Wow, Crazy Polysom Results, Folks!

[socknitster]

Hey, Everybody, I know I haven't been as active here since my second child was born 2 years ago, but I just had to share this bizarre result and see if anyone out there has any comments that could be helpful!

Background: June 2007 diagnosed with severe OSA, AHI=30. Rx: Bipap 16/12 (because without bipap I had many central apneas) Within a few months, I had my tonsils removed which allowed me to run my bipap at a lower pressure. I mostly just ran it on auto and 90% pressure was usually 11/8 or 10/7. I was doing pretty well until the birth of my second child June 2008. Not unexpectedly, there was a resurgence in fatigue due to the crazy hours with a newborn. However, my mood destabilized as time went on and fatigue worsened until October 2009 when I got the flu (presumed H1N1) and basically didn't recover within a normal timeframe. I had to discontinue nursing my 18 month old son because of the exhaustion and I had already begun an antidepressant months before. After roughly 6 months, tons of doctors visits with various specialists and endless research I was diagnosed with chronic fatigue syndrome (a cousin of fibromyalgia, which I have been tested for before and was just a few points short of a diagnosis at that time about 5 years ago.)

So, recently I got a super cool, awesome new sleep doc. First they did an overnight oximetry, which showed good oxygenation, but lots of bradycardia--many minutes with pulse in the 40's. My GP did a 24 hour Holter which I haven't seen the report for yet, but the nurse on the phone told me it was "normal." Its been three years since my last sleep study, so time to do another and see what is happening.

Got the results today. And they are absolutely nuts. ZERO, yes I said ZERO, obstructive apnea and hypopnea. FOUR, yes, FOUR central apneas in 6.5 hours of sleep. My sleep cycles were totally messed up. Here are the stage percentages for the whole night with normal referenced range in parenthesis:

wake: 4.2% (normal 1.
N1: 8.9% (4.2)
N2: 74.4% (53.
N3: 3.9% (14)
REM: 8.6% (26.2)

Central apneas were more prevalent on back (3) than on side (1). In general all the numbers look better on the side--more REM, less arousals. Interesting since the best sleep of my life was during my second pregnancy when I slept on my side the entire time, propped up with pillows so I couldn't roll on my back at all. I had zero AHI during REM (of which there was so little, but that is not what you would expect to see.)

Periodic Limb movement was ruled out because they were not associated with any arousals.

I experienced 60 spontaneous arousals for an index of 9.7. The nurse practitioner couldn't explain this to me, and I have to go see the actual doc in Sept, but I believe this to be a phenomena called alpha intrusion which is common in those suffering from pain disorders, especially fibromyalgia.

Interestingly, I wondered what a psg would look like without any PAP! We recently had a power outage that lasted 12 hours, including overnight and I have no battery backup for my machine. I felt absolutely miserable the next day, so that says to me that I still need the machine.

Here is another bizarre thing. The technician operating behind the scenes started me out at 8/4 bipap and gradually increased the ipap all night, but never adjusted the epap. So when I woke in the morning it was to a machine slamming on and off at 11/4--very uncomfortable! And despite my reviewing of the data, I can see no reason for the final prescription of 11/4. There were no OBSTRUCTIVE apnea/hypopnea to base that on. No snores, flow limits, nothing. At 9/4 and even 10/4 I experienced more REM, was awake less overall time, had fewer arousals, fewer central apneas and fewer desats (which were incredibly minor to begin with). That alone, would suggest that the COMFORT of the lower pressure is a better bet for me obtaining the best QUALITY of sleep possible. Not to mention an appropriate amount of pressure relief.

Of course, I couldn't tell any of this until I got home and studied the numbers in detail.

When they called me shortly after the study to tell me my new Rx was 11/4 I dutifully reset my machine, but couldn't tolerate it! So, I had to reset to 11/6 which the nurse practicioner said today was fine. But after looking at all the data, I'm going to reset to 9/5 and see how that feels for a few days (though my past experience tells me that IPAP less than 10 feels suffocating).

