Polls relevant to Microscopic Colitis, and related issues, can be posted here, to allow for the collection of data that might help to shed some light on this disease, and it's treatment options.
Sara wrote:My husband read that some people get up in the morning, and can be up for even a few hours, but an EEG will show that their brains are still asleep.
That probably applies to me - I'm not a morning person.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I'm not either, Tex, and somehow I can fake it and get thru cooking breakfast for my peeps. Usually feel "awake" around 10. Not sure what that means healthwise, but I DO wake up and can function for the rest of the day. Life is a mystery.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
I was never a good sleeper as a kid and it only got worse as I got older. Due to severe headaches and migraines I had EEG testing at the age of 23 (1980). I was tested awake and asleep. Awake I was fine. During sleep I had seizures (the official diagnosis was an "epilepsy like" disorder). I was treated with epilepsy medication, which I did not tolerate well at all. One month later I was tested again, and still had abnormal brain activity. I tried to stay on the various medications, but quit when I realized they were making me worse, not better. One year later I had another EEG that showed nothing. I was deemed cured. However, I still had severe headaches and migraines, and do to this day. I have gone through all kinds of sleep problems for as long as I can remember - can't go to sleep, can't stay asleep, can't not go to sleep - you name it. I have no idea if the abnormal brain activity and the sleep problems are related or not, but my gut feeling is they go together. Along with the MC, which was not diagnosed till last year. Problems in that department have been with me all my life, too.
I knew that I snored, and my GP was on me for a couple of years because I kept complaining about fatigue. After he twitted me for everything positive that came out of the colonoscopy last year that I had put off for years, I let him send me for a sleep study. I don't usually struggle with daytime sleepiness, so my score was very low in the prelim appointment. The MD was about to let me go when I asked him about my high morning BP, mentioned my brother's sleep apnea and congestive heart failure, and my father's sleep apnea. He sent me home with a blood oximeter, and that showed that my blood oxygenation went down to 78%.
So I went in for the sleep study and was diagnosed with moderate sleep apnea. The chart I was given of my behavior recorded by the 26 electrodes hooked up to various parts of my anatomy was pretty graphic. I can't imagine a sleep clinic faking those to give a false positive sleep apnea diagnosis so they can sell a machine. There are places online where you can buy the machines at a steep discount anyway. I have to agree with Tex that there is really no reason to go for a sleep study unless you are already having problems. It's not a preventative test like a mammogram or most colonoscopies.
I still wake often at night, wide awake, and it takes hours sometimes to get back to sleep. I suspect that is more hormone issues than anything else, being a woman of a certain age. When I was staying with my father last week, I got up in the night and thought I had waked him up until he started snoring again. I timed the next one, and he quit breathing for close to 30 seconds. He was unimpressed when I told him the next morning.
My father used to have dreams that bombs were falling on the bed and he would yell at my mother and try to shove her out of the way. She would wake him up and tell him he was dreaming. I think that many servicemen and women probably have similar dreams. It would be interesting to know what the military doctors think about that.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Marliss wrote:I can't imagine a sleep clinic faking those to give a false positive sleep apnea diagnosis so they can sell a machine.
I don't think they fake the results, but I do wonder if it's common for people to stop breathing for short periods during sleep. IOW, we feel alarmed to hear that we stop breathing for a short time, but it may be a natural part of the sleep cycle for many people. Anyone who gets the testing done should probably have the expectation that they will test positive and be offered the appliance. Several people I've known who use it find their sleep is improved afterward.
Maybe someone here has had the testing done and didn't get a sleep apnea diagnosis, but as Tex pointed out, people without sleep problems have no reason to get tested. My daughter can sleep through anything - even an MRI. She inherited her father's sleeping ablilites, not her mothers. I wonder how she would test?
Gloria
You never know what you can do until you have to do it.
The rule of thumb is that you have to stop breathing for over 30 seconds, so I imagine that parameter has been set because people do stop breathing for shorter periods of time, especially in REM sleep. And blood oxygenation also plays into it. The oxygen level has to go below 85%.
The sleep apnea diagnosis goes from mild to severe based on the number of 30-second or longer episodes during an hour. My result (far better than I expected based on what I had been told by the tech) was 15.3, or 3/10ths of an episode into moderate sleep apnea. If my score had been lower, I think the MD would have helped me explore other possibilities for improving my sleep. As it was, he said that a CPAP would definitely help me, but that it was up to me.
