Published Research - General Sleep and RLS (WED)

[ViewsAskew]

During my last visit with our neurologist, I was quizzing her about my possible future with Alzheimers since I have a family history. She made an offhand comment that Alzheimers was one thing that my wife did not have to worry about, which I assumed was a reference to a connection with MS. I asked my wife about it and she had never heard about anything like this from any of her previous physicians.

So, maybe there is a belief among some that there is a relationship. I am not quite sure how I would rate this particular doctor. She has been competent for most of our needs, but after all, 50% of the physicians were in the bottom half of their class at med school.

And, just like the rest of us, physicians have to get their info from somewhere. They are no less likely to hear things and belief them without checking the source!

And, to both of your points, there is a LOT of casually cited info on the Web that people with MS rarely have other cognitive issues, other than those caused by MS. It's possible that there aren't a lot of studies done on it and it's folklore that everyone sort of relies on. It was not easy, actually to find any supporting info to the study I did find. I think it's clouded because people with MS can get a form of dementia - and it can be really hard to tell the types of dementia apart. also, it appears that a chemical involved in ALZ can potentially help MS, and that the same area of the brain is involved in both. Unless you'd studied both of these, it would be easy to not know the specifics.

In case anyone is wondering, here are a study cited about the the topic above.
"A 2008 study showed that people with MS were no more or less likely to develop Alzheimer’s disease than anyone else in their age group. While this no doubt comes as a relief to most of us living with MS, many of us are still affected by MS-related cognitive dysfunction. This usually manifests as problems with short-term memory, maintaining concentration and completing word-finding problems, which can feel like some of the symptoms of early Alzheimer's disease or other kinds of dementia (and bring similar fears and frustrations).

For more on the differences between the symptoms and progression of Alzheimer's disease and MS-related cognitive dysfunction, read the full article: Does MS-related cognitive dysfunction progress like Alzheimer's disease?"

And, another quote from the Alzheimer's Society, UK:
"Other medical conditions that can increase a person's chances of developing dementia include Parkinson's disease, multiple sclerosis, chronic kidney disease and HIV. Down's syndrome and some other learning disabilities also increase a person's risk of dementia (see factsheet 442, Rarer causes of dementia and factsheet 430, Learning disabilities and dementia)."

[cornelia]

This has been researched now and we can now eat at night without feeling guilty (LOL):

Sleep Med. 2013 Dec 1. pii: S1389-9457(13)02000-5. doi: 10.1016/j.sleep.2013.08.796. [Epub ahead of print]

Nocturnal eating is part of the clinical spectrum of restless legs syndrome and an underestimated risk factor for increased body mass index.
Antelmi E1, Vinai P2, Pizza F1, Marcatelli M1, Speciale M2, Provini F3.
Author information
Abstract
OBJECTIVES:
We aimed to investigate the prevalence of night eating syndrome (NES) in a large cohort of patients with restless legs syndrome (RLS).
METHODS:
Our cross-sectional study included 120 patients examined at the University of Bologna Centre for Sleep Disorders, Bologna, Italy, and met all four International RLS criteria for the diagnosis of RLS. Each patient underwent a semistructured telephone interview investigating demographic data and general health status, RLS features and severity, presence of excessive daytime sleepiness, and presence of NES.
RESULTS:
The sample included 37 men and 83 women with a mean age of 63.8±11.5years. There were 31% of patients who reported episodes of nocturnal eating (NE); among them, 17% fulfilled the new diagnostic criteria for NES. Comparing RLS patients with and without NE, there were no differences in RLS features. However, RLS patients with NE were older (67.2±11.6 vs 62.4±11; P=.038), were in a higher body mass index (BMI) range (27.7±3.8 vs 26.1±4.1kg/m2; P=.023), were taking more drugs for concomitant diseases (89% vs 72%; P=.031), were more likely to report insomnia (40% vs 23%; P=.041), and were using more hypnotic agents (37.8% vs 19.3%; P=.050) and dopaminergic drugs (65% vs 46%; P=.041). When comparing those RLS patients with NES diagnostic criteria and those without NES, no differences emerged in demographic, clinical, and RLS features; however, NES patients were in a higher BMI range (28.3±4.1 vs 26.2±3.9kg/m2, P=.037), were more frequently smokers (43% vs 17%; P=.027), and were more frequently using hypnotic agents (30% vs 24%; P=.025). Lastly, no differences were found when comparing patients with a NES diagnosis and those with NE not fitting the diagnostic criteria for NES, except for a higher use of benzodiazepine drugs (BDZ) in this latter subgroup (29% vs zero; P=.014).
CONCLUSIONS:
A nocturnal compulsion to eat seems to be an intrinsic part of the clinical spectrum of RLS manifestations and an odd risk factor for increases in BMI in RLS patients. However, it is still not clear if NE in RLS would fit in one of the two known categorized syndromes of NE (i.e., sleep-related eating disorder [SRED] or NES) or if it represents a different strictly RLS-related eating behavior.

Corrie

[ViewsAskew]

Interesting. Too funny, I glanced at it and saw Pizza! Then I realized it was the name of one of the researchers, not food they tested .

[Maria]

Compulsion?-- or just because I'm in the kitchen.

When I wake up at night, it's not ever because I'm hungry. Usually I fix a cup of tea (decaf, right?) and go walkabout while the kettle boils. But guess where the stove is. Yep, it's also where the cookies are!

