I had always glossed over the details about sleep problems and HD when reading over the years because it seemed like small potatoes compared to the other, more blatantly hellish symptoms.
But that was before I had beaten every other symptom back as best as I could with cognitive therapy and handfuls of pills each day— a move that has positioned my increasing sleep difficulties as the next symptom I plan to tackle.
Here’s an interesting excerpt about sleep and HD from the HOPES website:
“Because of the many detrimental effects of sleep deprivation on human health, scientists believe that the sleep disturbances associated with HD can exacerbate the disease. Indeed, many of the symptoms of sleep disorders are the same as the symptoms of Huntington’s disease, including the loss of motor control, memory problems, mood changes, and impaired cognitive function. Thus, disturbed sleep may be one of the mechanisms through which the behavioral, cognitive, and motor problems associated with HD develop. It is even possible that sleep deprivation is primarily responsible for some of the symptoms of HD, a hypothesis which remains to be tested. This raises the interesting possibility that treating sleep problems can improve the lives of those with HD.”
These are some of the problems I have been having, in addition to sleep apnea which is unrelated to HD, but deserves mention here for being such a loyal pain in the ass. (I use a bipap machine for that which has to be set at gale force speed to keep my airways open. Invariably, I blow a sinus every few weeks and have to stop using the bipap until it heals enough and then retrain myself to wear it.)
But I digress.
The possibly HD related problems:
Difficulty falling asleep
Difficulty staying asleep
Difficulty going back to sleep after a trip to the bathroom
Wiggling feet in the night
Lack of REM sleep leading to
Dreamless sleep and feeling
Perpetually jet lagged and ultimately
Never feeling rested
I have a new psychiatrist, Dr. Vaishnavi, who is based at the Duke brain tumor center. He is an expert on brains, deteriorating or otherwise. Being his patient has improved my life exponentially.
In fact, the last time I saw him, we had cleared my slate enough to address sleep. He gave me a sleep hygiene list, which I had seen parts of before in the wild but never considered applying the guidelines until now.
One of the things on the list that wasn’t obvious to me was that if I was having trouble sleeping, I need to get up, go to another room, do something non-electronic and boring, like read, until I get sleepy. Then return to bed and try again. I am to repeat this several times during the night until my brain associates being in bed with the act of sleeping.
Along the same lines, I am not supposed to <gasp> watch TV in bed anymore because my brain will associate the bed with watching TV and not sleeping.
Several of my friends with HD take melatonin before bedtime, something I had been avoiding because I take clonazapam at night. My doctor assured me that it was OK to take both, so I took a melatonin last night and woke up at 5:45 a.m. ready to start the day. Usually my husband has to wake me up in the morning: Much later and with persistence.
I have read and been told by my friends that people with HD do not produce melatonin properly or sufficiently and after the rest I got last night, I am inclined to agree.
It feels like something that was missing has been given back to me.
I am going to start looking forward to bedtime instead of dreading it and I am sure that will improve the big picture as well.