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Sleep Fragmentation not caused by Apnea

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I have been trying to deal with a rare sleep disorder for 10 years now. I have gone to a leading sleep clinic for diagnosis and help but they have failed me, so hoping someone on the net might offer some help.

I have been suffering from some pretty bad fatigue for some time. I had done the normal route of the local sleep clinics and they at first did not see anything typical wrong with me (restless legs, apnea etc), so I got referred to Toronto Western Hospital. I have since underwent several sleep studies and tests over the years. They did eventually find moderate apnea and have been on a CPAP machine now for well over a year. This did help a bit but still am very very tired all the time. They did a repeat study and found that I have an issue where my brain pops in and out of sleep about every 3 minutes all night long. I fall asleep real fast again but they explained this interrupts my normal sleep cycle and likely is causing me to not regenerate properly when sleeping.

I have been prescribed Imovane that I can take every night if I want to help stop this but it again seemed to help but did not fix the issues. My sleep problems I think have resulted in physical depression and recently went on a low dose of Ciprelex for that but to be honest this seems to have made me so tired I can barely function.

My family doctor has been great, running tons of tests to rule out other causes but still no relief.

I have tried taking melatonin (resulted in a lot of migraines), I also took 5-HTP for a while and it helped a bit but no miracle cure.

I welcome any suggestions.
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First Helper debib
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replied March 1st, 2011
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Hi exhaustedguy and welcome to ehealth: I think that some people just may not require much sleep...Me, I can get by with 5 or six hours...My husband has to have 8 or 9.....My thought would be, why worry....Accept who you are and make the most of it...Maybe by doing this that you will be able to conquer the problem that blocks this from happening...Truthfully, if I couldn't sleep I wouldn't worry about it...I would read or search out things on the net that I didn't know about life......Either way, good luck....Take care...

Caroline

Caroline
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replied March 2nd, 2011
Thanks for the reply Caroline. Well my issue is not about how much sleep, it is about it being interrupted every 3 minutes. Dr said it is like my wife poked me in the ribs ever 3 minutes all night long. More or less sleep does not affect this as the sleep itself is interrupted.

It is hard to accept this as I am constantly exhausted and think this results in depression. Quality of life is not that great being in this state all the time.
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replied March 2nd, 2011
I apologize greatly to you! Oh dear how aweful that would be. Have the doctors recommended no caffeine? as this stimulates all brain activity, and increasing physical activity thru out the day? My husband has a similar thing, and we found him not drinking any caffeine (energy drinks, tea, pop, coffee) and him exercising an hour in the morning and doing strong cardio exercise for an hour before bed, and a relaxing shower, helped him greatly, along with sticking to a strict schedule. Now, a newborn changed that a bit, but he is seeming to get back on track again. I can see how you have paired the two together it makes perfect sense, lack of sleep results in imbalanced hormones, which would increase depression risk. And, you may need to go on a strong sleeping pill because its not you- its your brain, and until they can regulate your brain acitivity, you may need to find a different method. Also, the pill they have you on for depression caused major problems for me. Migraines, blinding, etc-- so if you are not satisfied, have your doctor take you off it and try Seroquel, 100 mg before bed. This is an anti-depressant but aids in sleep. SHould help a bit Smile
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replied March 2nd, 2011
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exhaustedguy wrote:
Thanks for the reply Caroline. Well my issue is not about how much sleep, it is about it being interrupted every 3 minutes. Dr said it is like my wife poked me in the ribs ever 3 minutes all night long. More or less sleep does not affect this as the sleep itself is interrupted.

It is hard to accept this as I am constantly exhausted and think this results in depression. Quality of life is not that great being in this state all the time.


Hi exhaustedguy....I hurt for you...I cannot imagine how difficult it would be waking up every few minutes...I wish I could give you some good suggestions, but I can't...I thought it was something different...Either way, good luck and I hope that it gets better...Take care...

