Yawn: Living with ALS and EDS ( excessive daytime sleepiness)
CHARLOTTE, NC: ALS affects several regions of the brain not only causing motor dysfunction but also deteriation in cognitive skills. In patients like myself however, who can tell whether cognitive skills are suffering? I’ve always been goofy. One of the lesser researched aspects of ALS is growing concern about ALS and EDS or excessive daytime sleepiness . Studies in China have shown that ALS and EDS sufferers could merit the necessity of including the condition as a “severe complication of ALS.”
ALS and EDS
Recent evidence suggests that nearly half of ALS patients suffer with cognitive and/or behavioral difficulties as well as sleep disturbances. EDS has long been related to diseases such as Alzheimer’s and Parkinson’s but it has been ignored in the study of ALS.
In a research project in Beijing, 121 patients (71 men and 50 women) with an average age of 53 was undertaken to determine evidence of sleep disorders including cognition, behavior, depression and anxiety.
The findings showed that ALS patients had considerably higher instances of EDS at 26.4a% than healthy respondents at 8.3%. Additional analysis revealed that ALS patients had risk factors four times greater than those of healthy individuals.
The condition is further complicated by the fact that it appears to have little correlation to adequate nighttime sleep. EDS frequently interferes with work, school, relationships and driving which also marginalizes quality of life.
Excessive Daytime Sleepiness: More than needing a nap
Excessive daytime sleepiness is considerably more serious than simply feeling drowsy or run down from time to time. EDS is a powerful, ongoing and, sometimes uncontrollable, need to sleep during the day that is closely related to narcolepsy.
Some symptoms include falling asleep during tasks, and having trouble remembering what they’ve done or what they need to do. Often, EDS is caused by other sleep disorders, such as insomnia or sleep apnea.
For myself, I had finally adjusted to the idea that one benefit of ALS was the opportunity for a little “power nap” in the afternoon.
Now I am confronted with the idea that being sleepy may be another serious negative aspect of the condition.
EDS or Brain Fog?
Not being one to rely on medications, I have accepted the fact that I am now a living pharmacy, though I still do not the name of each pill or what it does, except riluzole which retards the progression of ALS.
That said, one prescription for cramping side effect might be extreme drowsiness. Great. Now the question becomes, is it the pill or EDS that is making me sleepy in the middle of the day?
I discovered the problem one afternoon when my caretaker was visiting and during our conversation I dozed off. I could still hear her talking and thought I was listening until I attempted to respond.
What came out was pure gibberish which took several seconds to register in my brain that I was making no sense.
What may be the onset of EDS seems much less severe when I simply thought it was BF or brain fog.
I stopped taking the pill in the morning, choosing only to use it at night figuring it might enhance my nocturnal repose.
Then I heard about EDS which immediately sent me back to square one.
The individualized nature of ALS
Part of the difficulty in dealing with ALS is that no two patients suffer in precisely the same way. Therefore what works for one person may not work for someone else.
Researchers have recognized the need for larger studies to confirm the links between the conditions. In that sense, there is progress . Among the biggest concerns is the possibility that more severe overall dysfunctions could be found. Those affections may mean a wider range of brain regions suffering from ALS effects.
One thing is certain, ALS patients are currently under-diagnosed and untreated. More research is necessary if treating the condition can, at the very least, improve quality of life.
For male patients, just remember that EDS is only one letter removed from ED. If and when that happens, then that’s the time to panic.
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
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Surrendering to sleep: Image by pixabay.com under CCO license https://www.pexels.com/photo/animal-cat-face-close-up-feline-416160/