I've been trying to keep in mind, not the BMI and love handles so much as the harder to picture, but far more important liver function. Apparently the liver can't do two things at once (that I appreciate!) and "some proteins need a period of fasting to operate properly."http://www.the-scientist.com/?articles.view/articleNo/37269/title/Out-of-Sync/.

What's your experience with eating? The only time I had a compulsion was when I was taking zolpidem. One morning I awakened to find an empty carton of rice pudding in the sink (it was a big carton) and no recollection of how good it must have been.

[badnights]

Lately, I can't stop eating at night. I am pretty much constantly making myself something to eat, from supper time til I go to bed many hours later. So about 7-9 hours of steady eating. For some reason I'm not gaining weight very fast, but that won't last forever - probably because I'm playing sports 4-5 nights per week, but that ends in April, and if I don't work in the field this summer I will blob out.

I have to remind myself that it's not real hunger, that it's more of a craving for something that isn't really sugar or fat, tho that's what it seems like superficially - when I think really hard about it, I can tell it's a craving for sleep.

[Polar Bear]

I am the same.... eat...eat...eat.

I wonder.....coulld this come within the realm of 'comfort eating'.

[cornelia]

I always feel that eating keeps the symptoms a little at bay because you are concentrating on the yammie feeling.

Corrie

[Maria]

You know what? You're right. I remember reading Robert Waterman's' column in Nightwalkers where he shared his experience eating -- raisins, I think -- really slowly, one at a time in a concert so he could attend without too much fidgiting. I couldn't go to a movie without s-l-o-w popcorn munching.

[badnights]

I read the out-of-sync link posted by Maria, and I am re-thinking how I've allowed myself to eat whenever I want. I typically have not eaten breakfast until 2-3 hours after I get up, "lunch" might be 3-4 hrs after that, then starting about an hour or two after that, I snack or eat until I go to bed. If I read the article right, I might be setting my one of my peripheral pacemaker clocks to rev up at nighttime and sleep in the mornings.

It could also be that something wonky in my body has re-set the clock that way. Who knows. But I'm going to try to move my eating to normal daytime hours, and see avoiding food during normal nighttime can help move my personal nighttime more in sync with the rest of the world's.

[ViewsAskew]

I've never really been hungry in the morning - even as a child my mom MADE me eat breakfast before I could leave the house, but I didn't want it.

Now that I'm allowing myself to sleep during the day - 9-5 or 10-6 most days lately - I eat a BIG breakfast because I eat dinner with my husband when I get up. And, I'm hungry. I find I eat much less in the early morning before I go to bed - I have a light dinner at about 5 AM and then often do not snack. When I try to sleep at night, I usually eat 50-75% of my calories in a few hours before bed!

I've been trying to figure this out....I've actually lost a few pounds without trying. Very strange.

[badnights]

That would suggest that something else in the body is re-setting the food-desire cycle, as opposed to eating habits setting some metabolic clock to a cycle that is out of sync with the main sleep cycle. I cannot so clearly tell cause from effect because I've never just let myself go on my body's preferred schedule - I'm always trying to stay in sync with the world.

[ViewsAskew]

That would suggest that something else in the body is re-setting the food-desire cycle, as opposed to eating habits setting some metabolic clock to a cycle that is out of sync with the main sleep cycle. I cannot so clearly tell cause from effect because I've never just let myself go on my body's preferred schedule - I'm always trying to stay in sync with the world.

It's very unnerving to let my body do what it wants. I wish I were single, lived alone, and could spend 6 months completely out of touch with everyone. It's so hard to explain it to family. And impossible to make meetings or schedule anything.

I feel calmer and happier in one way, though underlying it I'm anxious and scared. Scared that it won't work and scared that I don't exactly know what's coming. But, much calmer in that I do not have to pretend anymore. I'm tired, I sleep. I'm wired, I stay up. I'm hungry, I eat. Pretty simple.

I had my first meal at 5:30 - dinner with family (I awoke at 5 PM, walked over to my MIL's house and dinner was on the table). They ordered pizza because the family that came all eat gluten-free and don't have a good pizza option where they live. So, I had two pieces of pizza and quite a bit of salad. I had a snack around 10 PM - some plain tuna and some crackers. Then at about midnight I had my second meal - leftovers from the dinner - just two pieces of pizza. About 5 AM I had what would be my last meal - cottage cheese and apples. I did eat a few pieces of chocolate a little while ago. My calorie intake is completely inverted, much heavier from 5 to midnight.

I wonder if it will stay this way.

Oh, just thought of something else. I take a supplement that you're not supposed to eat two hours before or after taking it. I never can take it at bedtime when I go to bed between 11 PM and 2 or 3 AM - I've almost always snacked within 2 hours. But, Iv'e been able to take it almost every day since going to bed later.

[Maria]

You are a courageous pioneer. Your creative management of WED symptoms with massive lifestyle changes is bold, and your reporting the details and results here is a gift.

I hope eventually you will consider publishing your journey as a book. You're like a WED field anthropologist!

[ViewsAskew]

You are a courageous pioneer. Your creative management of WED symptoms with massive lifestyle changes is bold, and your reporting the details and results here is a gift.

I hope eventually you will consider publishing your journey as a book. You're like a WED field anthropologist!

I have a feeling only you and three other people in the world would read it, lol! Then again, maybe it would be helpful to have a book with each chapter the journey of a different WED sufferer. It would certainly be an interesting if we could make doctors read it!

[badnights]

not a bad idea.