Sorry Gang....Another Newbie with Questions....

[Sleepyhead787]

Hey everybody, so glad to have found this site. Seems to be a lot of great people here. I look forward to learning from your experience.

Long story short, about a decade ago I made the mistake of trusting a doctor that cut my sympathetic nervous system to reduce facial sweating. It has resulted in a host of new issues, not the least of which is poor restorative sleep. In order to feel fully rested sometimes it takes 10-12 hours (assuming I had that time available). Always so darn tired in the morning and yawing throughout the day. I am not able to pursue sleep studies, etc as it would raise red flags with my job.

I would like to try a CPAP to see if this helps my situation. I'm a very light sleeper and due to prednisone use have thinner skin which a "heavy mask" may leave marks/indents on my face. At least that is a concern. I looked through the new user section on this site but didn't see recommended masks and CPAP machines. What would be considered some of the most comfortable systems available today? Also, any way to try before buying? Any help you can provide would be GREATLY appreciated. Thank You in advance! Sleepyhead

[Sleepyhead787]

Something I should add about the surgery that cut my sympathetic nervous system (It's called ETS. DON"T every do it!)....basically your sympathetic nervous system controls skin temp/sweat, heartrate and lung function. Sometimes I feel like my lungs aren't breathing deeply as they used to. I have developed numbness in my hands and feet but notice if I consciously force myself to breath more deeply it seems to help a bit. Sometimes I have to remind myself how shallow my breathing is and then will try to breath more deeply. This is during wakeful hours so I imagine when I'm not conscious my breathing is very week. Just some theories at this point.

[Julie]

Hi, welcome... Have you talked to your doctor about this? Normally people are referred for an in-lab sleep study to see if they have apnea (or anything else related), and with your surg. history, I think you should first talk to your doctor because there may be other related issues going on. But I'm not sure why your work would have to know if you went for a study - not unless your MD is somehow sworn to let them know you've gone, whatever the results are. Even if you drive trucks, and we have other truckers here, even getting a diagnosis (and knowing you can finally deal with the issue rather than ending up hitting someone in your sleep on the road) should be a good thing if you are compliant with Cpap. Or am I missing something else?

Just saw your 2nd note - you REALLY need to deal with a doctor, pref. a neurologist, about all that before deciding on your own that you have apnea and trying to treat it 'off the grid'. Too much else involved physically to take chances... and anyone who would disagree would be irresponsible I think.

[Bill44133]

You will need a prescription from a doctor to get a cpap machine...

You can try looking on your local craigslist to see if any are available. You will most likely want to
get auto adjust machine to find the correct pressure. Make sure the machine you purchase is data capable.
You need more information other than compliance data.

To avoid marks on your face you can get mask liners... Remzzz's or padacheck work well to get marks off of your face.

Work all the issues out here...


I wish you well...

[Sleepyhead787]

Hi, welcome... Have you talked to your doctor about this? Normally people are referred for an in-lab sleep study to see if they have apnea (or anything else related), and with your surg. history, I think you should first talk to your doctor because there may be other related issues going on. But I'm not sure why your work would have to know if you went for a study - not unless your MD is somehow sworn to let them know you've gone, whatever the results are. Even if you drive trucks, and we have other truckers here, even getting a diagnosis (and knowing you can finally deal with the issue rather than ending up hitting someone in your sleep on the road) should be a good thing if you are compliant with Cpap. Or am I missing something else?

Just saw your 2nd note - you REALLY need to deal with a doctor, pref. a neurologist, about all that before deciding on your own that you have apnea and trying to treat it 'off the grid'. Too much else involved physically to take chances... and anyone who would disagree would be irresponsible I think.

