Sleep escapes many people who suffer from Huntington’s disease. A few years ago, Mom only needed a little Lexapro and Lorazepam to take the edge off of her depression and anxiety and allow her to have a full night’s rest. Eventually, Mom’s neurologist dropped the Lexapro and added Neurontin and Trazodone in low doses to her daily mix. About eight months ago, Mom’s sleep patterns began to shift. She started staying awake hour after hour.
At first, these late nights didn’t affect Mom’s overall behavior or personality. She spent the day after her insomnia attacks actually awake. While David and I endured sleep deprivation, Mom seemed to carry out her normal daily routine after a sleepless night. The occasional wakeful night slowly shifted into a pattern of Mom staying awake four or five nights out of seven. A quick call to one of her doctors meant a change in the dose of one of the medications. Life went on.
In January, the neurologist adjusted Mom’s Trazodone for the second time. Then a couple of months later we upped her night dosage to 100 mg. During the last couple of weeks, insomnia invaded Mom’s bedroom yet again. With these last bouts of sleeplessness have come changes in Mom’s personality. The longer she goes without sleep, the meaner she becomes. Her tongue, often tied by HD during the day, loosens during these endless nights. Sometimes her anger and frustration brings along paranoia. These changes frighten me because I know her disease wins on these nights.
After a bad round of insomnia last week, I searched different HD sites to compare Mom’s experiences with other’s fighting this disease. It didn’t take me long to realize that wakefulness and restlessness plagues almost everyone with HD. Then I stumbled upon references to using melatonin. I gave Mom’s neurologist yet another call to ask about this OTC option.
“I was going to suggest melatonin to you,” he said when he returned my call. “I’m going to let you experiment with the dosage you use. It’ll take a couple of weeks for you to find the right amount, but call me if she doesn’t respond at all. Actually, call me in two weeks no matter what.”
Running errands at The Forum, I swung by Target to see if the store carried melatonin. Sure enough—one single bottle remained on the shelf for a 5 mg dosage.
The first night Mom had no change in her sleep. After that, she zonked out and stayed asleep all night long. She also took naps during the first few days, something she rarely does unless she’s using Benadryl. David commented first on the fact that Mom didn’t recognize him the other morning. He’s recently shaved off his beard and mustache, so we decided her confusion wasn’t anything to worry about.
The nightmare began suddenly today, five days into taking the melatonin. Mom woke up after a full night of sleep with more energy than I’ve seen with her in days. She fed herself eggs and later asked for pancakes, which she also managed to eat on her own. She chatted with me about the episode of The Dick Van Dyke Show since this installment showcased both Van Dyke brothers, who went to school with Mom. Then after lunch Mom’s attitude suddenly changed as I helped her in the bathroom. She became suddenly angry and told me I was “useless.” Within minutes, she said she didn’t know who I was and began begging me to take her “home.” She asked for the “other orderly” because she didn’t know or trust me.
As soon as I had her settled for a few minutes, I conducted an online search and learned that some people get confused if their melatonin levels are too high. Once David gets home, I’ll run to Walgreens to pick up a lower dosage. We’ll start the slow process of discovering the level that will help her sleep all night while still keeping her lucid. I understand now why her neurologist said we may have to make adjustments for a couple of weeks. I just hope that this nightmare ends soon.
Copyright 2012 Elizabeth Abrams Chapman