No slow wave/restorative sleep

Just reviewed results of my third sleep study. I only have some obstructive apneas, but I do have frequent hypopneas. According to my sleep specialist, data shows CPAP to be very effective for me. All the numbers look great. My treatment is a success! Actually, it's done very, very little to make me feel better after nearly 2 years of use. The most significant issue, in my opinion, was completely swept under the rug by the doctor--I get no restorative sleep!

I've have been having these unrelenting issues for over 5 years:

Historically, treatment regimens have been primarily targeted to reduce the pain complaints of patients with FMS. However, an Outcome Measures in Rheumatology (OMERACT) Delphi exercise identified other aspects of FMS that occur in over 50% of the affected patients [Mease et al. 2008]. These include fatigue, sleep disturbance, poor concentration, stiffness, disorganized thinking, tenderness, depression and poor memory. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3382678/ )

I made sure to weave discussion of the issues into the conversation before I left. I reminded him that I have no life quality despite 'successful CPAP treatment" and explained to him what I've been reading about slow wave sleep and how sleep issues are prevalent in the fibromyalgia population (which I was diagnosed with a few years ago). Then I asked him for Xyrem, as I've been reading about it on the fibro forums as several report how it's been a godsend in their life.

He gasped. He said Xyrem is a DANGEROUS drug and he does not even prescribe it to his narcolepsy patients. (Xyrem is FDA approved for narcolepsy and cataplexy but not fibromyalgia).
He also said there is NO research that is helps fibromyalgia patients and that he would know because he monitors the research.(I've found evidence after a quick search, such as: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3371223/ but I am discovering there is much more evidence out there). I told him I have read up on Xyrem and it is no more dangerous than many of the useless drugs that I've already been prescribed for years on end. He got angry with me and started acting strangely. After he seemed to get back to normal, he asked if I wanted Provigil. I have tried Provigil and Dexadrine in the past and neither helped-they made me more tired. (Dexadrine did help my mood but I still felt worse overall.)

I don't understand this doctor's rationale. I know the DEA makes prescribing it a pain, but what's the point of not letting me try it when I've tried dozens of antidepressants and sleeping medications and always felt worse. What's the point when I've had no life for over 5 years. I literally can manage only to get to work every day, laundry and dishes on weekends. Mostly lay in bed and stare at the ceiling. It's not just the fatigue, I have unrelenting lack of motivation (usually considered depression). And the other symptoms I've quoted above. I can't even read a book or watch TV because I no longer have concentration. This started in my late 30s but is slowly getting worse. It's as if my brain is damaged.

And lack of slow wave sleep is thought to cause growth hormone deficiency which is thought to be similar to fibro:

Growth hormone deficiency in adults has a clinical picture that in many ways is similar to the symptom complex seen in patients with FMS: low energy, poor general health, reduced exercise tolerance, and impaired mood [Cuneo et al. 1992].

CLINICAL FEATURES OF GROWTH HORMONE DEFICIENCY

The symptomology can be discussed under neuropsychiatric-cognitive, cardiac, metabolic, muscular, and bone symptoms, such as:

•Changes in memory, processing speed and attention
•Lack of well-being
•Depression
•Anxiety
•Social isolation
•Fatigue
•Lack of strength
•Fibromyalgia syndrome
•Neuromuscular dysfunction
•Central adiposity
•Decreased muscle mass
•Decreased bone density
•Impaired cardiac function
•Decreased insulin sensitivity
•Accelerated atherogenesis with increased carotid intima–media thickness
•Increased low-density lipoprotein
•Prothrombotic state
•Decreased sweating and thermoregulation.[24–32]

I have nearly all the GH symptoms. Growth hormone supplementation seems to be dangerous, and it doesn't make sense to prescribe them if I were to have a deficiency since there is a drug that will allow me to get slow wave sleep to make the hormone myself. Just as it doesn't make sense to prescribe Provigil to people for fatigue when there is a drug that can help them get slow wave sleep thereby eliminating the fatigue. Not that any doctors would ever consider testing my growth hormone anyway, despite having most of the symptoms.

I don't see how Xyrem is any more dangerous than many other drugs that have been prescribed to me for the symptoms i have. I am willing to sign a statement waiving all liability of adverse events from the drug (which are less than other drugs i have taken). I would rather risk dying than continuing to live like this. I've also had painful thoughts that I would rather be dead then live like this anyway. I am the living dead.