Caroline
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replied March 16th, 2011
sleep problems
caroline,no offense intended, but you obviously don't know crap about sleep. i have suffered from insomnia problems for years. it's very difficult to find doctors to take you seriously. i am exhausted. my immune system is poor. i have depression. i have rls and take meds for it. the are many meds that exacerbate my rls..seroquel for one. i totally avoid caffeine. excessive exercise is not recommended before bedtime. low levels of light are recommended to increase the natural levels of melatonin. i myself cannot take melatonin off the shelf-messes w/ my rls. at times i jerk so hard at sleep onset tht i 'fly' out of bed. i take klonipin for that(only .5mg.-anymore than that, i messes w/ my rls). sleeping pills don't really help, except for halcion. for some reason drs. won't prescribe it anymore. i don't have sleep apnea- i don't even snore. by the way i was a director of a sleep lab. anyway, i don't think you're qualified to give advice about insomnia. the brain and its sleep is still a field that isn' very well covered during med school unless you specifically study sleep disorders or neurology.
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replied March 21st, 2012
One in the same
my neurologist says my sleep lab shows I awake every three minutes as well and that I have very active legs, light snoring but no apnea. I went in for Narcolepsy testing since I was dignosed when I was 17 with acute narcolepsy but they never filed the results of the sleep lab. Well they can't diagnose anything for the stayover narco testing because of the anti-depressant I was on. Since I am pregnant the only thing I can take is melatonin but it says no to take if you are on an antidepressant.
Long story short I feel your pain, unfortunately those who have never been a victim of constant fatigue and exhaustion can not understand what it is like. Iknow that this in itself is depressing. However I have noticed a difference in my wakefulness since I started prozac.
Best of luck, and please keep me updated if they figure anything out!
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replied October 11th, 2013
Hi ExhaustedGuy, I am also an exhausted guy. I actually had to take 3 months of medical leave from work because I could not think or focus and had memory problems, I felt physically depressed, but not mentally (until later). I felt fatigue and extreme tiredness and any physical injuries, like tennis elbow, would not heal (due to lack of real, rejuvenating sleep). I finally had a sleep study done and they said I have "sleep fragmentation." I do not have apnea or restless leg syndrome, just sleep fragmentation (my brain wakes up about 37 times every hour, depriving me of the deep, rejuvenating sleep all of our brains and bodies need).

Sleep Doctor gave me this news: The part of your brain that knows when and how to sleep is broken. Good news is that you can reteach your brain how to function again.

She said there are two brain functions for sleep: The circadian rhythm (24 our cycle) and the "S-Process". She described the S-Process as some chemical in the brain that builds-up over the course of our day and gets big enough to cause us to be sleepy. When we sleep, the chemical is burned up or used so we awake with an "empty" reserve of it. Sleep fragmentation screws up both these functions.

