Always exhausted, Sleep study showed nothing wrong, Nothing helps

[Jenn23]

I’m a 31 year old female and I’ve been constantly exhausted my entire life. When I was a kid, I was chronically sleep deprived and had a terrible time falling asleep and waking up. It would take at least 2 hours or more just to fall asleep, and I would be so exhausted in the morning it would be impossible to get up. My childhood was very stressful so no doubt that contributed to the problem, but I think the problem is more than just stress. I’ve always felt like I was an excessive night owl, finding it very easy to stay up late into the night and being full of energy when it is dark, but quite difficult to get up in the morning, even if I got lots of sleep. On weekends, I could easily sleep up to 15 hours and still be groggy.

Since my 20s, it became easier to fall asleep faster, but it still takes longer than it should to be able to fall asleep, unless I am so tired that I’m practically passing out before I get to the bed. Currently, I seem to wake up naturally after an average of 7 – 8 hours of sleep, but I still feel completely exhausted and find it difficult to get up in the morning. I have avoided caffeine completely since I was a teenager, since discovering that it just makes me feel sick and does not help me feel more awake. I drink primarily water and eat a healthy diet for the most part. I get plenty of exercise and am in good shape. I work outdoors so I get plenty of sun exposure during the day. I’ve done lots of research on sleep problems, felt like I’ve tried everything, and can’t figure out why I’m so tired all the time. As tired as I’ve always been my whole life, it is so difficult to fall asleep, that I’ve never been able to take naps during the day since it takes too long to fall asleep.

I always thought I had insomnia and perhaps sleep apnea (my father has obstructive sleep apnea and uses a CPAP). My doctor gave me a prescription for Ambien (5mg) to try, but I hated how I reacted to it. It caused me to stay in bed for a full 24 hours, waking up and falling back asleep periodically after it was daytime, being far too sleepy to get up at all. I even tried half a pill, and it did the same thing, just to a lesser degree. I tried melatonin supplements, which just made me heavily groggy for a full day after taking it at bedtime the night before. Valerian root and "Herbal Slumber" (which contains Valerian root) so far have worked the best for me, causing me to fall asleep quickly and waking up feeling more alert after only 5 hours of sleep. However, I noticed that when I take it for several nights in a row, it quickly becomes less effective and causes me to have an even harder time falling asleep naturally when I stop taking it. So, I only use Valerian root in extreme cases and avoid it as much as possible. I’ve tried over the counter sleep aids, but those actually make me very jittery and unsettled, having the opposite effect that they should.

I’ve been interested in sleep studies and even used to work as a sleep tech, until the long hours (commonly had +16 hr shifts with long travel) and severe lack of sleep (ironically) burnt me out and I could no longer handle doing that job. I thought I might learn something about my own sleep problems if I studied other people, and having a night job would be ideal for me, but the job wore me out instead and I’m still just as puzzled.

I eventually had a sleep study done on myself a few years ago but was very dissatisfied. I had a harder than usual time falling asleep and staying asleep for the test, so I only got a total of about 3 hours of sleep time. The sleep doctor (who was supposedly known to be among the best in the field) spent all of 5 minutes with me telling me that I had all 4 sleep stages and there is nothing wrong with my sleep, so the problem is something else. A $1500 doctor’s bill later, and I’m back to square one.

I am at a complete loss as to what to do. I practice healthy habits, eat a healthy diet, exercise, have low blood pressure, avoid stimulants like caffeine, don’t smoke, don’t drink, don’t do drugs, and basically tried every sleep aid and trick I can think of but nothing has seemed to work effectively. Not once in my life have I ever woke up feeling refreshed, energized, and alert. I go to bed and get up at generally the same times every day. I wake up feeling exhausted, am tired all the time, have a difficult time getting out of bed no matter how much sleep I’ve had, and feel my daily functioning suffers as a result of just always being tired. I don’t have any problem falling asleep at inappropriate times, however. I am generally healthy otherwise, don’t have any known health issues, and the only drugs I take on a daily basis are a multivitamin and occasionally Allegra 180 if I’m having seasonal allergies.

I have no idea what the root of the problem is, and apparently neither do my doctors. Any ideas?

[Anirbas]

I was recently diagnosed with idiopathic hypersomnia. Sounds to me like you may have this issue too. It's a recent issue for me (past two years). When I was in the military I was able to go for 36 hours and not need to catch up on sleep (only needed the average amount of sleep).

I went for a follow up today, and my doctor told me that IH was something that usually pops up in the second decade of life and that it's something I'll have to deal with. I was prescribed Provigil, but they changed it to Nuvigil today. I haven't started it. He said that the next step would be trying Ritalin or Adderall (sp?) if the nuvigil doesn't work.

I sleep fine, did two sleep studies and a nap study. Go through all the stages of sleep, and I know that I sleep well. But I wake up feeling like I didn't sleep at all, I tried to take naps to help alleviate the sleepiness, but now I feel so groggy that I can't wake up. I ended up going to a sleep specialist because I was terrified I was going to fall asleep while driving to or from work and hurt or kill someone.

Talk to you sleep specialist again. You may have to take medication. Good luck.

[Jenn23]

Thanks for your reply. I think I will try a different sleep doctor to get another opinion since the first doctor was basically useless, saying there is nothing wrong with my sleep and didn't work with me to find the cause or a treatment, aside from telling me to do the basic sleep hygiene and general health practices that I already do.

I looked into idiopathic hypersomnia and am discouraged to see the only treatment seems to be to take stimulants. I can't have caffeine because it makes me feel sick and jittery, rather than alert and awake, so I'm wary about how other stimulants would affect me. I can't stand the way pseudoephedrine makes me feel (jittery with racing heart). If these other medications used for hypersomnia have similar effects on me, I think I might rather just feel sleepy instead. I would love to feel not sleepy all the time though, so I'll try just about anything at this point!

