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Avatar universal

Looking for the cause and a potential treatment for excessive daytime sleepiness

Hello,

I am currently looking for the cause and a potential treatment for excessive daytime sleepiness/chronic fatigue/exhaustion (not a CFS diagnosis) which I've been struggling with for a decade now. I feel tired even though I sleep enough, lack energy during the day, have memory issues and generally feel cognitively impaired. Drastically different from what I felt like years ago.

I am in my 20s and also an epilepsy patient. However, the anti-epileptic drugs are not the cause of my fatigue symptoms, but have proven to be very effective against my epilepsy and I haven't had a seizure since taking them.

I've had two sleep studies and it was concluded that I do not suffer from Sleep apnea, Restless legs syndrome or Narcolepsy. I do not have any trouble falling or staying asleep either. The only thing that wasn't right according to my doctors is my sleep architecture itself:

I can only paraphrase what they said as I dont have the sleep study report at hand right now, but could get it to provide further details if necessary.

Both sleep studies showed that the individual phases of my sleep are "delayed" and that the proportion of REM-Sleep I get is reduced. According to the doctors, there is nothing that can be done about that as treatment usually targets the causes for structural issues in sleep but not the sleep architecture itself (i.e. sleep apnea can disturb someones sleep architecture, so you treat the apnea and only thereby alter the sleep architecture).

Given the severe impact my symptoms have on my life, it is hard for me to simply accept a "We don't know why and we can't do anything about it". Hence I am asking/looking for additional information about disturbed sleep architecture which is not caused by the usual sleep disorders (as mentioned above: RLS, Apneas, Narcolepsy), other potential causes and most of all treatment possibilities.

I have, of course, already looked into other causes for my fatigue, had my thyroid checked, brain scan done, psychological evaluation and other things. Thus far the sleep architecture is the only thing that is out of the ordinary.

Thank you for taking the time to read my post.
6 Responses
973741 tn?1342342773
Ugh, that's terrible.  I've been plagued before by daytime sleepiness and drowsiness and also have been completely sleep deprived.  I had to upend my life a bit to ensure I got enough sleep as I too was having cognitive difficulty.  I was doing really bone head things like leaving kids in car ignition and walking into house to find the next day I had no juice in my battery of my car, or putting meat in a crock pot and not turning it on, etc.  And I just couldn't think straight. Really a dark time for me and I'm sorry you are also going through that to some extent or the full extent now and on a regular basis!

I do have a sister in law that has atypical narcolepsy.  She doesn't fall asleep in a moments time like the movies make it look like.  Instead, she is always drowsy and wants to sleep and finds it hard to stay awake.  And she gets 'out of it'.  She was driving when drowsy and got pulled over for driving. They gave her a sobriety test she was acting so out of it!  Anyway, she has medication she takes and it keeps her functioning during day light hours and then she goes to bed very early after work.

What I'm wondering is even if you are not diagnosed with narcolepsy, if you could be treated in a similar way with the same medications they use for someone like my sister in law. Worth asking!  
1 Comments
Thank you for your reply. Constant daytime sleepiness and the cognitive difficulties in particular really reduce quality of life quite a bit and people who never experienced those symptoms often dont understand that apparently. At least that is my impression after speaking to many doctors who told me that "being tired isn't that bad". Yes it is.

About medications:
Unfortunately, it is illegal to prescribe narcolepsy meds (or similar ones) if you don't have severe narcolepsy, where I live. My doctors told me that there is nothing they can do about that.

So my only hope right now is to find some treatable cause for my disrupted sleep architecture.
Avatar universal
Typically unrefreshing sleep and/or  excessive daytime drowsiness is a red flag for apnea.  Not saying you have this, but suggest discussing with your doc.  If you do, then CPAP treatment usually fixes the problem.
1 Comments
Kve bad multiple sleep studies done and no apneas were observed.
15695260 tn?1549593113
Hello, we appreciate your question. This study talks about sleep architecture and how enhancing what are called slow waves can help.  It lists several medications used for this.  Perhaps your doctor would look into this. https://www.ncbi.nlm.nih.gov/books/NBK19956/ / This basically focuses on stages 3 and 4 of sleep which might help with your problem.  For those following the thread, this is a nice article about sleep architecture explaining it well.  https://www.helpguide.org/harvard/biology-of-sleep-circadian-rhythms-sleep-stages.htm
3 Comments
Hello and thank you very much for your reply and links. May I ask which part of the study you are referring to and in particular where the medications are listed?

