01-06-2015, 10:20 PM
Good evening, fellow sleepyheads!
This is my first post to this forum. The reason for my post here is simple: I've been suffering from poor sleep for over a decade now and I'm looking for some help in figuring out what to do next in my search for solutions.
I'll try to keep this simple.
I am 31 years old. At about age 19 or so, I started experiencing excessive daytime sleepiness (EDS), and have continued to experience that problem nearly every day since that time.
I have been diagnosed with low testosterone and low cortisol. I've been treated for these and the lab tests show that the treatment is working in so far as keeping these hormones at optimal levels.
I had another doctor who helped me feel somewhat better with herbal treatments for suspected infections. This seemed to help some, but didn't make me 100% better.
In spite of my best efforts, and in spite of the fact that I otherwise have an wonderfully enviable life, my EDS continues unabated. I could enjoy a meal at a fine restaurant and return home feeling like "I'm just barely surviving!"
I've been discouraged by friends and family from seeking treatment. "Everyone is tired!", they tell me. B***s***, not like this, they aren't! If I were sleeping well, I wouldn't spend every minute of every day trying to ignore the urge to close my eyes!
I have monitored my sleep with a "Zeo" device. I don't know how accurate it is, but it tells me that I get very little slow-wave sleep for some reason.
I've had a few sleep studies done in 2014. I had to have the studies interpretted by two different doctors, and was finally diagnosed with a mild case of upper airway resistance syndrome (UARS). I'm told that my RDI is 12 and my AHI is 3. I am rather thin, so I didn't fit the profile of a sleep apnea sufferer.
I've been prescribed a Resmed S9 Autoset CPAP and I've used it for a few months, but I'm not seeing the results I want. As a matter of fact, I can't tell any difference at all in terms of how I feel.
My sleep specialist wants me to go for another endocrine evaluation. I think that this is likely a waste of time. I've had my testosterone, cortisol, growth hormone, and thyroid extensively tested and I've received treatment for low T and low C. What else could there be to do?
My sleep specialist is also talking about the possibility of mental illness, which to me is just a way of getting rid of a difficult patient by passing him off to a psychiatrist! If I'm going crazy, it's because I can't sleep well, not the other way around!
I've been thinking about going to Dr Barry Krakow for another opinion about my sleep. Here's why: I've read his book "Sound Sleep Sound Mind". When I finished the book, I felt like I had read a book that was written personally about me and for me! It's like I may as well go into his office and call him "Barry" because he is more intimately familiar with me than any of my friends in spite of the fact that we've never seen each other! I get the feeling that he has a different way of looking at things and he has a way of reading between the lines when it comes to sleep studies. After all, many doctors seem as if they are treating the test, rather than a sick patient!
Based on the above paragraphs, I am asking for complete strangers on the internet to try to interpret my unique situation and give me sound advice :-) Okay, just kidding; I realize that there are limits to giving advice on the internet, but I wanted to post this and see if anyone here has any interesting ideas about how to handle this situation.
I'm sick and tired of being sick and tired!
What does your pressure do during the night?
Try increasing your minimum pressure and seeing how you feel.
Get the free SleepyHead software here
for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
WELCOME! to the forum.!
I'm sorry you are having such a rough time of things.
Hang in there for more responses to your post and much success to you in getting your sleep and other health issues straightened out.
Why were you prescribed CPAP? Did they do a later sleep study or was it based on the one you quote, or just speculation for your sleepiness?
Do you use the machine 100% of the time when you sleep? If not, start.
Are you actively monitoring you data with SleepyHead to ensure you are getting effective treatment (low AHI) and keeping the leaks down (well under 24)? If not, do that and post results for someone here to interpret.
How long have you been using the machine (100% of the time)?
It can takes weeks or even months of EFFECTIVE treatment before you feel significant results. (Some people feel better pretty much right away, some take longer.
Some people, like me, don't even feel bad to start with so really don't get much improvement in this area -- it's more about ENJOYING better sleep and long term system health for me.)
If you need CPAP, you really want to use it ALL OF THE TIME and you really want to ensure the treatment is being effectively delivered (all of the time.)
Sleep study AHI: 49 RDI: 60 -- APAP 10-11 w/AHI: 1.5 avg for 7-days (up due likely to hip replacement recovery)
"We can all breathe together or we will all suffocate alone."
Thanks for promoting your book here, Barry.
Not being sarcastic...it might have been a little surreptitious and calculated for you to do that, especially IF you created a fictitious poster with fictitious issues here to do that, but in this case it appears that the book might be worth reading. I'll try the "look inside" preview on Amazon first.
Thanks for the responses, everyone!
I have been participating in several of the Facebook sleep disorder support groups. The problem I have is that it seems that everyone on these groups either has a clear-cut case of sleep apnea, narcolepsy, or some other readily diagnosable illness. As someone who suffers from poor sleep and only has a relatively minor diagnosed case of UARS, I find it difficult to find answers on these groups, so I thought I would try here.
Let me start with you, Tyrone. First of all, I am a real sleep-disorder patient. I am not "Barry", nor do I have any relationship with him. For many years, I have been extremely frustrated that my doctors either refuse to take my symptoms seriously, offer minimally effective treatments, or just don't have any clue what to do. As for Barry Krakow, I first heard about him on the Facebook groups. I read his book and found his description of sleep-disordered breathing to be the best description of my illness that I've ever read in a book. I also get the impression that he has a keen attention to detail. His book also features quite a number of pages about how mental and emotional health affects sleep. Strikingly absent, though, is any serious discussion of narcolepsy. Also, in spite of the excellent content of his book, I felt that it could have been presented better.
