Seeing doctor about lifestyle and sleep disorders

Kimchee · Joined: 16 Oct 2011 Posts: 61 Location: Quebec

Does certain foods or exercise help your narcolepsy symptoms. Can you control the severity of your symptoms by your lifestyle. I know what the heck give me the medication its too hard or not going to work situation but is there hope in lifestyle change. He thinks giving up simple sugars and foods made with yeast is a good start. Do I have Narcolepsy?
Yes and my husband is to blame for the diagnosis. Another story.

Willow2007 · Joined: 03 Feb 2007 Posts: 1476 Location: Iowa

My narcolepsy was worse when I drank nutrasweet in my soda. I went to Throw Back Mountain Dew, made with real sugar, and I think its helped a bit. Lots of people try the gluten free diet, which they swear helps them. My best thing is to have perfect sleep hygiene. When I was working, I had to be up at 4:45 am for work. So on even my days off, I went to bed at the same time, woke up at 4:45 every day. Having good going to bed routines helps too. I'd take a shower about an hour before, using lavendar scented soap, brush my teeth, check my email. Take my Xyrem, let the dogs out, bring them in and go to bed. Every night. It helped me. Now that I am not working, I tend to try to cheat my time to go to bed, and it screwed everything up. I am now working on trying to get it back on a normal time frame, not 4:45 am, but 6:30 am.

My sleep doctor's nurse told me that some of my fatigue might just be the lack of not doing much, so its half fatigue and half habit. so get a routine going that gets you up and moving. I get up, get dressed, make coffee, so I'm up and moving, However, then i get on the computer, then stretch out and watch TV for awhile. So I am definitely lazy . Of course, I also have fibromyalgia, so its not actually laziness.

Kimchee · Joined: 16 Oct 2011 Posts: 61 Location: Quebec

Thank you for sharing so much. I do like the gluten thought rather then the yeast. Wheat or gluten products don't always have yeast and he is addressing part of the problem with excluding yeast. I am amazed how people deal with their lives with disabilities. My narcolepsy if I really do have it is mild. Willow2007 your narcolepsy needing Xyrem is another story and it makes me ask myself. What have you got to worry about Kim ?
Thank you

Willow2007 · Joined: 03 Feb 2007 Posts: 1476 Location: Iowa

My narcolepsy is fairly under control. We always need to differentiate between sleepy or tired. for years, I told my doctors I was so tired all the time. So they would give me anti depressants for depression, etc. My N, since being on Xyrem is about 85% unnoticed by me unless I stay up too late, screw up my hours of sleep, etc. Then I drag even more and spend the day on the couch. I don't know how much of my problem is narcolepsy and how much is fibromyalgia. 50% of PWN have fibro. 33% of PWN have IBS. Gluten could easily be a problem in any of these. going on a GF diet would be a good idea, but gluten is in everything. You'd have to throw out almost everything. Ketchup has gluten, peanut butter has gluten, everything has gluten added. its not just breads. Its not as limiting as before. Nowadays there are GF boxed casseroles, like hamburger helper, breads, ketchups, soups, etc. But a just a few years ago, there were no GF foods in my store.

I know nutrasweet makes everything worse, in my case. I was considered pre diabetic about four months ago. Forgot I was going to have to retest, and I cut out all nutrasweet and high fructose corn syrup. Retested my A1C (for diabetes) and I was normal. My doctor was amazed, he told me, "I've heard of this happening, but never believed it."

Try different things. It certainly can't hurt and you will be aware of everything you are eating.

Interesting article I read yesterday. A town in Norway found out they had an intestinal parasite in their water, giardia lambia. Most people in town got sick with this. they cleared the water, medicated everyone to kill the parasite, and within one year, 4.5% of the people in town came down with CFS or ME. I had a giardia lambia parasite in 1986. Last time I'll ever use lake ice to make coffee. LOL.

Kimchee · Joined: 16 Oct 2011 Posts: 61 Location: Quebec

yes corn syrup is really really bad and USA use it in all cooking
I use palm sugar in my cooking

Willow2007 · Joined: 03 Feb 2007 Posts: 1476 Location: Iowa

I have started using coconut oil in cooking. I'm only 59 and still have my wits about me and don't anticipate any dementia in my future (none in my family). But coconut oil is supposed to prevent Alzheimer's in one's future. It is supposed to be a good oil for cooking, so I figured, "what the heck", It certainly can't hurt.