OK, the NP did give me some good advice though--I need to find an alternative to the SSRI that I'm on because SSRI's are known to decrease REM sleep time. She thinks I would be better off with a norepinephrine form of antidepressant like bupropion or serzone or something like that. I also talked to her about possibly adding a drug like Neurontin or Lyrica which are known to increase deep sleep (and Lyrica is a treament for fibromyalgia). She wants me to take all of this up with my GP on Friday when I see him. And she gave me a scrip for Nuvigil. She gave me a sample pack last time and 1/2 of a 150 mg tab seems to be helping me combat the intense grogginess and fatigue I struggle with all day, especially upon rising and the first 3-4 hours of my day.

So, I have TONS of research to do before Friday so I can make the proper request of my GP.

Anyone have any comments or suggestions? I could upload any of the charts if anyone is interested in seeing them.

Overall, I have to say I'm amused, frustrated, bewildered, annoyed. . . by these findings. Personally I think if I can minimize the alpha intrusion, minimize the centrals and get my body clock on a normal rhythm, I think I will have this sleep thing beat!

Cheers!

Jen

[timbalionguy]

Something tells me your problems lie somewhere other than adjustments to your CPAP therapy.

One thing you might suggest to your doctor is to try a trial with an ASV machine. Although it really isn't visible in my PSG numbers (other than my sleep profile looks strangely like yours-- and I am not taking any medication that should affect this), I am getting MUCH better sleep with a lower pressure, and the ASV algorithm.

[socknitster]

I'm not sure what ASV is? I searched cpap.com and came up with nothing. Is this a servo-ventilator? The nurse practitioner made a point of saying my psg wasn't quite bad enough for them to trial me on a servo-ventilator during the study. Clearly something needs to change. I'll start with getting off the SSRI (no small thing, in my experience) and see if that changes anything.

I think the whole study would have looked a lot better and made a lot more sense if they had kept the IPAP and EPAP 4 units apart instead of leaving the EPAP set at 4 all night. That kind of discomfort caused by the IPAP slamming on and off skewed all the results for half the study in my opinion and its making me more than a little bit angry. It was so uncomfortable (which I noted in my post-study notes that morning) that I woke up and could not return to sleep at 5:45 am, not my normal wake time! The fact that I was assigned that as a prescription just seems incredibly stupid!

Once again, I feel like I have to feel through the dark, fending for myself because all the "medical professionals" can't be bothered to do what needs to be done to actually help me.

I'm so sick of "going to medical school" (aka, books, good internet sites) to educate myself on every aspect of my incredibly complex illness because each individual doctor has no clue how to help me. I have to actually figure it out on my own. I've been doing pretty well on my own, but I'm tired of paying other people and then having to tell them what I need.

Sorry for the rant. Just feeling frustrated! Spent all my free time today on pubmed trying to find what antidepressants affect sleep the least negatively or offer some benefit for slow wave and REM. There is abysmally small data on this topic.

[kteague]

Understandably frustrating when instead of answers you get more questions. Is there talk of another study after going off the med? Would be interesting if the centrals and reduced REM were resolved. How many limb movements were noted? Just wondering if they could be contributing to your pain even if not to your fractured sleep. Hope some of resident gurus will weigh in on your situation.

I have a "Sleep Terminology for Dummies" question. Is an alpha intrusion a form of an arousal or a cause of arousal?

[echo]

Wow Jen, interesting and imaginably very frustrating experience. Just a question, at such low pressures, is normal CPAP not possible? Or does the lower EPAP also somehow prevent CAs? In any case maybe Cpap with Cflex or EPR may be sufficient?

OutaSync I believe has those alpha intrusions due to the Fibro, so maybe that diagnosis is warranted for you... You might want to check with her... Unfortunately she has not had much luck with CPAP resolving her sleep problems

As far as I understand alpha wave intrusions can be associated with pain & especially Fibro. It is a different type of brainwave pattern than what you normally see during sleep, thus the term "intrusion". I don't know all the technicalities but a quick google search can give some good answers. Where's a forum sleep tech when ya need em?

