoping that one day Jill won’t have trouble sleeping. But if she ever decides to take medications again for her lack of sleep, I’ll be happy to give up my sleep to watch her all night so she’s safe.

Note: Huntington’s Disease 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 Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.