Not only that, but one of the main treatments for fibro--Cymbalta--actually make's one's sleep artichitecture worse off. I don't understand why these drugs keep being prescribed to people when they worsen the patient's condition. I feel I have become more and more damaged as a result of these treatments that worsen sleep architecture.

After psychiatry, the specialty of sleep medicine has been my worst experience. I suppose I have to find another doctor as I am not comfortable with the judgment of this sleep specialist. Especially when there are articles on Xyrem for FM, like the one below, after he told me there were NONE. I also don't think my problem is necessarily fibromyalgia, I think it's a slow wave sleep deficiency. Sometimes it's called depression, sometimes it's called fibromyalgia. The only single piece of evidence I have so far is that I get 0% slow wave sleep. There are no other real biomarkers for any of the other conditions. This doc insists he only treats according to evidence. Then why isn't he treating for the evidence shown in my sleep study? he actually told me to go find a fibromyalgia specialist to get treated for the slow wave sleep deficieny. A sleep doctor telling me to go to a fibromyalgia doctor for sleep.

In the meantime, my internist said he'd research Xyrem and we will discuss how to proceed. I am so thankful for him. At this point, it seems to be my only hope.

I know my anger is reflected in my words, but it feels like i'm on a non-stop merryground of misery.

Ocean Blue, I can sympathize. I've been in a similar situation for 8 or 9 years. I won't go into great detail, but like you I suffered from fatigue and lack of slow wave sleep and like you I saw the similarities to Fibro. Also, like you, my Cpap therapy has been successful and I use it continually, but it didn't really help with the fatigue. Incidentally, I also suffer from PLMD.
First, let me say, I think you should change Doctors and find one that is more open to your ideas. It took me five tries to find a Doctor that I was comfortable with and that appreciated the fact that I knew a little something about sleep. (I do have a Zeo to monitor my sleep architecture.) I think a major problem is that sleep is poorly understood - period. After treating the obvious, like OSA or other forms of SDB, most doctors have no where else to go. Especially, since most sleep doctors are pulmonologist. After that, it's primarily a "try this" and see what happens approach. And since that is the case, there is no reason not to try Xyrem or any other drug - and your doctor should work with you on that.
I have tried most of drugs prescribed for Fibro and PLMD, unfortunately I didn't find any that worked. And, as you referenced, many(most) of these drugs actually made my sleep architecture worse. I have not tried Xyrem. I have used Provigil and find it mildly effective in lessening fatigue. Now, just because these drugs didn't work for me, doesn't mean they wouldn't work for you or somebody else. Trial is the only way to know.
You probably have already, but make sure you've had all the blood tests appropriate - another reason to have a doctor that will work with you. You need to know your serum levels of Vitamin D, B12, Ferritin, T3/T4, etc., etc. that could be related to fatigue or underlying disease.
So, what worked for me.

• First: Strict Sleep hygiene and I mean strict. Same bed time every night, cold room, no caffeine, and all the things you find when you google sleep hygiene,
  Diet. A reduction in carbohydrates.
  Supplements. My D3 and B12 were both low.
  Exercise. 40 minutes to one hour of aerobic exercise every day.
  Never failing CPAP.

Doing these things brought my nightly percentage of slow wave sleep from less than 2% to nearly 10 and markedly decreased my fatigue. It isn't gone, but it's better. I will look into Xyrem.
I wish you success, hang in there and find a new doctor (I suggest one just starting out or a Nurse Practitioner)
J

Jay,

Thank you for your thoughtful reply. I am glad to hear you are feeling better and your story gave me a bit of hope.

I do not have the capacity to ensure good sleep hygiene at this point. I can't attend to my daily affairs and don't even open my mail for weeks at a time. I just don't have the motivation to do things I need to do. Kind of like Maslov's hierarchy of needs. I have had a slight improvement from taking Trazadone, which I decided to try after my research as my psychiatrist agreed to let me take it. It's helped keep me stay asleep for 7 hours and supposedly doesn't adversely impact restorative sleep. At least on the Trazadone, my REM sleep is now close to normal. As a result of more sleep from the Trazadone, I've started back into a weekly exercise routine but I must do better. I'm hoping Xyrem would be a catalyst to be able to get into a daily, more vigorous exercise routine and better habits. My immediate plan is to only take it temporarily to help me get my life together. Perhaps after losing weight from quality sleep and daily exercise, I would not need it (or the Trazadone). Feeling better will help me work towards 100% sleep hygiene.

