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Struggling with Sleep Apnea/Narcolepsy/Dysautonomia
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elegant_exotics Offline

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Post: #1
Struggling with Sleep Apnea/Narcolepsy/Dysautonomia
Hello,
I am writing for my son who is 23, 170 lbs and was diagnosed with moderate sleep apnea about 4 years ago. He went off to college and had to come home after 3 years. Now, we are trying to get this resolved so he can go back and finish. Struggling and could really use some expertise.

His first sleep study showed significant degree of obstructive respirations using PES tube (naso-esophageal pressure transducer). He pulled -27 cm H20 with RDI of 13 episodes per hour during NREM and 25 during REM sleep. Oxygen Sat dropped to 88%. The MSLT was abnormal showing hypersomnolence but no REM sleep so no narcolepsy diagnosis. Setting ranged from 9 to 11 cm H20 on his CPAP - a ResMed EPR Elite II.

3 years of trying every mask and chin strap and with another PES sleep study to verify pressure, we finally gave up on CPAP and he moved to a TAP appliance. My son has very sensitive skin and tried his best to adjust. The TAP appliance has been a better fit for him.

Most recent sleep study with the TAP appliance IN showed obstructive respirations and possibly needing some treatment by adding CPAP (using TAP PAP contraption). His RDI dropped to 11 episodes per hour with -3 to -6 cm H20 and sometimes up to -20cm H20. Lowest Oxygen Sat dropped to 93% with 6 episodes through the night. Apnea Index 0.3 Central Apnea Index 0, Hypopnea Index 3.9 (making AHI 4.3).

So, the impression was that the TAP appliance reduced the number of obstructive events but that he still had too many effort based arousals (217 arousals in 7 hr night (Index of 33). Arousals mostly in spontaneous category then snoring then hypopnea) and that while he was getting good oxygen, the arousals are lifting him out of REM or deep sleep and causing sleep fragmentation.

Then an EKG finding showed a possible arrhythmia. Taking him to a cardiologist who felt that his HR variation were excessive and possibly CAUSING the arousals that were not associated with obstructive events (where the HR rises as a response to no air). His range was 30bpm to 196 bpm throughout the night. The cardiologist felt his HR should be more stable through the night. We will be trying a Holter monitor to see if that shows anything. Also, considering purchasing a pulse oximeter to help find a pattern.

His MSLT showed REM sleep during naps so now he was diagnosed with narcoplepsy without cataplexy. He has no other narcoleptic symptoms.

He is on Nuvigial 150mg in mornings and guanfacine 1mg at night. Previously, he tried Inderal 30mg at night to settle the HR down but that had no effect.

He tested positive for daytime HR variation (dyautonomia - specifically Postural Orthostatic Tachycardia Syndrome) but otherwise, he is healthy. He feels like dirt in the mornings and has bone-crushing fatigue even with TAP (which he has had since August 2012 and uses religously). He feels better with the TAP than without but that's not saying much. He feels 2% better but essentially the same as before the CPAP 4 years ago.

Questions:
1. Is HR variation of 30 to 196 bpm normal during sleep?
2. Is 217 arousals normal? or near normal?
3. What could be the reasons for his autonomic dysfunction at night - are the arousals due to erratic HR or due to a slight, unmeasured obstructive event?
4. Which pulse oximeter would be best? Should we buy a Zeo or other device (I would like to track HR, Oxy Sat and which phase of sleep he is in but I haven't found a device that does all 3. It would be nice to have a device that would catch arrhythmia just in case that's an issue).

I don't know what other questions to ask. Help!

Thank you in advance to anyone offering advice,
Marti
03-05-2013 04:25 PM
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Shastzi Offline

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Post: #2
RE: Struggling with Sleep Apnea/Narcolepsy/Dysautonomia
Humm. First of all I am not a doctor, nor do I play one on tv. I am a data analyst so that is more like detective work.
However:
#1. Zeo will tell you if he is getting any REM in, that may be important on a daily basis. When you start doing something positive for his sleep rhythm you need to know it right away.
#2. The wrist worn pulse oximeter model CMS40-F is probably the easiest to get along with.