Since I have claustrophobia, the CPAP that I have is actually a nasal canula, similar to how oxygen is delivered nowadays. It has two light, narrow, adjustable rubber bands that go around my head. It is much less restrictive than even the nasal mask that just goes over the nose. I would not be able to stand the full face mask and all the bands that attach it to the head. I have figured out how to adjust it so it fits comfortably, and the hose is so small and flexible that I even find myself sleeping on it. The main trouble I have is bringing up my hand to where the air venting just under my nose hits it, or moving the canula so it doesn't quite fit in my nose. Both those things make a wind noise that wakes me, but now just enough for me to make the necessary adjustment and then I go right back to sleep.
As I said before, I cannot imagine at this point having to use this the rest of my life, but the health benefits that I expect from it are major enough that it's important for me to use it now. I strongly encourage anyone who thinks they would profit from a sleep study and CPAP to do it. Your heart health is worth it, especially if you are a woman.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
I was diagnosed with Idiopathic Hypersomnia, which is very similar to narcolepsy. Basically, I sleep very poorly, but I can fall asleep anywhere and anytime. I was diagnosed a few years before my colon symptoms began.
Suspected sleep apnea is not the only reason people have sleep studies. I had my first sleep study because I was waking up about every 20 minutes during the night. I fall back to sleep very quickly, but because of the disrupted sleep pattern, I get very little stage 3 or 4 sleep. My first sleep study showed that I had mild sleep apnea (an average of 11 episodes per hour) and my doctor did not consider it worth treating. About a year later, I had to switch sleep doctors. Because the treatment for Idiopathic Hypersomnia had not been successful, my new doctor thought I should be retested for sleep apnea, expecting me to have gotten worse. My second sleep study showed that I no longer had even mild apnea (an average of 4 episodes per hour – mild apnea is 5 to 15 episodes per hour). Sleep apnea is not the only thing that causes poor sleep and not everyone who has a sleep study done is diagnosed with sleep apnea.
I have been gluten-free for 20 days...and I know I am healing but I feel like I have reached REM sleeep for the first time in my life. I have always had problems sleeping- I nap at night! Never can nap during the day either. REM sleep is nice.
Marliss, I am interested in your nasal canula. I am using the nasal mask but it is pretty intrusive. What brand of CPAP do you have? Mine is a Philips. My apnea episodes were 10 per hour and my snoring episodes were 15...meaning I was waking up nearly every 2.5 minutes. My sleep has definitely improved. I think I went years without knowing I had dreams. I just got some Provent http://well.blogs.nytimes.com/2012/04/0 ... -the-mask/ and hope it will be an option when traveling. I've only tried it twice and it's kind of difficult. It lets you inhale but really restricts the exhale, forcing you to breathe through your mouth. The idea behind it is that when you fall asleep you will be able to do it all through your nose. They recommend a week to adjust, which I haven't done yet.
Interesting subject. I sleep like a rock, too. I think I always have. And I would probably sleep a good 9 hours a night if possible. :) I very very rarely recall dreams or dreaming at all. hmmm
Interesting- I was just saying how I didn't sleep AT ALL last night. But that really seems to be most nights. I had insomnia as a teenager, then when I was pregnant with my son, I started having lower back pain, which affected my sleeping. 13 years later, and I don't sleep much at all. I woke up this morning feeling like I was on the verge of going from drunk to hangover. Dizzy and disoriented. I never feel "awake" until a few hours after I get out of bed- even if I have just been laying there.
I toss and turn and apparently talk and scream in my sleep when I do reach some sort of stage of sleep. I have even woken myself when talking.
Not to mention that if I AM getting some sort of rest- I am getting up every 40-60 minutes to go to the bathroom.
I don't have a primary doctor- but at this rate- I am desperate for some sort of sleep aid. I just can't function anymore. My head bobs and my eyes roll as I try to stay awake at work.
And I twitch now. Major muscles, like in my legs and arms, just randomly twitch- Like when you would be in school and start falling asleep on your desk and you got that sudden jerk of awake- that's what it feels like- but just in my muscles.
CNewman, that sounds pretty similar to what I was going through before I finally went in for the sleep study. I was just exhausted all the time. The CPAP has improved the quality of my sleep though I still frequently wake up, sometimes for hours, in the middle of the night. But the hours that I do sleep are better....I'm even dreaming again. I did get a prescription aid at the same time too and on nights when I really need to sleep I take a half of one. I don't know why but even if/when I wake up I can usually go back to sleep. I'm pretty sure my cortisol levels are impacting my waking up so I'm exploring options for that. Deb
Often only get to sleep at 3am and need to be up and about by 9am. I have to sleep during the day. I really need a full uninterrupted eight hours but never get it. Tiredness and lethargy are my constant companions.