You're right, It looks like I have to find a new doctor. This doctor is so personable and seems so nice, seems to have a great bedside manner, yet I think his clinical judgment is poor. He seems to only be interested in treating patients to match the CPAP numbers, rather than treating to improve health and well-being. The first time I saw him, complaining that CPAP wasn't helping, he spent the entire time of the appointment trying to talk me into doing CBT (I could not afford the copayments if i had the energy or wanted to do this therapy). He did not even try to troubleshoot CPAP issues, did not look at mask fit, leaks, possible machine defects, type of machine, etc. No problem solving, just dealt with me through the lens of CBT. At the end of the appointment, he admitted to me that his wife won't do the CBT either despite having chronic insomnia. This deterred me from treatment for over 6 months. I finally had the courage to go back, telling him that trying to get me to do CBT was analogous to telling a drowning person that they need to learn how to swim. He actually apologized. He is way too focused on evidence-based treatments. I kind of feel arrogant stating this as I am not a doctor, but I feel that clinical guidelines are only meant to be guidelines, not mandatory, set in stone treatment strategies. Whereas this doctor is treating them as if they were the law.

It is really sad that doctors keep prescribing medications that are bad for sleep to the sleep deprived population. I'm especially concerned for our children (see http://www.sciencedaily.com/releases/20 ... 150206.htm ) Many children are now being diagnosed with bipolar, and given antipsychotics. Especially economically disadvantaged children. They are more likely to be prescribed the antipsychotics over more wealthy populations. I think the chronic sleep quality issues I've experienced from taking antidepressants and stimulants for years has brought me to this point. And they cause weight gain on top of everything else.

I do appreciate your advice, and your list on what has helped you. I've read about sleep hygiene and hope to get there someday too.

You certainly seem to have problems that are beyond CPAP treatment. But I have a question about your CPAP treatment in light of these two posts,

OceanBlue wrote:Just reviewed results of my third sleep study. I only have some obstructive apneas, but I do have frequent hypopneas. According to my sleep specialist, data shows CPAP to be very effective for me.

The sleep doc and I have been fiddling with the pressure, settings, and machines for months now.

Are you using Sleepyhead to monitor and control your therapy? Do you know how to analyze the reports and make appropriate adjustments to your CPAP settings and your mask?

Are you using Sleepyhead to monitor and control your therapy? Do you know how to analyze the reports and make appropriate adjustments to your CPAP settings and your mask?

Hi, thanks for asking. No, not using Sleepyhead. Yes, I do analyze the CPAP output data and my doctor does as well. My numbers are near perfect (and AHI is now about 2) so I'm not sure how adjustments will change my fatigue, concentration, etc. I really don't think it's the CPAP at this point. The last sleep study was titration. The tech said I did not go above a need for 7. The Nurse Practitioner analyzed my results and ordered a new pressure change of min 5 max 7 from min 5 max 13. After my doc and I discussed the report, he decided to leave the max at 13. Data over time show that I often need a pressure of 10-11. I dont' have it in front of me. He said if the current max pressure of 13 is working so well, why reduce the max? So we are leaving it the same as it was before despite the new data from the last study.

You certainly seem to have problems that are beyond CPAP treatment.

Right, which is why I am seeking help from a sleep specialist. He's not a CPAP doctor.

Thanks CG, for mentioning SleepyHead. I just kind of assumed she was using it. Ocean, I doubt your doctor is analyzing your CPAP data in more than just a cursory way. Few doctors do. Most just look at the Summary Data, but there is quite a bit of information in the detailed data which may be beneficial. For example, it could show your sleep is disturbed by the type of flow waves generated, yet your AHI is low. AHI low, the doctor is not concerned but fragmented sleep from disturbances leads to non-restorative sleep. What causes the disturbance, if there are any? That's a question that would need to be answered.
You owe it to yourself to get the software and monitor your results. You need to become proactive and take charge of your therapy. You need to learn and practice good sleep hygiene.
I'm just sayin'
J

I'm going to take your advice Jay and get the Sleepy Head software. People have recommended it before and it's been on my to do list. It just really seems like a daunting task right now-figuring out how to install the sd card reader, using the software.

But it doesn't help to hear that I am not doing what I am supposed to do. I honestly know what I need to do. I haven't even filed last year's state taxes, as I didn't have the mental stamina to figure out how to do them (moved to a new state with new regs) so I gave up. My to do list is HUGE. I am overwhelming.