Thanks for the feedback Julie. I've been to a lot of doctors this past decade. Every doctor I've been to (outside of those performing ETS surgery) give me the deer in the headlight look and ask why the heck would I cut my sympathetic nervous system. I say because another doctor told me it was non invasive and would fix a problem with sweat while neglecting to mention all the side effects. Anyway, I've seen many doctors including neurologists but nobody has any answers. I'm an airline pilot and sleep apnea has become a hot button issue recently. I'm not flying right now (leave of absence). I'm doing my own research trying to figure this out but prefer to not generate medical records regarding sleep apnea. My airlines keeps asking me to sign a waiver as part of my disability leave to grant them access to any/all medical records. These are the reasons I've decided to try to figure this out on my own.

[Guest]

You will need a prescription from a doctor to get a cpap machine...

You can try looking on your local craigslist to see if any are available. You will most likely want to
get auto adjust machine to find the correct pressure. Make sure the machine you purchase is data capable.
You need more information other than compliance data.

To avoid marks on your face you can get mask liners... Remzzz's or padacheck work well to get marks off of your face.

Work all the issues out here...


I wish you well...

Thanks Bill. I will look on Craigslist. Are there any favorite brand/models people like here? Has technology changes much the past five years for example? I will check out the Remzzz and padacheck mask liners.

[yaconsult]

Welcome, Sleepyhead787. Without a prescription, your most likely options are craigslist or buying from one of the known forum members who sometimes sell extra machines they have.

90% of machines on craigslist are overpriced due to the inflated medical "list" prices. And you need to worry about the machine having been used in a smoking household. To see what a reasonable price for a certain model is, you can check secondwindcpap.com but they also require a prescription to buy from them. I got lucky on craigslist and found the low hour machine in my profile for $100 but such deals are rare.

You need a good data-capable machine that works with the free SleepyHead software available from http://www.sleepfiles.com/SH2/ I would recommend buying only a machine that SleepyHead says it supports.

In terms of masks, one of the popular nasal pillow masks would be unlikely to leave any marks.

[Sleepyhead787]

Thanks for the intel yaconsult! Do you use a nasal pillow mask? Do you need to have something to hold the closed with this type of design? I've seen some people talking about "heated tube" and a way to add moisture to prevent drying. Would you mind commenting on these features? Thanks!

[Sleepyhead787]

Any opinions on this I just found on Craigslist. Says it was only used 5 times and has heated climate line in unopened package. They are asking $500

ResMed S9 AutoSet w/H5i Humidifier

[robysue]

Sleepyhead787,

I have to say that I'm in 100% agreement with Julie's advice. With the history of the surgery AND the list of current symptoms you need to be seen by a neurologist. Given the surgery, you need a full work up to determine which of your current symptoms and problems are directly caused by the surgery and what can to alleviate them. Given the history of unrestorative sleep, you also need a real sleep test to determine whether you have sleep apnea, periodic limb movement disorder, or some other sleep disorder. And if you do have sleep apnea, you need a full sleep test to find out what kind of sleep apnea you have.

The fact that the surgery affected your sympathetic nervous system raises the possibility that if you do have sleep apnea, it may be central sleep apnea (CSA) that you have rather than the more common obstructive sleep apnea (OSA). And central sleep apnea can be much tougher to treat even with the guidance of a knowledgeable sleep doctor. The problem in central sleep apnea is that the drive to inhale is "lost" and the sleep breathing becomes shallower and shallower until the person is not breathing at all for at least 10 seconds. The problem in obstructive sleep apnea is that the tissues around the upper airway collapse into the airway and block it: The drive to inhale is still present and while the airway is blocked, the patient continues to try to breathe, but the blockage prevents the air from getting into or out of the (functioning) lungs. And here's the thing: The symptoms of CSA and OSA are pretty much the same---in both conditions, the person typically suffers from daytime fatigue, daytime cognition problems, and very unrestorative sleep regardless of how long the person sleeps during the night. When left untreated, both conditions increase the risks of the person causing accidents by falling asleep while doing something inherently dangerous---such as driving a car or flying an airplane. And the "falling asleep at the wheel" episodes can be so brief that the person is not really fully aware of them until after a disastrous accident happens.