[montana user]

Well as a sleep tech I can not for the life of me understand why he did not raise the EPAP? There should always ( in most cases) be a 4 split between IPAP and EPAP. Alpha intrusion is commonly seen with pain, I do not however believe it is associated with the spontaneous arousals. This study does seem very odd. I hope you get some answer's and please share them with us!!!

[socknitster]

Understandably frustrating when instead of answers you get more questions. Is there talk of another study after going off the med? Would be interesting if the centrals and reduced REM were resolved. How many limb movements were noted? Just wondering if they could be contributing to your pain even if not to your fractured sleep. Hope some of resident gurus will weigh in on your situation.

I have a "Sleep Terminology for Dummies" question. Is an alpha intrusion a form of an arousal or a cause of arousal?

Alpha intrusion is some new terminology that is coming out in sleep medicine from what I can tell. It refers to brain waves seen on an EEG. When you are in stage 3 or what has been referred to as Delta or slow wave sleep, your brain is emmitting a frequency called delta waves. When you are awake, calm with your eyes closed, you are emmitting alpha waves--I believe yoga and meditation are supposed to take you to this alpha wave "zen" state, but it is not supposed to interupt your sleep and chop it all up into fragments. My chart that shows my sleep stages through time looks like someone was chopping it up with tons of arousals. I had 62 total arousals through the 6 1/2 hours of sleeping. Only 2 were associated with central apnea, the rest were labeled "spontaneous." I"m ASSUMING, but don't know for sure, that this is what I have seen referred to as alpha intrusion or alpha-delta, when it specifically intrudes on delta sleep. Since I didn't have much delta or REM, these spontaneous arousals are pinging me out of ever getting to deep, restorative sleep.

As alpha intrusion relates to fibromyalgia. I believe it is the cause of the pain. It has been connected with several pain disorders including rheumatoid arthritis. It seems to me that since Delta sleep (stage 3) is our most restorative sleep, when we secrete growth hormone to trigger all the little construction workers to fix all the tiny damages we accumulate during the day, that if you screw that stage of sleep up you are going to suffer the pain of not having all those tiny injuries fixed. This leads to joint pain/damage and muscle pain/damage that is seen in r.a. and fibro. I can't seem to find any research that points to possible causes of alpha intrusion or spontaneous arousals--except, possibly, SSRI's.

Spontaneous arousals were also found on my first sleep study three years ago, but then I had such severe obstructive sleep apnea that it was not surprising to see my sleep completely screwed. I also had bradycardia then. The nurse practicioner said it is unusual to see someone with bradycardia who isn't desatting. Hopefully I will get more answers about this issue soon after I speak with my GP on Friday.

Echo,

The idea, for me, was that bipap would prevent the central apneas from occurring. According to the sleep tech of my first study, when she put me on cpap, I went straight into central apnea and stayed there until she gave me significant pressure relief. Standard pressure relief for bipap is 4 units. I don't know why that wasn't followed. Anything much more than 4 units starts to get uncomfortable--feels like the machine is slamming on and off and it gets very claustrophobic very fast even for someone 100% compliant with cpap for 3 years like me! I find this part of the psg to be incredibly disappointing. What is really hilarious is that there seems to be no rhyme or reason to when they increased the pressure either. I was at 8/4 for 3 hours, then at 9/4 for 1.5 hours, then at 10/4 for half an hour--the best sleep of the night was at these last two pressures as far as percentage of REM, fewer central apnea, fewer desats and fewer spontaneous arousals. Then I was at 11/4 for about 2 hours--and immediately after changing it to 11/4 I had two central apneas--50% of the centrals happened at this pressure. With zero obstructive apnea/hypopnea as a guide for pressure, wouldn't these other perameters be what you used to recommend an Rx? Maybe less happened during these pressures because they were such a smaller portion of the overall timeframe, but like I said, there seemed to be no reason for the increase, except maybe they were told to do a certain range and got distracted by another patient and didn't give my psg the attention since it may have seemed to them that nothing was happening.

