I Wonder How Many Of Us Have A Sleep Disorder

[tex]

Hi All,

Before my symptoms started, I didn't know what sleep problems were. When I went to bed, unless thunder and lightening shook the house, I slept like a baby. I only slept for 4 or 5 hours, on the average, but I slept soundly, and I woke up refreshed, (I used to get up around 4 am, so that I could go out to my office and take care of all the paperwork needed for the day ahead, with no worries about the phone ringing, or anyone showing up to waste my time talking).

After my symptoms started, I had all sorts of sleep problems, due to the aches, pains, stiff achy neck, headaches, ridiculously bloated and painful gut, leg and foot cramps, nausea, diarrhea, etc. - you get the picture, I'm sure. Some nights, I got virtually no sleep at all, and during the day, I was often like a zombie, because of it, and I'd have to take a break, and try to catch a few zzz's, whenever I could no longer keep my eyes open.

After I was able to attain remission, my sleep improved, of course, but my sleep pattern never returned to what was originally "normal" for me. On some nights,I found it difficult to get to sleep, and I frequently woke up during the night, and had a lot of difficulty falling asleep, again. Another thing that I noticed was that during the REM phase of sleeping, my body was not always immobilized, the way it should have been. During REM sleep, all muscles, (except the eye muscles), are supposed to be unable to move. This is so that we don't hurt ourselves, (or sleepwalk), when we are having vivid dreams. When my symptoms were active, I discovered that I sometimes was not immobilized. More than a few times, I kicked the wall, or a piece of furniture beside the bed, hard enough to wake me up from the pain. In the dream, of course, I was kicking at a rabid dog, or a pouncing puma, or some other hostile creature.

Unfortunately, I found that the problem didn't end, after I attained remission. And 7 years later, I still have the problem. Fortunately, it only happens occasionally, (at least I only notice it occasionally), but who knows what is actually going on while I'm asleep? Maybe I'm flailing about regularly, and just don't realize it. I've come close to breaking a toe, a time or two, and the pain was so bad, a few times, that I couldn't get back to sleep, but the worst event happened a little less than 2 weeks ago, (on the 5th of July).

I dreamed that the wall next to the bed was full of big spiders, and they were all heading down toward me. Instead of being paralyzed with fear, (the way I should have been), I promptly bailed out of bed, to get away from them. Luckily, I landed on my butt, (rather than my head), and my right hand, apparently, because they both hurt like hell, when I woke up, and started getting up off the floor. I had to pick up a phone, and a few other things that I had knocked down, on my way down.

Anyway, that little incident made it pretty clear to me that I definitely have a REM sleep disorder, and I have no idea if it was caused by damage due to years of untreated gluten-sensitivity, or if a couple of years worth of sleep disruption due to my symptoms, caused the problem, but I'm pretty sure that I didn't have the disorder prior to the advent of my symptoms.

So I'm wondering if anyone else might have seen any connection between this disease and a sleep disorder.

Tex

[natythingycolbery]

I was pretty much born an insomniac... so it came before the MC!

[mbeezie]

I had insominia after my son was born. At first I thought it was just from being a new mom. After I could no longer use that excuse I thought it was peri-menopause. I would often only sleep 4 hours per night and would function OK but knew I was not getting enough rest. The problem got worse as time went on because I got GERD and restless leg symptoms. However, within a week of going GF I started sleeping like a baby and am not easily awakened. The insomnia cleared at the same time my neuopathy cleared from going gluten free. I continued to have D after going GF but I was 100% certain that my neuropathy and insomnia were related to gluten.

Mary Beth

[Deb]

I have had sleep issues for a number of years pre LC. I finally did a sleep study last December and the doctor said I have two issues...sleep apnea, which between that and my snoring were waking me up about 25 times per hour. I also have some insomnia which involves waking up at 1-2 a.m. and having trouble getting back to sleep. The CPAP has helped the first issue a lot and I'm sleeping more soundly the first part of the night but I continue to struggle with the insomnia.

[starfire]

I used to sleep like a log too... for however long it was. I never bothered to keep track. HaHa

Those days disappeared after MC and I was lucky to be getting 3 or 4 hours a night. 5 hours was a good night. Some nights it seemed like I didn't sleep at all. Those were the absolute worst.

It got some better until Bill passed away, then to get any sleep at all I took whatever was handy (and too much of it) to get any sleep at all. Much better now but still taking 1 Ambien at bedtime.

No I didn't become a "pill junkie" and had no trouble giving up "extras" after I did some adjusting to my life changes.

Love, Shirley

[tex]

I can recall at least a couple of members who reported sleepwalking, which is another type of REM sleep disorder. So far, I haven't caught myself sleepwalking, at least.

For a twist on the subject of insomnia, consider the Mexican tetra fish. Some species of this fish that live in caves, are blind. For some reason or other, they have evolved to need much less sleep than their relatives with normal vision.

"In some ways, the sleep phenotypes of cave fish are similar to those of humans with sleep disorders," explained Borowsky. "They go to sleep, but only for relatively short periods, then they awaken and remain awake for relatively long periods."