For the rest of the issues:
I think one of the physicians here can advise you better than I.

Good luck and Never Surrender!

"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
03-05-2013 05:09 PM
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DocWils Offline

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Post: #3
RE: Struggling with Sleep Apnea/Narcolepsy/Dysautonomia
I am a doctor, and sometimes play one on TV as well (medical magazines).

(03-05-2013 04:25 PM)elegant_exotics Wrote:  Questions:
1. Is HR variation of 30 to 196 bpm normal during sleep?
No, it is not. It can indicate a few things, some not really good. It requires more study and some clever investigation with a multidisciplinary approach.
(03-05-2013 04:25 PM)elegant_exotics Wrote:  2. Is 217 arousals normal? or near normal?
No and no.
(03-05-2013 04:25 PM)elegant_exotics Wrote:  3. What could be the reasons for his autonomic dysfunction at night - are the arousals due to erratic HR or due to a slight, unmeasured obstructive event?
Either is possible - you really need to take him in for a complete work up, what Americans sometimes call a "full house". Diagnosing over the internet in a forum like this is not possible (or legal - a doctor could get his license suspended for it), at best one can offer some clarity of the information or some advice, even with your wonderfully detailed patient history. It actually still isn't enough to make a diagnosis or even guess at the direction to look in. On a guess, and a guess only, I would do a CMP at any rate and start looking at his adrenals and the like - it is possible that there is some other underlying condition that is hidden. However, a cardiologist might well have thought to look that way. You have to ask the doc who is quarterbacking the entire investigation. If you don't have one, get one - this sort of thing needs one doctor to coordinate all the various areas of testing and keep the various departments communicating with each other.

(03-05-2013 04:25 PM)elegant_exotics Wrote:  4. Which pulse oximeter would be best? Should we buy a Zeo or other device (I would like to track HR, Oxy Sat and which phase of sleep he is in but I haven't found a device that does all 3. It would be nice to have a device that would catch arrhythmia just in case that's an issue).
Probably in your price range nothing like what you would like would be available, and devices that do all three professionally are actually just three devices cabled together and not worth the money you would have to pay. A lot of hospitals here don't even bother with it, and just use three separate devices. The closest to what you describe in an all in one is a portable sleep investigation kit. They run around 7 to 15k and you really need to know how to set it up and use it, let alone understand the data from it.
If you do look elsewhere in this forum, you find pulse oxymeters discussed at length.
03-05-2013 06:10 PM
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elegant_exotics Offline

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Post: #4
RE: Struggling with Sleep Apnea/Narcolepsy/Dysautonomia
Thanks Shatzsi!

I was actually looking at the F model and the least expensive Zeo.

Thank you, WilOrg for your detailed response!

In response to my third question - CMP - Is that Complete Metabolic Panel? He has had some recent bloodwork - some abnormalities - nothing glaring. He has been diagnosed with mild adrenal fatigue and hypoglycemia but the endocrinologist felt that those issues would resolve once sleep was resolved.

One problem is that we have focused on OSA and spent almost a year getting that piece "fixed" and there seems to be a couple of underlying issues, as you suggest. Another problem is the doctor we are getting the most help from is out of town so consistency has been an issue. We see his Sleep Doc tomorrow and I will ask him to take on the role of gatekeeper and a local cardiologist next week. Thanks for that suggestion.

Thank you for your thoughts on question 4 - I have been doing much web-surfing and not finding a device that does all three. I will stop looking and use a tip I found in another post to export reports in .csv format and then scale to match.

Thanks so much!
Marti
03-05-2013 06:47 PM
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elegant_exotics Offline

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Post: #5
RE: Struggling with Sleep Apnea/Narcolepsy/Dysautonomia
(03-05-2013 04:25 PM)elegant_exotics Wrote:  Questions:
1. Is HR variation of 30 to 196 bpm normal during sleep?
2. Is 217 arousals normal? or near normal?
3. What could be the reasons for his autonomic dysfunction at night - are the arousals due to erratic HR or due to a slight, unmeasured obstructive event?
4. Which pulse oximeter would be best? Should we buy a Zeo or other device (I would like to track HR, Oxy Sat and which phase of sleep he is in but I haven't found a device that does all 3. It would be nice to have a device that would catch arrhythmia just in case that's an issue).

