[Health] Some support for severe fatigue..

[tstburn]

Hello everyone, I am a 61 year old woman who was recently diagnosed with sleep apnea and is really needing some motivation in getting through this. Ever since early June of this year, I have been getting perpetually more and more fatigued, up to the point of recently being bed-bound and unable to leave bed without feeling horrible. I used to be able to go on walks, which I can no longer do. I can't go grocery shopping, I can't do anything I used to be able to do. I just have such horrible fatigue that it almost makes anything impossible. I was so distraught, until my sleep study results returned and showed that I had moderate Obstructive Sleep Apnea. After researching, it shows that one of the key symptoms of OSA is fatigue. I recently bought a APAP machine and was just looking for some motivation and some questions I had. I had an average of 11-17 events per hour, and I just started using my APAP machine last night, and got it down to 3 events per hour with the machine on my first try. I don't feel any better though, I am still severely fatigued. Is this normal for it to take a while for the fatigue from sleep apnea to go away after you start apap therapy?

As well, has anyone else ever experienced fatigue that gets worse after you eat food? My fatigue is almost always horrible, but I notice that it can get way worse after I eat a meal.

Also, since I've been bedbound in a dark room for nearly 2-3 months from horrible fatigue, is it normal to have like, overstimulation easily? I eat overwhelmed by so much. Even simple TV shows are too much for my brain to handle in my current state. Has anyone else experienced this with sleep apnea? My fatigue is usually the worst DIRECTLY after I wake up as well, if that makes any difference.

Has anyone else experienced horrible fatigue from OSA? Like enough fatigue to keep you bedbound? I could really use some moral support here. I'm so scared that my APAP machine won't cure me and there's something else wrong, but people keep telling me that OSA can cause severe fatigue, so I'm really hoping that that's all this is and that the machine will cure me, but when I woke up today after using it and not feeling any better, it really scared me. Does it normally take a while for the CPAP/APAP machine to make you go back to normal?

[GuppyDRV]

Hello,

And yes I believe things will get better. I'm a recent, 6 month, user and am not a technical expert but have found many incredible people here who always seem willing to help. It took me three weeks of frustration until I finally managed to sleep throughout the night. Oh...and four different masks until I found one that I liked and could live with.

It sounds like you might have broken that night sleep barrier much sooner than I. That's encouraging!!!! Get some numbers up on the site using the Sleepyhead software and I'm sure someone will get you going in the right direction. I've learned even small adjustments can have an tremendous impact. I'm still adjusting but moving in the right direction. I know you will as well.

Best of luck and keep your spirits positive as help is nearby.

GuppyDRV

[DeepBreathing]

G'day tstburn. Welcome to Apnea Board.

Sleep apnea can certainly induce fatigue, though of course we're not in a position to rule out any other causes. Have you had a thorough blood check done for things like vitamin deficiency, thyroid function etc?

Some people experience an immediate fantastic improvement with CPAP treatment, but for most it's a more gradual process. It takes a while for your body to get accustomed to this new way of breathing with a plastic alien strapped to your face blowing air up your nose! So give it a little time and things should improve. Your improvement to an AHI of 3 on the first night is already a tremendous achievement - congratulations!

Although your AHI is greatly improved that's not the whole story. As GuppyDRV mentioned, small adjustments can make a big difference to the effectiveness of your treatment. This is where the data comes in... We need to see a lot more detail to offer any advice on optimising the treatment. First, can you fill out your profile so we know exactly what type of machine and mask you're using? Second, download and install the #SleepyHead software. This will allow you to see in great detail exactly what's happening during your sleep. Then if you can post the charts here, we will be able to identify any changes that might improve things for you. Although your AHI is greatly improved that's not the whole story.

[tstburn]

Thank you for your replies everyone, I really do appreciate the help. I'm just so frustrated with this fatigue that it is driving me crazy, I hate being bedbound and not able to do anything I enjoy.

@DeepBreathing I have seen my doctor quite a bit in reference to this fatigue, I've had cts and xrays of nearly every part of my body, and tons and tons of blood tests, everything is always normal or so they tell me. I had to beg my doctor to finally get me a sleep study after nearly 5 months of this suffering and I finally got my results back from Novasom at-home sleep study who diagnosed me with Moderate Sleep Apnea. I guess I just want to know if other's have experienced such bad fatigue with their sleep apnea, as mine is just horrible and I'm scared my CPAP won't help.
I will go ahead and fill out my profile more with more information, and try to set up that Sleepyhead software. I might not be able to set it up until later though as I would have to find a computer with an SD card reader it looks like... I appreciate the help a lot though. If I can just ask one question, is it normal for people with sleep apnea to get really bad fatigue? Just the knowledge that others have suffered similarly to me would help so much as I try to get used to this machine.

