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.
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
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