More info:

We were told my son's issues stem from a narrow face and high, narrow palate therefore a possibly narrow airway. His adenoids and tonsils are slightly enlarged but not enough to warrant surgery (had 2 opinions) and he has a mildly deviated septum - again not enough to warrant surgery. We have been told his pharangeal tonsils are enlarged - enough to warrant surgery but due to the large number of blood vessels, it would be dangerous to perform this as an adult. Also, his jaw is set back about 1/4 inch.

His issues became noticeable when he had orthodontics to correct buck teeth which I have read that there wasn't room in his mouth for his tongue so his teeth were pushed forward (he wasn't a thumb sucker or pacifier user). Then correcting the overbite meant that there was no room for the tongue once again so it drops back into the throat. This makes sense to me.

Question 5:
Is this possible or an old wives tale (no room for tongue in his mouth due to narrow face, set-back jaw, etc)? Would MMA surgery be a valid option or even the retainers that enlarge the jaw (e.g., Homeoblock)? Should we push for adenoid/tonsil/pharangeal tonsil removal anyway - to gain any percentage of airway opening?

Question 6:
Does the body fail to enter normal sleep patterns once sleep has been disturbed (in his case for 8-9 years of undiagnosed OSA)? Are there ways to trick the body into a more normal pattern?

I'm not afraid of bad news - I have a lot of early cardiovascular and early cancer in my family. My biggest fear is that I won't be able to discover what his medical issues are and he would continue to struggle. So, any suggestions as to what it could be - or what tests to ask the doctors for would be appreciated or even what specialty to pursue would be helpful.

I am a single mom with multiple health issues of my own. His health is now my priority so he can go back to school in the fall.

Thanks to anyone willing to take on these hard questions!
Marti
03-05-2013 07:02 PM
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jgjones1972 Offline

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Post: #6
RE: Struggling with Sleep Apnea/Narcolepsy/Dysautonomia
Hello elegant_exotics,

Welcome

Most of your questions are better addressed by Wilorg, but I figured I'd chime in on a couple things.

I too, like Shastzi, find the Zeo to be helpful. If you or your son already have a smartphone (either iPhone or Android) you can pick up a Zeo Mobile for slightly over $60 on Amazon. It comes with the headband with sensors and a small unit that snaps on the headband and the charger; then you just download the Zeo mobile App to your phone. Charge it up, connect to the phone wirelessly via Bluetooth and you're good to go.

When it comes to recording pulse oximeters, it will depend on personal preference. I like the CMS50H because it shows you perfusion - which lets you know how valid the oximetry readings are. But it is kind of bulky and awkward to wear all night. Many prefer the CMS50F because the small processor is worn like a wristwatch and has a much more comfortable and less bulky finger clip that is attached.

As for question five - I am not a doctor - but from what I've read it would definitely be possible that the narrow face, set back jaw and limited room for the tongue could be causing these problems; but, if it were me, I would really try my best at PAP before resorting to something as drastic as surgery. The problem with these surgeries (like mandibular advancement) is that success rates aren't what I would call spectacular. Many people subject themselves to a surgery like that only to find that it didn't help or that it didn't eliminate the need for PAP therapy, but only reduced the amount of pressure needed.

Question six - Years of untreated apnea can have the body's sleep patterns thrown all out of whack. With successful treatment over time the body will begin to normalize to a healthy sleep pattern, but it usually doesn't happen instantly. The best way to trick the body back into healthy sleep patterns is with successful therapy over time.

I don't know if this is an option for you or not, but if possible, you may want to get a good Internal Medicine Specialist to be the doctor who coordinates everything with the other doctors. Internal Medicine Specialists, in my opinion, are usually a little better at seeing the whole picture.