[Apnea Infant]

Hi tstburn

Welcome to the forum, really pleased to 'see' you here.

Obstructive Sleep Apnea is an insidious condition which, unlike say- a heart attack which makes itself known immediately or asthma which makes you wheeze and therefore know something is quite wrong, creeps up on you for years and years and can make you feel exactly as you have described. This is however not to deny the seriousness of both conditions mentioned. I did not become bed bound but became a shadow of myself, with a somewhat changed personality, was depressed and negative and could barely walk. Like you, apart from work, I used to spend all other working hours in bed as a result of which the weight piled on. That made me feel bad, I over ate to compensate which piled on more weight and that went on and on.

As my brother had had treatment from CPAP for 10 years, he recognised my frequent night visits to the loo, extreme thirst on awakening, morning headaches and pressed me constantly to get looked at. So I was diagnosed early this year with mild to moderate OSA but like most of us here, we probably had been suffering for a long while before diagnosis.

Your treatment appears to be working with the reduction in AHI. It does, for some of us, take a while to finally dial in appropriate settings to be truly effective but you are going in the right direction.

Hang on in there. Life does improve and like the negative effects of OSA, it was not an strike from the heavens that made me feel instantly better. I knew I was improving when slowly by degrees, I was working more effectively for longer and longer. Just this last week I was extremely busy at work but attended a dinner with some good friends on Friday evening only arriving home an hour past midnight but also met up with a good friend on visit from Oz yesterday. A way of life which OSA destroyed but clearly now am able to return to with CPAP.

[MitchS]

Welcome to Apnea Board, tstburn. You've come to the right place to get your questions answered.

Sleep Apnea disrupts your sleep cycle which can keep you from getting to the deeper stages of sleep that you need. While I was one of the lucky ones that had an almost immediate, drastic improvement in sleep quality, it was almost a year before I started sleeping well enough to fell well rested on awakening. By using my cpap machine every time I sleep, practicing good sleep hygiene and using melatonin to help improve my circadian rythm I was able to go from waking up several times a night, for what I thought were restroom breaks, and only sleeping for around 4 hrs to hardly ever waking up at night and sleeping 7 or more hours a night. By the end of my first year I had started dreaming regularly again, as well.

Cpap therapy takes time, a determination to stick with it, a commitment to using it every time you sleep and practicing good sleep hygiene. As DeepBreathing suggested, by using SleepyHead to monitor your progress and posting charts on the forum for other member to look at you may find ways to improve your treatment.

This the following article by the National Sleep Foundation explains good sleep hygiene and what some of the signs of bad sleep hygiene:

What is sleep hygiene?

Sleep hygiene is a variety of different practices and habits that are necessary to have good nighttime sleep quality and full daytime alertness.

Why is it important to practice good sleep hygiene?

Obtaining healthy sleep is important for both physical and mental health. It can also improve productivity and overall quality of life. Everyone, from children to older adults, can benefit from practicing good sleep habits

How can I improve my sleep hygiene?

One of the most important sleep hygiene practices is to spend an appropriate amount of time asleep in bed, not too little or too excessive. Sleep needs vary across ages and are especially impacted by lifestyle and health. However, there are recommendations that can provide guidance on how much sleep you need generally. Other good sleep hygiene practices include:

• Limiting daytime naps to 30 minutes.  Napping does not make up for inadequate nighttime sleep. However, a short nap of 20-30 minutes can help to improve mood, alertness and performance. 
  
• Avoiding stimulants such as  caffeine and nicotine close to bedtime.  And when it comes to alcohol, moderation is key 4. While alcohol is well-known to help you fall asleep faster, too much close to bedtime can disrupt sleep in the second half of the night as the body begins to process the alcohol.   
  
• Exercising to promote good quality sleep.  As little as 10 minutes of aerobic exercise, such as walking or cycling, can drastically improve nighttime sleep quality.  For the best night’s sleep, most people should avoid strenuous workouts close to bedtime. However, the effect of intense nighttime exercise on sleep differs from person to person, so find out what works best for you.  
  