Next, I will answer the question about what the machine pressure does at night. At first, the machine was jumping to the maximum pressure almost as soon as I went to sleep. As a matter of fact, this tended to jolt me awake; taking sedative medications helps somewhat with this, but not 100%. What seems to help more is to sleep on my side, but this is not comfortable for me and I sometimes roll back into a supine position. With this, I seem to sleep a little bit better and have less mass leakage and flow limitation, *but* my Zeo unit indicates that I'm still getting only a tiny amount of slow-wave sleep. (I don't know how accurate it is)
This week, I've been mostly sleeping on my side, and Sleepyhead reports minimal flow limitations and AHI < 2. This morning, however, I woke up feeling crappy and with AHI 5.6 for the night. For about the last 90 minutes of my sleep this morning, I turned on my back and had AHI of almost 40 according to Sleepyhead! I have been making every effort to use CPAP every night. Lately, I've been using my CPAP well, using both sedative medications (which I understand are *not* a long-term solution) along with sleeping on my side. In spite of this, I'm not feeling that much better, but I will give it at least a few more months.
Interesting idea about raising the lower pressure; I may look into that.
01-10-2015, 12:17 PM
(This post was last modified: 01-10-2015, 12:23 PM by TyroneShoes.)
Whatever you say, Barr....er, the_mad_man. Certainly no offense was meant.
We should pretend that just didn't happen. Quite seriously. I, and everyone else, should proceed as if you are not him. Does look like an interesting book, tho.
Everyone, including me, ignore my theory, please. Seriously. It is not relevant at all to the issue this person presents. Even if we are just playing along (and we assume we are not) going with the premise here makes sense. The OP is intelligent, discerning, concerned, and presents a very interesting case study. He might not be Barry Krakow, but he seems as if he has the wherewithal to be someone like him, and even might have a book of his own in him some day.
OK, with that behind us, I find it interesting if not alarming that a positional change could so dramatically change AHI, even under treatment. That seems like something to look at.
I also am concerned about the "sedatives". Typically, anything you use to help you sleep increases the preponderance for sleep events (not including simple OTC pain relievers), so that might be shooting yourself in your own foot. But are you taking them to help you sleep? Are these medications for the other issues you mention and have you closely looked at the side-effects that might elevate sleep events? What does "Barry", or your other doctors, think of all of that?
I've said this many times before, but associating how you feel or certain symptoms with how well the xPAP therapy is progressing might be a distraction rather than all that closely linked. Generally speaking, get the AHI down low and this means that (while treated) you technically no longer have sleep apnea, so that can't cause symptoms anymore, other than holdover symptoms that may take some time to diminish.
Since AHI is so clearly an indicator of how well you are doing, if you concentrate on getting that down low and staying with it for a few months, possibly longer, this pretty much removes SA as being the cause of whatever you are still experiencing.
That is good because it simplifies the complexity of your issues, and it ensures that you are getting needed therapy that is working, at least for the OSA. Then it is easier to move forward and solve all of the rest.
There is often a connection between raising the starting APAP pressure (or fixed CPAP pressure) and eliminating more OSA events. That and EPR settings also may increase CA events. So it is important to get both starting and max pressure settings where they are optimal for you. That the pressure rises "almost immediately" might be an indicator that the starting pressure is too low. The automatic algorithm in the APAP might actually be smart enough to realize this and is raising your pressure accordingly. You are not the first to post that problem here.
You seem like a very bright person, and you have only two posts here so far, so I encourage you to investigate these issues further (although it doesn't seem like you need much encouragement). There is a lot to be learned here on this forum and on others, even if we are mostly random invisible anonymous posters. There is still a lot of value in that. So, use that motivation, and go for it. Folks who know will help all that they can.
First thing I think of, whoever the OP is doesn't matter to me, is that if you have not been on treatment very long and have had UARS for a long time, it causes havoc in the body and that havoc is not going to be fixed in a few months. Some people notice improvement immediately and some don't notice a lot of improvement for a while. It depends on how much "damage" was caused by not being treated for this condition, or any condition for that matter. Sleep deprivation can cause "mental health issues" just as "mental health issues" can cause a myriad of issues. If you are really concerned about "mental health issues", perhaps you should start with a neurologist or a very good internal med doc that would do a complete workup that includes every part of your body, including your brain. There are a lot of medical conditions that can cause poor sleep quality, mental health issues, etc. especially if you have been sleep deprived for a long time.
I really like what me50 had to say about getting checked out thoroughly by an internal medicine/neurologist.
Since you mentioned in your first post that your sleep issues have been ongoing for TEN YEARS a LOT of damage can/will have happened during that time. It will take time for the body to heal, if it ever does heal completely; some damage might not be healed by XPAP treatment.
Please remember that often the way we "feel" is not a good "test" for effective treatment - numbers can be very helpful for noting progress and adjusting therapy.
Please do not stop using your APAP and use it ANYTIME you do take a nap, even for 10-15 minutes.
Evpraxia in the Pacific Northwest USA
Diagnosed: 44 AHI when supine, O2 down to 82%
Treated since 20 Sept 2014:: 0.7 AHI, Settings 7-15, EPR on Full Time at Level 3
Better living through CPAP/APAP machines!
You describe symptoms from your sleep along with hints from your doctor about a possible infection. Have you considered the possibility that you have a tick-transmitted bacterial infection in the body. I am a member of several FB groups dealing with both Lyme disease and sleep disorders. Many writers with sleep disorders describing similar symptoms, and many writers with Lyme describe sleep problems. But these two groups of people with various problems seem not to know the other group problems.
I suspect myself to sleep problems come from an infection 24 years earlier, with facial paralysis, deafness, pain, headache and more.
And the conclusion I have started to draw from all these stories from writers, is that many people with sleep problems also have problems with things that can be attributed to infections.
I believe infections are the cause of many problems, including sleep problems.
Bacteria eat the myelin covering of the nerve fibers which creates problems.