I don't deserve all the blame. I've relied on doctors, continuously seeking help, but had been underdiagnosed and misdiagnosed several times, which led up to becoming a basket case over time. Only because I was lucky enough to get a new internist after switching, who addressed some serious health issues that were previously undiagnosed, have I been able to have the minimal amount of energy needed to start taking more actions. When your drowning, you need someone to throw you a life raft. It's not a good time to learn how to swim. After you recover, then yes, you should learn how to swim to prevent it from happening again.

And yes, I know the sleep hygiene. For example, I got early awakenings for years until I started taking trazadone (got up bet. 2-4 am daily) and often could not get back to sleep. my sleep specialist told me when I can't sleep after awakening early to get out of bed and just sit and do nothing. I honestly struggle to get out of bed to get to work, run late every day if I make it there, misswork when I can't. And can't get out of bed on weekends. To get out of bed to sit in a chair and do nothing till I get sleepy seems like climbing a mountain to me.

sleep is disturbed by the type of flow waves generated

Can you please explain? Also wondering if someone could provide an example how they helped themselves from this data despite having perfect numbers.

What causes the disturbance, if there are any?

What are the possibilities. How would the data patterns shown by this software lead to learning a cause and making the conclusion of knowing what to change?
(might benefit others reading this too).

Jay Aitchsee wrote:I doubt your doctor is analyzing your CPAP data in more than just a cursory way. Few doctors do. Most just look at the Summary Data, but there is quite a bit of information in the detailed data which may be beneficial.

Yup. What doctor has the time or inclination to pore over detailed reports regularly like an educated CPAP user can? None that I know of.

OceanBlue wrote:figuring out how to install the sd card reader

Are you sure your PC doesn't have a built-in SD card reader? Most do.

OceanBlue wrote:I haven't even filed last year's state taxes, as I didn't have the mental stamina to figure out how to do them

Ha! The the IRS Commissioner says the tax code is so complex he has to hire a tax preparer! http://thehill.com/blogs/blog-briefing- ... -own-taxes

OceanBlue wrote:I don't deserve all the blame.

Try not to beat yourself up. It is general knowledge here about how sorry doctors are at diagnosing and treating complicated cases and even simple ones that only need a CPAP prescription.

The patterns of your breathing change with an arousal or near arousal which may not be caused by an apnea. These patterns might be discerned by looking at the flow wave graphs of your breathing. A good example of something that might be found is when these patterns are associated with leaks. Leaks that might not be large enough to register on their own as too large, but never the less are large enough to cause an arousal. The types of events you are having, when you are having them, etc. could also lead information about your quality of sleep.
There are lots of people here that would be willing to help you learn about and manage your therapy. You just have to get started with it. Believe me I know that can be difficult, but you don't have to do it all at once. You can start by filling out the information in your signature- type of equipment, etc. Hint- it's in control panel. Just one step at a time.
J

I have no suggestions for you, but remember that it wasn't that long ago that doctors considered fibromalagia a strictly psychiatric issue. This is mostly because anything that primarily involves women must, therefore, be a psychiatric problem. Heck, my sister's late MIL was sent to a shrink by two different doctors rather than do tests to discover why she had chronic nausea (turns out, she had stage 4 cancer).

I just wanted to add that the sleepyhead data might have some info that can improve your cpap results. It may not solve it all, but it may improve the qulaity of your sleep.

For example, some people have more sleep disturbances with changes in pressure. So, it might be good to try a night at straight 7 instead of 5-7 and see if that helps you sleep better.

Also, several people have reported that they only feel better if they get their ahi down to less than 2 or even less than 1. So, while your number is really good at 2, and the doctor will say it is great. It my not be good enough for YOU. Mine rarely goes above 1.5, so I really don't know if a 2 or 3 would be noticeable for me. But it might be worth trying to get it down to 1 and see if you feel any better.

Another thing to consider is that if you have few events, but long events, you can have a nice ahi, yet still have really bad events. My events are all in the 10-15 second range, but my mom has events over 30 seconds long, some, over 1 minute long. They can also be clustered together so that you go a few hours with no events, but then you have 8 longer events in less than 20 minutes. That could be devastating for your sleep, but still put a low ahi on the screen in the morning.

And I agree about the doctors. They usually look at ahi and hours of use. They rarely look at a typical night of data to see what the pressure is doing, length of events, how they are spaced out, etc.

