still tired? depressed?

[Guest]

Just going to say this up front - the machine is working. I have a card reader and software. My AHI is usually low like 0.5 every night. Sometimes it's 1.3 or 1.0, but mostly it's below 1.0. The mask isn't leaking and it fits comfortably.

So does anyone here either have other sleep disorders or do you still have excessive sleepiness even after adequate treatment with the CPAP?

This is happening to me and I feel so frustrated and depressed. I had such high hopes for this CPAP machine (I've been using it about 8 months now).

I have days where I cannot keep awake at all and my body feels heavy, like it's made of lead. Most other days I feel ok when I get up then I suddenly get very sleepy. I take a nap, feel ok for a couple hours then feel extremely sleepy again. I can fight it and fight it but does no good. Caffeine does nothing at all. I've taken provigil and it made me sick. I've tried Ritalin with same effect. Now my blood pressure is too high for stimulants.

My sleep doctor wants me to have a daytime sleep study to see if I have narcolepsy, but he says that some people still feel excessively sleepy even when the CPAP is working well and nobody knows why this is. I'm at my wits end with this. I'm very depressed and thinking of killing myself because I can't keep a job or finish school or anything. I thought I'd finally have a life after treating severe obstructive apnea. Well, it's treated but I'm still getting sleep attacks all day long. Only now I know the difference between the way I mostly feel and how I SHOULD feel. I've had some days where I feel so amazingly rested and life is actually EASY and I can get things done. But those days are fewer than not.

I wonder if there is any hope or if I should just give up now? Right after I have a nap...

[Ms Piggy]

Hi, sorry to hear of your problems. Someone with more experience than I have will give you a better answer than I can.
I just want to say you have my sympathy and to tell you to hang in there, don't give up trying to find a solution.

[nightjar]

Oh, I wish I had numbers like that each night. . . .

But from the sounds of it, you might want to talk to someone other than your sleep doctor. A sleep doctor may be the best in the world, but that doesn't mean he or she will be able to diagnose depression or know how to treat it.

Depression can lead to all sorts of things, including tiredness and weariness. I've been there, and I expect I'm not the only one on this forum who has. Coupled with sleep problems . . . well, it's not a good mix.

But your sleep numbers are fine, and I'm just thinking you might want to talk to someone who can help you with your depression. Maybe I'm wrong, but that might be the culprit here rather than sleep apnea.

The forum's a good place for support, though, and I hope you find the folks and advice here helpful.

Let us know how things go, okay?

nath

[WearyOne]

Guest, have you had a complete physical and a lot of blood work done? There are many problems that can cause fatigue, sleepiness, depression, etc. Low iron/ferritin, and thyroid issues are examples. I know low thyroid can can muscle heaviness or weakness, severe exhaustion, sleepiness, mood changes, just to name a few symptoms.

And some people have food issues that don't show up like rashes or stomach problems, but actually can make the whole body exhausted (celiac disease is one).

You may have already covered all the bases, but just tossing out some other ideas besides sleep issues because sometimes we get stuck in one particular area and forget that there could be more than one issue at play.

Please keep posting and letting us know how you're doing. Keep bugging the doctors until you've covered all angles, not just sleep.

Pam

[Guest]

I had blood tests done in the spring. I have a full physical scheduled next month. The only other issue is my blood pressure is a bit higher than it should be. This excessive sleepiness is a life-long problem for me now, it started when I was a young teenager. I thought after getting the sleep study and finding I have severe apnea then I'd finally found the answer to my life failure due to being so tired. But all it's really done is give me a few good days. I still have sleep attacks throughout the day. I want to live my life, but I can't. This excessive sleepiness is extremely disabling. Oh, and, I wouldn't be depressed if I could stay awake and actually live my life.

[Julie]

It could be possible that you have chronic fatigue syndrome incidentally with OSA, but if you've felt this way all your life, I would want to look into other physical issues or something like depression - people can be chronically depressed forever if they never get treated.