Periodic Limb Movement:

There were a total of 12 LMs for an index of 1.9, none were associated with arousals, so they said that was insignificant. That is under the chart titled PLMS. Under that chart is a second chart titled LM which states that there were zero LM's associated with the following categories: microarousal, awakening, resp event. It then gives the number 33 next to spontaneous and an index of 5.3. I'm not sure what that signifies. The doctor says that PLMS is ruled out in the report. That is all I know.

Regarding my pain. It seems to be from long periods of inactivity. So in the morning I am stiff and sore and gimp and limp and any time I sit in a chair for more than a few moments it is the same. It could be from the reduced blood flow to these areas from the bradycardia. I have no idea. This kind of pain is generally associated with low thyroid and the associated slow metabolism, from what I can tell. It is really, really hard to say.

It is possible this kind of bad sleep is genetic. When my son was 5 1/2 years old (now almost 7), some of you may remember he had a sleep study after his tonsilectomy--to confirm he no longer had OSA. I only have the summary report but it has some similar findings. A snippet from it: "The sleep onset latency was 18 minutes but there were 4 awakenings, two rather prolonged with a wake time after sleep onset increased to 126 minutes. The REM latency was increased to 263 minutes and REM was diminished to 8% of total sleep time. Slow-wave sleep was increased to 42% of total sleep time. During the Study, there were 55 arousals scored (AI=8.1). There were no increased periodic limb movements." Harry at the time was saying he was seeing things and I was extremely worried he was developing some form of narcolepsy where you dream while awake. He had persistent fatigue, some attention problems and lots of nighttime awakenings. He has outgrown most of these symptoms now. Of course, Harry was not on any medications at the time that could be blamed for these disruptions, like I am.

In my research into alpha intrusion I found someone on a forum who had it who also mentioned several other family members, including children, that were affected.

I did get some good info out of this. I know I get much better sleep on my side--more REM and stage 3 with less oxygen desat and fewer arousals. I intend to immediately implement my pregnancy strategy again--pillows propping me up against my back so I can have at least two sleep positions without actually turning flat on my back. That worked very well during my last pregnancy. I know I'm still bradycardic during sleep. I'll need to further explore that.

I hope the insurance and docs will let me have another sleep study to confirm any changes in the near future. But I'm doubtful. The NP implied I might have to go by "how I feel." Which totally pisses me off, honestly, because if I had been running that sleep study the information wouldn't be so shoddy. Yeah, I am going to have to pay hundreds if not thousands for this study, which I feel is incomplete. And then they won't let me have another one because they are so expensive. If they are so damn expensive, why do they have people in there making such dumbass mistakes? They could have gotten tons more useful information if they hadn't been so clueless, in my humble opinion. But I won't have any choice but to pay for it, will I?

Sorry. Yikes. Guess you know how I feel about this!

[socknitster]

Well as a sleep tech I can not for the life of me understand why he did not raise the EPAP? There should always ( in most cases) be a 4 split between IPAP and EPAP. Alpha intrusion is commonly seen with pain, I do not however believe it is associated with the spontaneous arousals. This study does seem very odd. I hope you get some answer's and please share them with us!!!

Yes, I know Montana! Do you know what the difference is between alpha intrusion and spontaneous arousals is? It is clear as mud to me! The thing is, the study says I had all these arousals, but the only time I remember waking was when I turned from side to back and vice versa which I only did 5 times. So, on the worksheet in the morning I remember writing that I thought I had awakened 4 times. Certainly not 62 times!