Sleep Doctor gave me these instructions to retrain my brain to use the 2 functions properly:
1. She did suggest I take Melatonin 1 or 2 hours before bedtime to help augment my natural levels.
2. Get lots of bright light in the morning as soon as you wake up, and during the daytime. Ideally sunlight - go for a walk, or stand by a window for a while. Optionally buy one of those bright lights for Seasonal Affective Disorder.
3. Lower your light exposure in the evening. If you're on a normal day/night schedule, she recommended dimming the lights after 6:00 or 7:00 PM. This supports your natural circadian rhythm and the darkness causes you to begin to produce melatonin. TV is fine, but avoid spending time on the computer after 6 or 7 PM. The computer screen tends to be closer to our eyes than a TV, and the bluish-light will signal our brains to stay awake.
4. As soon as you wake up, do some physical activity. This does not have to be exercise. It could be as light as washing dishes, doing laundry, or going for a leisurely stroll. The point here is to "engage" the brain upon awaking.
5. Any exercise should be done earlier in the day than the evening. This may conflict with your work schedule, but until you can retrain your brain how to sleep properly again, avoid excursion in the evening.
6. "Take out the Garbage." My doctor uses this expression to refer to "emptying the mind." This should be done after dinner, NOT at bedtime. This is where you write down all the things that you have to do the next day, as well as anything that bothers or annoys you from today. Get it out of your head!
7. In the evening, if you watch TV or read a book or talk with your spouse, be sure the content is "light". Do not watch "intense" crime dramas or political debates, or read similar books. Do not talk politics or finance with your spouse in the evening. You want to begin to disengage the mind.
8. Temperature. She said that lowering of our body temperature makes us sleepy. This is not a static temperature, but rather the "moving" from warmer to cooler. So she suggests taking a hot shower 1 or 2 hours before bed, and if you can, keep the bedroom cooler than the rest of the home. With your body warmed from the shower, when you finally go to your bedroom, your body's temperature will drop slightly and ideally make you sleepy.
9. "Disengage the Mind." This is at bedtime, and my doctor suggested I learn how to meditate, listen to music or sounds of nature, relaxed or deep breathing.
10. Now that we're at bedtime, my doctor made the point that the only purpose for the bed should be for sleeping and sex. Don't watch TV or read in bed. In fact, she suggests that if it is feasible, there should be nothing else in the bedroom, except that which supports sleep and sex. No computers or TVs, no office desks, no paperwork or piles of mail.
11. If I wake up, she suggests giving yourself 20 minutes to fall back asleep. If this fails, get up and resume meditation or other activities/exercises to disengage the mind.
12. Narrow your sleep hours. People with sleep fragmentation do not get the sleep they need. In fact, they could be getting less than half of the sleep the think they're getting! So we tend to sleep longer hours than "normal" people, just so we get the normal number of hours of sleep. (In my sleep study, I "slept" for 7 hours, but was really only sleeping for 3 hours! So for me to get a refreshing 6 hours of sleep, I would need to be asleep for 14 hours per day!!) Sadly, sleeping longer hours is bad for retraining our brains and the recommendation here is very difficult: Reduce the number of hours you're in bed to only the 6 to 8 hours you would normally get. I know this sucks, but this was one of the strongest suggestions my doctor made.
13. Fixed Wake Time. Whatever time you determine is best for you to wake up and start your day, make that time fixed for every day of the week, whether it's a weekday or a weekend. Why? This teaches the brain what a 24-hour cycle is. Remember that sleep fragmentation means our brains don't recognize the 24-hour clock, which is why we often fall asleep in the middle of the day or wake up, ready to go, in the middle of the night. By fixing our wake time at the same time every day we will slowly teach the brain that a 24-hour sleep-wake cycle exists. My doctor was very strict about this. You must stick to the same time every day, regardless of when you went to bed! Bedtime is flexible, but be kind to yourself. Wake time was not negotiable!
14. No Naps. Yes, I saved the worst for last, sorry. This was not a suggestion, but the one absolute command my doctor gave me. Keep in mind, she also told me not to drive during my "retraining" period. No naps has been the hardest thing for me to stick to. But remember the S-Process? We need that chemical to build up in the brain all day so we can fall asleep and stay asleep at night. Taking a nap will deplete the chemical build-up so that we won't have enough at night to really get us to fall sleep and stay asleep.
Be aware that even when I've not napped at all, I still can find myself waking up at night. Be sure you have emptied your mind of worry and sleep in a comfortable place where you won't be disturbed. Then, just be patient... My doctor said it could take weeks, months, or years to retrain the brain's sleep cycles. By being very strict with these training guidelines, you might be able to reduce your recovery time.
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replied October 25th, 2013
Well a year and a half has passed since my original post here. I have had another round of visits with sleep specialists including another sleep study. This time around the diagnosis has changed slightly. They now say I have a form of restless legs syndrome. Same sleep fragmentation with me waking up about 50 times an hour. He said I am getting less than 1% of my required REM and deep sleep.

Now my RLS is not that my legs feel uncomfortable but that my legs twitch or move many times an hour.

He is trying me on Clonazapam instead of Imovane and I have felt a bit better but am still very tired during the day. At the same time I am being phased off of anti depressants as he feels the root cause of the problem is my RLS and once we get this under control the depression will be gone.

I am trying different dosages of Clonazapam to find one that works best without giving me too many side effects and will be following up with the sleep dr in a month or two.

I am keeping my fingers crossed.
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