An interesting quote from the study:

"NREM sleep constitutes about 75 to 80 percent of total time spent in sleep, and REM sleep constitutes the remaining 20 to 25 percent. "

if compared with the results of one of my older sleep studies:

"[...]NREM sleep percentage: 95% and a reduced REM percentage of 5%."
Try this link instead for the study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2824211/  It has an in-depth view of sleep architecture and how slow waves can affect it.

This study talks about medications often used: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC181172/

Yes, that is interesting that your REM sleep percentage is very low and this could be an area to address and try to improve to see if it helped you be less fatigued during the day.  
Thank you, that is very helpful.
Avatar universal
Hi, I too have chronic fatigue that is not CFS and the docs don't know the cause. I am not a doc but have spent a lot of time trying to take good care of myself to be as functional as possible. I am trained as a scientist though, and have tried to find the best, most plausible, and safest treatments out there.

some quick tips from my experience:
-you say you don't have apnea but have you looked at the sleep study yourself? I ask because if you have sleep disturbances that are less than 10 seconds each, they are not considered to be apneas, and a cursory examination of your results will totally ignore them. Also, there are two 'scores' on a sleep study, the AHI and the RDI. One of them tracks breathing interruptions of less than 10 secs and one of them doesn't. So, check that out; based on what you see, you can decide whether to work on sleep quality or whether to work on other things. If you have breathing issues during sleep that are too short to be apnea then you may have UARS (upper airway resistance syndrome). If you wake up feeling not well rested, this is a distinct possibility.

- in a larger sense, what you have going on is a 'subclinical' issue; that is, because you aren't bad enough to show up on tests, many docs won't be helpful. After a lot of looking, I found a functional medicine MD who is willing to work with me as a team to optimize my health, and that has helped me out a lot. One quick example: TSH is the standard first test for thyroid stuff. optimal TSH is (if I recall) < 2.0 but if your TSH is less than something like 4 or 5, it's considered 'normal.' But 'normal' might not be good enough for you, you might need to get into the optimal range in order to be ok. I have found that applies to LOTS of things, like vitamin D levels, iron and ferritin, thyroid, testosterone, iodine, etc. When it comes to this kind of stuff I would start with vitamin D (should be 60 to 80), then look at iron/ferritin (ferritin should be 50 - 100).

- this is extra personal but have you considered nofap? Some people report it makes a big difference in their energy levels -- could be something to try as a one month experiment?
2 Comments
Thank you for your reply, yogalad.

I have one of the sleep study results in detail at home and will take a look at it again. But in the end I'd need a diagnosis for proper treatment, so I would have to consult a doctor if I was under the impression that there were too many arousals.

Your second point I find highly likely: I have lots of smaller health issues and they might just add up and for some I might not be getting the right treatment right now. This is definitely something I will pursue.

And about your third point: That was NOT what I expected before I googled it!
Ha! yes I don't even know if that applies to you! Another one is that if you are a uterus-haver and you have a copper IUD, there are cases some people report where they get mood or energy symptoms, probably due to a bit of copper leaching into their system. Anyway, there are lots of other subclinical things to look at, and I've found it's hard to sift through what is plausible / based on evidence, and which claims are not worth pursuing with my limited energy budget. Good luck to you!
Avatar universal
I am 75 and can not remember ever having a refreshing night of sleep. I have used a CPAP for a year but it did not help. I dream all night even during short naps. I saw a different sleep doctor recently and he diagnoswed this as EPIC dreaming (non REM dreaming). He said it is rare, little is known about it and there is no known treatment. He prescribed  Modifinil, a stimulant to help with alertness (very expensive).
My primary care doctor prescribed Venlafaxine for chronic headaches. It did not help with headaches but did seem to supress or at least my memory of dreams. I have been on this for two weeks now.    The next thing I plan to try is hypnosis.
Avatar universal
Try (and it is super hard) to avoid ALL processed foods and limit alcohol.  You would be helping the cause. I know it's hard but when I eat what God created and not chemical companies - trust me - they are impacting our lives
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