• Steering clear of food that can be disruptive right before sleep.   Heavy or rich foods, fatty or fried meals, spicy dishes, citrus fruits, and carbonated drinks can trigger indigestion for some people. When this occurs close to bedtime, it can lead to painful heartburn that disrupts sleep.
  
• Ensuring adequate exposure to natural light.  This is particularly important for individuals who may not venture outside frequently. Exposure to sunlight during the day, as well as darkness at night, helps to maintain a healthy sleep-wake cycle.
  
• Establishing a regular relaxing bedtime routine.  A regular nightly routine helps the body recognize that it is bedtime. This could include taking warm shower or bath, reading a book, or light stretches. When possible, try to avoid emotionally upsetting conversations and activities before attempting to sleep.
  
• Making sure that the sleep environment is pleasant.  Mattress and pillows should be comfortable. The bedroom should be cool – between 60 and 67 degrees – for optimal sleep. Bright light from lamps, cell phone and TV screens can make it difficult to fall asleep4, so turn those light off or adjust them when possible. Consider using blackout curtains, eye shades, ear plugs, "white noise" machines, humidifiers, fans and other devices that can make the bedroom more relaxing.
  

What are signs of poor sleep hygiene?

Frequent sleep disturbances and daytime sleepiness are the most telling signs of poor sleep hygiene. In addition, if you're taking too long to fall asleep, you should consider evaluating your sleep routine and revising your bedtime habits. Just a few simple changes can make the difference between a good night’s sleep and night spent tossing and turning.

[Sleep2Snore]

I had an average of 11-17 events per hour, and I just started using my APAP machine last night, and got it down to 3 events per hour with the machine on my first try.

Well done on doing that, not everyone manages it so well.

I don't feel any better though, I am still severely fatigued. Is this normal for it to take a while for the fatigue from sleep apnea to go away after you start apap therapy?

It can take some people quite a while to get rid of the fatigue, however, it should slowly improve if you use the machine every time you sleep (If you nap during the day, use it then as well) and hopefully you will improve over time.

As well, has anyone else ever experienced fatigue that gets worse after you eat food?

This is a well known effect It has a name, but for the life of me I can't remember what it is called.  When you eat (or at least a lot of older people) will feel a bit tired, it is just your body dealing with the food ans there is no need for you to be active to hunt food anymore, so your body relaxes.
You will feel fatigued for a while, but if yo are using your machine every night and for as long as you can, it will improve.
I trust your doctor has done all the usual thyroid and blood tests to rule out anything else that might be going on?
You should not feel worse in the mornings though, not if you are using the machine all night.

AHHH!  Serves me right for not noticing your other post!  

[DanGagner]

Throwing this out.... don't take it as if I'm anyone who knows anything.

My older sister had grown more and more fatigued over a period of time. She chalked it up to finally feeling her age. Her doctor ordered an EKG and they found that her heart was skipping beats periodically, a very common thing as I understand it. The net affect was growing fatigue. She has a healthy heart and is a healthy person. It's just that the node in her atrium wasn't firing correctly. She had an outpatient insertion of a pacemaker and she left the hospital in the afternoon feeling like her fatigue was totally gone.

The symptoms mimic a sort of tiredness like anemia.

After having an operation in my throat because I had an AHI of around 60. I felt so much better. But my AHI was still 15-19. Still. I felt a bit fatigued but 'cured' compared to how I felt before. My apap machine has gotten that down to below 5 and I really notice the difference. Everyone is different but if you're AHI is around 3 now, I'd think you'd feel fairly good.

Again listen more to the people on this board who've been at this awhile. I'm just chiming in my 2 cents.

[trish6hundred]

Hi tstburn,
WELCOME! to the forum.!
It can take a while be fore you notice improvement, but it sounds like you are off to a pretty good start with CPAP therapy, so just stick with it, things will get better over time.
Good luck on your CPAP journey, hang in there for more responses to your post.

[Sleep2Snore]

Hi tstburn,

I see your pressure is set to go from 4 to 20, that is a big jump the machine and yourself has to cope with.
Do you know what pressure your machine gets up to? 
I would guess it would be around 12 to 14, but that is just a guess.
If your machine starts at 4, it as a long way to build up pressure, this pressure rise can disturb your sleep quite a bit.
If it is disturbing your sleep, it can affect you a lot without you noticing, however, it is like Sleep Apnea, your body notices.
It would be better for you and your treatment if the machines low pressure was a bit closer to the pressure you require, it is also a bit more comfortable for you. 
If you get up the pressure scale a bit you might need to turn on the EPR to help you breath out, but this is a personal choice.