[WearyOne]

I had blood tests done in the spring. I have a full physical scheduled next month. The only other issue is my blood pressure is a bit higher than it should be. This excessive sleepiness is a life-long problem for me now, it started when I was a young teenager. I thought after getting the sleep study and finding I have severe apnea then I'd finally found the answer to my life failure due to being so tired. But all it's really done is give me a few good days. I still have sleep attacks throughout the day. I want to live my life, but I can't. This excessive sleepiness is extremely disabling. Oh, and, I wouldn't be depressed if I could stay awake and actually live my life.

I understand completely. Sleep issues can cause major depression and anxiety, which can cause more sleep issues, which can cause more depression and anxiety...it can become an endless circle.

I know you've probably check this out already, but do you have trouble getting to sleep until about 1 or 2 a.m. each night? Or do you find that you need to go to bed later each night in order to keep from lying awake for several hours? These questions relate to your teenage years as well. My son started having a sleep issue in his early teens that had to do with delayed sleep phase syndrome. Many times people that have this, it starts around the time they hit puberty (early teens). Since you mentioned you'd had this since early teens, it reminded me of my son's problem.

The test for narcolepsy sounds like a good idea to me.

I still have issues where I feel like I've just got to go to sleep in the middle of the day, but I have some other issues at play, plus I KNOW I don't get enough sleep because I don't go to bed early enough. I work from home, so I can indulge that if I really need to. But it can be really miserable for me sometimes trying to get a typing project out for a client and I can't keep my eyes open.

Pam

[cflame1]

Ok... just read it again and my question's already been answered... so I removed it.

[Captain_Midnight]

Guest - -

I'm not a physician, and medical-related posts from folks not known to you over the net should be viewed with extreme caution and skepticism.

Disclaimer out of the way, I'm wondering if you might want a thorough thyroid evaluation, even if you have had them previously.

There are several sites that describe your symptoms and relate them to hypothyroidism. Below are a couple (the second of which also relates hypothyroidism to sleep apnea.) Consider that one of the problems with hypothyroidism is that it's difficult to diagnose (see the quote from the first site). So, it might take some extra tenacity to get a second opinion which would either confirm a thyroid issue, or at least rule it out.

Here are the sites for your consideration"


http://www.lef.org/protocols/metabolic_ ... ion_01.htm

From this excellent, and quite thorough review, here's a quote regarding some current weaknesses in testing...

The most common test used to measure thyroid function is determination of thyroid-stimulating hormone (TSH) levels. TSH is produced by the pituitary gland; it stimulates the thyroid gland to secrete T3 and T4. TSH is elevated in response to low thyroid hormone levels, while TSH levels are low in response to elevated thyroid hormone levels.

While this test is commonly used, and recent improvements have made it more sensitive, there is a good chance that the standard reference ranges used by many laboratories are so wide that many people with subclinical hypothyroidism are not correctly diagnosed. This means that potentially tens of thousands of people suffering from depression, heart disease, or weight gain may be unaware that their conditions are actually due to low thyroid hormone.

This next site is much briefer, but it does describe the OSA/hypothyroid connection.

http://thyroid.about.com/cs/fatigueener ... austed.htm

Your xPAP therapeutic results certainly look encouraging. Good luck with this, and keep on keeping on!


.

[ca_hosehead]

Believe me, I feel your pain. My AHI is quite low, 2.0 or less and I often feel sleepy during the day and have frequent headaches. It is something I am continuing to work on with some progress, but not yet total success.

The suggestions here are good as it could be "something else", but I think you are at a bit of a crossroads here. If your problems are sleep-related then that dictates one course of action, if it is not sleep-related then you need to go another way entirely. I think it is important to get a answer to the question, "Do I feel like hell because I am sleeping poorly?"

First work out a way to rank how you feel on a day-to-day basis. You could use the Epworth Sleepiness scale if you think it works for you:

http://www.stanford.edu/~dement/epworth.html

What you need is a way to put a number on how you feel. You could just go from 1 to 10 and determine what the numbers mean to you. High numbers should mean you feel worse.

You don't have a profile here and we don't know what kind a machine you have. If you set that up people can do a better job of helping you.