The researchers determined that, over a 24-hour period, sighted fish slept an average of more than 800 minutes (13 hours) while blind fish slept an average of only 110 to 250 minutes

.

http://news.discovery.com/animals/blind ... 10411.html

Tex

[natythingycolbery]

For a twist on the subject of insomnia, consider the Mexican tetra fish. Some species of this fish that live in caves, are blind. For some reason or other, they have evolved to need much less sleep than their relatives with normal vision.

"In some ways, the sleep phenotypes of cave fish are similar to those of humans with sleep disorders," explained Borowsky. "They go to sleep, but only for relatively short periods, then they awaken and remain awake for relatively long periods."

The researchers determined that, over a 24-hour period, sighted fish slept an average of more than 800 minutes (13 hours) while blind fish slept an average of only 110 to 250 minutes

.

http://news.discovery.com/animals/blind ... 10411.html

Tex

Aha! Maybe that is why my Dad nicknamed me Kipper

[tex]

Tex

[Karinm]

Hi, I have a sleep disorder since coping with LC . Every morning at 5 a.m. I run to the bathroom and continue doing so for most of the morning.
I am doing the pep to bismol routine now which eases things a bit but so far has not been the answer. At first it worked quite well and than things are going a bit downhill again.
Has anybody had any experience with peptobismol 2tabs 4times a day? Would like to hear more about it.
Needles to say I continue watching my diet. No remission yet and it is hard to keep once spirit up.

Karinm

[sarkin]

Karin,

I did Pepto 8/day, but did not keep the full dose up for very long. If you were getting better and have had a backslide, it's likely there's either hidden gluten sneaking in (either in packaged foods, or cross-contamination - especially easy to get cross-contaminated in a restaurant, but it can happen at home, too) - or it's possible another food has surfaced as reactive for you. I was fortunate to be able to reduce my Pepto dose after a couple of weeks, and only take it now very occasionally (I have it in my purse always, just in case).

Having a super-limited diet was my silver bullet to get me past the worst days, and I remember those awful mornings and send you lots of sympathy. I started out with bananas, chicken broth, and not much else - no grains of any kind, no dairy... and then I started added well-cooked vegetables to my broth (carrots, potatoes - no greens in the beginning). If you can find an applesauce with no ingredients other than apples, a small amount might be good. It sounds grim, but quite honestly it's a heck of a lot more fun than being locked in the bathroom. Once I started doing that and the Pepto, I started to feel like I was making progress. (My husband no longer asks "are you OK??" when I step into the bathroom... 'cuz usually I am, and I'm not in and out of there constantly.)

It's hard to prepare super-simple homemade meals when you feel awful - you have to do plan your cooking/shopping for when you have the energy (or the help). If there are wooden or bamboo spoons in your kitchen that have been used for preparing food that might have gluten or dairy... they are suspect. Cutting boards...

Suspicious foods when your symptoms are active include:
fiber - lettuce in particular but many raw/fresh fruits and veg can upset the gut when it is inflamed;
added fats/oils (small amounts of olive oil can be OK, but keep it very limited);
sweeteners or sugars of any kind (this isn't true for everyone but sure was for me, and I'm not the only one - I still find that limiting sweetness makes a difference.

Several months later, I do now eat some commercial products, like coconut milk, etc., but keep them to occasional foods in limited amounts. Sure, it's inconvenient not to be able to really on convenience foods. But not as inconvenient as relentless D, that's for sure!

Hope you start feeling better,

Sara

[Sheila]

I have had sleep problems since a child. I answered "no" to the poll because I have always had nightmares, flying out of bed to land on the floor more than a few times. Just last night I was screaming for help and woke up my husband. Don't know if this has anything to do with MC but I'm a lousy sleeper, too. Never thought of it as a disorder.

[tex]

Sheila,

I don't understand why you answered "no", because you clearly have a sleep disorder if you are able to physically move, while dreaming.

Tex

[dgshelton]

I used to sleepwalk as a child. I even went as far as taking a shower, getting ready for school and walking out the door. Thank goodness my mother heard the door open and she stopped me before I went too far. I would get up and go into the living room where my mom and dad were and turn off all the lights then go back to bed. I also got up many times as a teenager and had a conversation with my mother. I would tell her everything! A lot of things that teenagers don't want their parents to know! She would always inform me of what I had told her the night before. It was terrible to get in trouble for something you didn't even remember telling her! LOL. I laugh about it now, but it wasn't in the least bit funny then. Thank goodness I grew out of it!

Hugs,

[Gloria]

I've had insomnia periodically as long as I can remember, so I guess I should answer "no."

I have another question - has anyone ever been tested for sleep apnea and tested negative? It seems to me that everyone who goes for the test is positive. A friend of mine said that the person who administered the test for her also sold the appliance. She thought it was a conflict of interest and declined the appliance. Is it possible that we all have times during our sleep when we temporarily stop breathing? Ie., is this a natural condition of sleeping?

Gloria

[tex]

Gloria,

That's an interesting question. Of course, this is a lot like getting tested at Enterolab. No one is likely to order a test unless they are having digestive system issues, and most digestive system issues are caused by food sensitivities.

Getting tested by someone selling the equipment would definitely appear to be a conflict of interest, however. Presumably, that's why doctors aren't allowed to sell prescription drugs.

Tex