[Carol A. Collins]

I'm sorry you're having so many problems. Have you ever considered trying a CPAP just because? My brother and I both have sleep apnea....to differing degrees. His has resolved after losing 100 lbs, but he continues to use the machine because he sleeps better with it, wakes more refreshed and just all over feels better. Mine is not weight related...don't know what is causing it, but I stop breathing at least 15 times per hour causing my oxygen to drop below 80%. I've used Provigil...it made me very anxious and jittery, which also made me..more sleepy. Stopped taking them after 2 weeks because I couldn't function. I would consider using the CPAP as a "rule out"...but I agree you should do another sleep study. If you aren't breathing properly when you sleep, no matter what else you do you will be miserable.

[Kariology]

Hello,

It is interesting to see someone else having the same issues as I. I sleep many hours (regularly 9-10hrs.) could take a four hour nap every-other day and still feel in a fog. I just got my sleep study results and no sleep apnea (1 waking event in 4.5hrs) of sleep. But I did wake up 21 times (which I am not sure if that is high or not) and only had a sleep quality score of 65%. The recommendation on the results (waiting for my dr. consultation) is sleep hygine.... which I am doing on my own.

Were you able to get a 2nd diagnosis yet? I am leaning towards idiopathic hypersomnia - but am worried the sleep dr. is just going to write me off as fine since no obstructive apnea. Just wondering how your trials are going as I am about to fall asleep at my desk after 2 nights of 9hrs and 4 hr nap yesterday. ugh.....

[kim w.]

Do you have any sort of chronic pain? I have fibromyalgia and am also always really sleepy and it seems like no amount of sleep makes me feel better. It may be a shot in the dark but i was just trying to suggest another thing for you to research to try and get help. Hope you find some help with your sleeping problems!
-Kim

[Rebecca Dale]

Hi

I'm a 32 year old female who suffered with extensive sleep problems in my mid to late 20s. I used to fall asleep fine, stay asleep fine ... then wake up in the morning feeling absolutely terrible - like I hadn't slept at all. My eyes were chronically dry and I was miserable.

I tried everything - doctors, nutritionists .. the works. I eventually tried acupuncture. I was extremely sceptical, really doubting it would work. My acupuncturist said I was extremely Yin Deficient and would need possibly months of treatment. I felt relieved that someone finally found something wrong with me and that was, if I'm honest, what kept me going back. I didn't notice an improvement until about 14 treatments in (weekly with herbs). The difference was like night and day. In the same week my sleep improved, my dry eyes disappeared, eczema cleared up and this feeling of agitation disappeared too.

I was so impressed, and so convinced it was the acupuncture that I started to train in acupuncture. I'm now fully qualified. I cannot recommend it highly enough for sleep problems - although I will say that a) it takes time b) find a qualified acupuncturist who is regulated by the standing body in your country c) Chinese Medical advice can differ from Western Medicine and often requires some commitment to change your lifestyle.

I would be happy to answer any other questions you might have. Sleep disorders in Chinese Medicine are treated according to the issue - e.g. difficulty falling asleep? staying asleep? waking early? recurring nightmares? vivid dreams? not going into a deep sleep? "muzzy head" in the morning? Chinese Medicine looks at symptom clusters - so they will want to understand your basic systems: digestion, sleep, bowels etc.

Also there are diagnoses for extreme tiredness in chinese medicine which are often not related to sleeping patterns. It is hard to explain the complexities of Chinese Medicine, but it is extremely beneficial in rebalancing the whole body to its natural state. I would steer very clear of sleep drugs which often suppress the problem without actually curing it.

[Terri de Haan]

How is your thyroid? You should check that out.
Also, I had 2 sleep studies done and like you didn't sleep much because of the wires etc.
When i went to my docotr he said I had central apnea even though I don't fit the profile. I eat very healthy and workout as well
i also used to work 12 - 20 hour days in the film biz.
What I did find out from a pulmonary expert was that I had central apnea. My doctor didn't mention that. That could make all the difference in the world.
If you have any good naturopathic doctors you could get a neurotransmitter test to find out what your levels are. it could be as easy as a few supplements to balance everything

[Terri de Haan]

OMG, you sound just like me. Very similar experiences with the natural remedies. You're right after a few nights - week they have the opposite affect.
Have you had your thyroid checked? And not once but 2x in your cycle, that is the only way they will get a proper reading as well as a full panel bloodwork done.
It looks like a lot of people with issues now had very long work days. I think it's messed up our carcadium rhythm

[Rebecca Dale]

I forgot to mention as well that difficulty in falling asleep in Chinese Medicine is caused by something known as "Blood Deficiency". It is similar to anaemia but has a much wider application than simply "iron in the Blood". Because you are a woman and loose blood every month, you will be prone to blood deficiency - some are more susceptible than others. If you are a vegetarian or don't eat much red meat, this will exacerbate the problem. Eat a diet with plenty of wholegrains (e.g. wholegrain rice, quinoa, pearl barley etc.), a few good portions of quality red meat per week, plenty of dark leafy green vegetables (e.g. spinach). Also cooking soups and stews with the bone of an animal is also a good way to build up blood.

Blood deficiency can also cause symptoms such as: dull headaches, floaters (dots in the eyes), scanty periods, anxiety, poor memory, constipation. Without consulting with you, I wouldn't know for sure what the problem is (I am a qualified acupuncturist). However, difficulty falling asleep is a cardinal blood deficiency problem (also causes tiredness too).

In addition, I have found sleep hypnosis CDs incredibly effective at enabling me to drop off to sleep at night. I use Paul McKenna's Sleep Like a Log CD, but there are many out there to choose from.

What have you got to loose?