Start printing out your reports every day for a month. Mark your sleep number on the report. If there are other factors effecting sleep mark those down as well. After a month do a graph. Use Excel or just buy some graph paper and mark the dots. Since sleep and the human body is a complex system the match up won't be one-to-one but if your problems are sleep-related then you'll see that as the AHI travels up the sleep number generally goes up with it.

Once you have established that sleep quality and the way you feel are closely related, then you know where to focus your efforts.

[jnk]

And in the meantime, you DO need to talk to someone about your depression and extreme thoughts. Please.

[kteague]

I agree with the others who are encouraging you to have an in-depth medical evaluation for possible other causes. Did your sleep study happen to mention anything about limb movements? Periodic Limb Movement Disorder can be a real sleep buster. I have both that and OSA. Have you discussed with your doctor a need for a followup study using your familiar mask and current settings to see what else might show up? If a test for narcolepsy is ordered, it will be during the day following a night in the sleep lab. If the nighttime study shows normal sleep stages with few arousals, then a possibility of narcolepsy might be entertained if other medical causes have already been ruled out.

Because there are so many possible contributing factors to how you feel, please know there is hope that you will find answers and feel better. Would be a shame to give up just short of that. Please don't just suffer in silence. Tell your doctor(s) you need answers and to not stop looking till they find them. While depression may be a factor, I wouldn't recommend going straight to treatment for that alone and bypassing all the other things that must be ruled out. You need a comprehensive approach. But it probably wouldn't hurt to let them give you something to help you through this time. When a doctor mentioned depression to me, I was adamant I was not depressed. I was so afraid once I gave in to it that they would stop looking for what was really making me feel so bad. Your longstanding troubles have you thinking some pretty desperate thoughts. If you can be helped with that while you are looking for answers, maybe it's worth considering. I probably should have. Please keep us informed of your progress.

[Guest]

I know people here cannot answer whether I have a certain sleep disorder or whatever other health problem. I'm sick of hearing about depression, that's a garbage can diagnosis when the doctors can't figure out what is wrong. I just want to know whether others here continue to have excessive daytime sleepiness even after the CPAP is working well. My overnight sleep study was normal besides the severe apnea. I would think if I had narcolepsy or leg movements it would show up on that.

[OutaSync]

You are not the only one who is having "acceptable treatment" and still feels very tired and sleepy during the day. I don't know, yet, what is causing mine, but at the age of 53, I'm too young to be feeling as though my life is nearly over because I can't keep up with normal activities. Your theory about depression may very well be true. Doctors do tend to write a prescription for depression just to get you out of the office in the allotted 5 minutes per patient.
I recently bought a pulse oximeter, and yesterday, since I was feeling so poorly, gave it a run during the day while mostly resting. Turns out I have low oxygen spells during the day, as well as during the night.

Over the years when I had described my symptoms ( heart puonding, head pounding, chest pains, sweating) my doctors had labeled them anxiety attacks and given me lexapro. My symptoms never got better and after I learned from reading this forum that lexapro can actually interfere with sleep, I weaned myself off.

I don't know if this will help you, but thought you should know that you are not alone. For some of us, there are other things going on besides OSA. Please don't give up the treatment. It actually is helping us be more oxygenated while we look for more answers.

Please register and keep coming back to let us know how you are doing.
Bev

[kteague]

You're right that too often depression is where doctors land when they don't know why one has certain symptoms. Makes it bad for any who do have depression.

About your study, if you had limb movements, yes, there would probably be some hint of it in your study. Narcolepsy would not necessarily be picked up unless something was real unusual with your sleep architecture. It's the excessive sleepiness even after getting a good night's sleep along with other symptoms that generally indicate narcolepsy.

My OSA treatment is working just fine, but my sleep is still not restful, largely because of limb movements. I still have limited energy, nap often, and struggle with memory issues. The upside to this is that before cpap treatment I was barely beyond alive, dozed in and out around the clock, and could barely complete a thought. CPAP gave me what I needed to cope with the other issues and to feel closer to living than when I was the living dead. CPAP didn't solve everything, but it solved what it could. Now I'm working on the other issues. I wouldn't have given a nickle for my life 3 years ago, but now I enjoy it and I'm hopeful for continued strides. Sure hope you see enough progress to give you hope for more.