Good luck!
03-05-2013 08:33 PM
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trish6hundred Offline

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Post: #7
RE: Struggling with Sleep Apnea/Narcolepsy/Dysautonomia
Hi elegant_exotics,
WELCOME! to the forum.!
I wish you good luck on getting the best treatment for your son.

trish6hundred
03-05-2013 08:50 PM
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DocWils Offline

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Post: #8
RE: Struggling with Sleep Apnea/Narcolepsy/Dysautonomia
The facial type you describe can cause difficulties of the nature you have told us about. A maxillofacial surgeon could give you better information as to the success of any operations it his case, as could a good ENT. I agree that an Internal Medicine guy could be your best bet as quarterback.

Let me be clear on one thing, though - surgery is always a bet. There is no guarantee of success in most any sort of cutting around the face and soft tissue of the mouth, nose and neck. A lot of calculation is put into making sure that the exact right amount of tissue is removed, things move around the right way, etc, but there is no way to be sure that it will work - the healing factors, changes in the mucous membranes, the change of the physics of the air movement to what we hope is the ideal may not be, given the physique, too much or too little removed, and lots of other intangibles. As much as every effort is made to ensure the eventual successful outcome of such operations, there is simply no way to be sure that it can do what is hoped it will do. Therefore, please consider such a thing only if it is the only possible way to improve the situation, and all other factors have been eliminated, and all other less invasive therapies have been exhausted.

Most surgeons will recommend the knife - it is more or less their raison d'etre (I know this very well, having for a while been one, until an accident made me join the light side) and of course, it is the expedient means, but my feeling is to be as conservative as possible, and invade the body only when absolutely necessary. Some types of operations are almost always predictable of their success rate (we even have in Switzerland tables of percentage of success for all given factors in certain types of operations to act as insurance guidelines) but the sort of thing you are suggesting is far more unpredictable. It can be a great cure, or it can do pretty much nothing after much suffering and financial outlay. Patients can lose their sense of smell, have difficulty swallowing, regularly choke on the nasal mucous as it comes down the throat, or choke from the saliva production as the uvula is made too short to help in guiding the saliva into the correct position to be swallowed when reclining, the list goes on - it is a delicate balance, and we disturb it at risk. When it works, it works, but when it doesn't, it can sometimes make matters worse, or do nothing at all. So by all means consider it, but look for what is really causing all this first - if it is from other conditions that are being masked by this overlying problem, then surgery will not help at all.

One thing that is cheap and quick to try, to see if it has any effect in moving the jaw to the right position, is a device called a MYO, an Australian invention (as is CPAP) that is essentially a mouth guard with lots of little nubbins on it to stimulate the tissue of the jaw and palate. It will bring the jaw forward and cause the muscles of the jaw to stimulate themselves while sleeping, bringing the jaw forward in the day time as well. For the 50 or so bucks it will set you back it is a cheap way of seeing if certain types of maxillofacial surgery would be an option.
03-05-2013 09:12 PM
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elegant_exotics Offline

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Post: #9
RE: Struggling with Sleep Apnea/Narcolepsy/Dysautonomia
Thank you, WilOrg, for the detailed response regarding surgery. I may be a little too anxious for it and my son is the opposite. I am just desperate for something to help and not considering all of the factors. Some of what you have written is frightening!

My son reviewed the responses with me before his doctors appt. He sends his thanks and best regards.

We had our appt with the Sleep doc yesterday and outlined 4 steps to take to make things better, hopefully. One is to add CPAP to TAP using his old CPAP machine (not doing the full TAP-PAP contraption yet). Just testing out if there is any improvement in effort arousals by opening up the airway a bit more. Second is to pull the jaw forward a bit more with the TAP appliance. Third, is to increase Nuvigil by 75mg mid-day. Fourth, try Xyrem at night.

Each of these steps would be sequential in case the previous step doesn't work. Then depending on what works - possibly combining some of the steps to maximize effect.

I purchased the Zeo which he is going to use tonight for the first time and the CMS-50F is being shipped tomorrow.

Thanks everyone for your support and encouragement.
Marti
03-08-2013 01:03 AM
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DocWils Offline

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Post: #10
RE: Struggling with Sleep Apnea/Narcolepsy/Dysautonomia
Good luck on all that and keep us informed. It is not an easy road to go down, and I wish you all possible success.
03-08-2013 05:58 AM
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