[montana user]

alpha intrusion I believe you explained very well! When we do the pre test and say close your eyes we look for the alpha waves. What sucks is when your asleep and the alpha intrusion appears. You have to look really hard at other sleep stage give aways ( such as sleep spindles in stage 2). It is usually associated with some sort of pain. The spontaneous arousals, from what we see in the lab are just that. there is nothing that causes it, you just wake briefly. I have been able to slow these while on CPAP. so its one of those things we are still learning and trying to figure out. I would love to see your sleep report thought and see if I can read "between" the lines and see if there is something else there. Im sure others would like to see also and maybe they will pick it up?

[sunnyway]

I'm having very good results with Savella for FMS and Lunesta for sleep. I could not use Lyrica (which caused mild hallucinations); Cymbalta worked pretty good as an SSRI, but Savella is working better for me. I've used just about every possible SSRI during the past 20 years; those that worked sometimes had unpleasant side effects, and often I took a cocktail of two or three different antidepressants. Now it's just Savella and Lunesta and my hypertension meds.

I started taking Nuvigil in mid-June but my anesthesiologist discontinued it (along with the Savella and Lunesta) for my hysterectomy on 7/12. I'm resting up at home now and haven't felt unduly fatigued. However, I still have the script and will start taking Nuvigil again if the CFS kicks in again. It made a huge difference in relieving chronic flu-like exhaustion/fatigue and I won't hesitate to use it again if necessary.

Of course I may have just caught up on my sleep deficit thanks to the CPAP. The CPAP may deserve the credit for minimizing the depression and fatigue. It took about 5 months; there was no instant improvement for me.

[socknitster]

Montana,

I will try to scan the document and post tomorrow--thanks for the offer! I will take you up on it!

Interesting, in my reading tonight I noted that alpha intrusion is associated with anxiety in individuals who have fibro.

On my sleep study comments, the sleep doc states specifically that, "The differential diagnosis of disturbed nocturnal sleep in addition to sleep disordered breathing would also include possible anxiety disorder/depression or other affective disorders, etc. Clinical correlation is suggested."

Ya think? I don't think anyone who gets this kind of crappy sleep is going to be very stable.

I was going along, thinking my sleep was fine because I was being treated with bipap--ASSUMING that the problem lie elsewhere--diet, something else. . . . Nope. Always comes back to sleep for me. My whole life. It is sleep. Of course I can't have just ONE sleep disorder. I have to have something really, really complicated that no one understands, that has no treatment and that affects all aspects of my life. It is enough to make you want to take prozac.

Thanks for the comments on what is working for you Sunnyway! I will add those drugs to my list of things to research before going to the doctor on Friday. I tried Cymbalta--it made my blood pressure go sky high! And it took a long time to return to normal after I discontinued it. I hadn't heard of savella. I've been researching the non-SSRI antidepressants because they don't affect sleep like SSRI's do. I'm beginning to wonder (on day 3 of Nuvigil, a little early) if Nuvigil alone wouldn't be enough to battle some of the "depression" I'm feeling. Since my primary complaint is fatigue and it seems to be fighting that valiently.

So much to study, so little time!

[FatiguedMe]

Hi Jen,
I just have to add in here PLEASE be careful coming off of SSRI meds. I am not sure how long you have been on it, just be aware that there can be some major issues when discontinuing SSRI's.
I had been on Paxil for 10 years and we tried to take me off (my Dr did it too fast) I got very paranoid and suicidal. I have NEVER been like that in my life EVER. I am presently on Lexapro. I know this is another SSRI, but I don't know how to come off of them safely. I am doing OK again, just hate the flat feeling these meds can give us.
I take mine for Anxiety Disorder/Depression.
Feel free to PM me anytime if I can help.
Susan

[timbalionguy]

Yes, servo ventilator is what I meant by ASV.

The next time you have a sleep study, insist that they try you on ASV anyway. It may be that the fast action of these machines might be enough to quench some of those spontaneous arousals. It is possible this is part of the reason why I have noticed such an improvement here.

In any case, its late. I need to get connected to mine!

[Guest]

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[mckooi]

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