I doubt your doctor is analyzing your CPAP data in more than just a cursory way. Few doctors do. Most just look at the Summary Data, but there is quite a bit of information in the detailed data which may be beneficial.

Yup. What doctor has the time or inclination to pore over detailed reports regularly like an educated CPAP user can? None that I know of.

Well my doctor chose to talk to me about CBT therapy during an entire visit. He could have been reviewing my clinical symptoms and data, past sleep studies, other health problems, revisit diagnosis, etc. They have nurses, respiratory therapists who could review the data for patients who are not getting effective results from CPAP. If someone is complaining for over a year that CPAP isn't helping, then I think it's their job to review the data and figure out the problem as that is what they are trained and paid to do.

I don't think it's the patient's responsibility to spend wee hours of the night googling, posting on online forums, trying to figure out how to bypass the restriction to the settings menu, etc. Not everyone is computer savvy and not everyone is well enough to do these things. Some of us can barely function.

It took a considerable amount of energy just to get the treatment working. I had to be extremely tenacious and even demanding at times. (example, getting an appropriate mask, incorrect settings on he machine several times, demanding it to be unlocked because of DME and doctor's office not putting it on the correct settings. I can't imagine a really sickly person being able to do that.

Are you sure your PC doesn't have a built-in SD card reader? Most do.

Don't know where in the world it would be, but I will check.

Try not to beat yourself up.

Thanks

A good example of something that might be found is when these patterns are associated with leaks. Leaks that might not be large enough to register on their own as too large, but never the less are large enough to cause an arousal.

My events are all in the 10-15 second range, but my mom has events over 30 seconds long, some, over 1 minute long. They can also be clustered together so that you go a few hours with no events, but then you have 8 longer events in less than 20 minutes. That could be devastating for your sleep, but still put a low ahi on the screen in the morning.

THanks, now I know some things to look for.

I have no suggestions for you, but remember that it wasn't that long ago that doctors considered fibromalagia a strictly psychiatric issue. This is mostly because anything that primarily involves women must, therefore, be a psychiatric problem. Heck, my sister's late MIL was sent to a shrink by two different doctors rather than do tests to discover why she had chronic nausea (turns out, she had stage 4 cancer).

How sad. It still is largely a psychiatric problem. Before I left the ER last week, I told the resident that I briefly felt my heart squeezing. They had already decided to discharge me (with no diagnosis). She told me I needed to see a psychiatrist. That was the third time I heard that. I was prescribed antidepressants for sleep apnea for years possibly, before I was diagnosed. I was also prescribed antidepressants for anemia and other conditions (don't want to list too much private information here).

THe fibromyalgia stuff is only a result of my own research. Doctors only suggested antidepressants for years. My sleep doctor not anyone ever connected sleep with fibromyalgia. I still think the stigma is there. Middle-aged, overweight, depressed women relegated to antidepressant land.

OceanBlue wrote:If someone is complaining for over a year that CPAP isn't helping, then I think it's their job to review the data and figure out the problem as that is what they are trained and paid to do.

I agree, that's why I suggested you find a new doctor. (But it won't be easy)

OceanBlue wrote:Well my doctor chose to talk to me about CBT therapy during an entire visit

But, it could turn out that this is exactly the therapy you need. Still, you need a doctor that you can feel confident is providing you the best possible advice.

OceanBlue wrote:I don't think it's the patient's responsibility to spend wee hours of the night googling, posting on online forums, trying to figure out how to bypass the restriction to the settings menu, etc. Not everyone is computer savvy and not everyone is well enough to do these things. Some of us can barely function.

Again agree, but until you can find someone that will "do their job" it's left up to you.

Unfortunate but true, something many, if not most, of us have had to deal with. As I said earlier, you can find lots of support and assistance here. Morbius could be especially helpful.

OceanBlue wrote:Don't know where in the world it would be, but I will check.

The slot for the SD card is so small it can be hard to find. What brand/model computer are you using?

You need to go to a straight pressure cpap or straight pressure bilevel.

In a study available on pubmed, 18% of the sample studied had 'Microarousals' on variable pressure. A microarousals knocks someone out of a deeper sleep stage to a shallower sleep stage. If you are one of them, you can find out easily by Doug this for 10 days. It's probably a better thing to try than using pharmaceuticals.

Since your pressure is low (< 12cm), you can easily transition to a straight pressure.