And yes, I get it: You're an airline pilot and "can't afford" to raise red flags about asking for a sleep test because you are wanting to get cleared to fly again. But here's the thing: If you do have sleep apnea of some sort, you need it to be effectively treated before you start flying again. If you chose to fly with improperly or inadequately treated sleep apnea, then you are a risk to yourself and everybody aboard whenever you choose to fly. And choosing to self-treat to avoid winding up having to deal with the red tape of proving that your PAP therapy is effective is NOT a workable solution in my humble opinion.

[Sleepyhead787]

Sleepyhead787,

I have to say that I'm in 100% agreement with Julie's advice. With the history of the surgery AND the list of current symptoms you need to be seen by a neurologist. Given the surgery, you need a full work up to determine which of your current symptoms and problems are directly caused by the surgery and what can to alleviate them. Given the history of unrestorative sleep, you also need a real sleep test to determine whether you have sleep apnea, periodic limb movement disorder, or some other sleep disorder. And if you do have sleep apnea, you need a full sleep test to find out what kind of sleep apnea you have.

The fact that the surgery affected your sympathetic nervous system raises the possibility that if you do have sleep apnea, it may be central sleep apnea (CSA) that you have rather than the more common obstructive sleep apnea (OSA). And central sleep apnea can be much tougher to treat even with the guidance of a knowledgeable sleep doctor. The problem in central sleep apnea is that the drive to inhale is "lost" and the sleep breathing becomes shallower and shallower until the person is not breathing at all for at least 10 seconds. The problem in obstructive sleep apnea is that the tissues around the upper airway collapse into the airway and block it: The drive to inhale is still present and while the airway is blocked, the patient continues to try to breathe, but the blockage prevents the air from getting into or out of the (functioning) lungs. And here's the thing: The symptoms of CSA and OSA are pretty much the same---in both conditions, the person typically suffers from daytime fatigue, daytime cognition problems, and very unrestorative sleep regardless of how long the person sleeps during the night. When left untreated, both conditions increase the risks of the person causing accidents by falling asleep while doing something inherently dangerous---such as driving a car or flying an airplane. And the "falling asleep at the wheel" episodes can be so brief that the person is not really fully aware of them until after a disastrous accident happens.

Robysue,

Thanks for your input. First and foremost, If I've ever felt remotely fatigued I have not operated heavy machinery and never would. I have seen several neurologists and specialty doctors. They simply don't know how to treat the symptoms of ETS. It's not a standard thing so there are few answers and frankly I am tired of getting that look of "you did what, I really don't have anything for you". Believe me, I've tried many things and seen many doctors. I've found some things that help with side effects. Trial and error in treatment (either it works or doesn't work) has produced the best results. I may will end up going to a sleep doctor. That said, I would like to learn from the community here who from personal experience probably are more knowledgeable collectively than many doctors. Those who are in the trenches dealing with something tend to dig the deepest for answers. I see that here.
And yes, I get it: You're an airline pilot and "can't afford" to raise red flags about asking for a sleep test because you are wanting to get cleared to fly again. But here's the thing: If you do have sleep apnea of some sort, you need it to be effectively treated before you start flying again. If you chose to fly with improperly or inadequately treated sleep apnea, then you are a risk to yourself and everybody aboard whenever you choose to fly. And choosing to self-treat to avoid winding up having to deal with the red tape of proving that your PAP therapy is effective is NOT a workable solution in my humble opinion.

[Sleepyhead787]

My last message go posted in your quotes. Here it is again...

Thanks for your input. First and foremost, If I've ever felt remotely fatigued I have not operated heavy machinery and never would. I have seen several neurologists and specialty doctors. They simply don't know how to treat the symptoms of ETS. It's not a standard thing so there are few answers and frankly I am tired of getting that look of "you did what, I really don't have anything for you". Believe me, I've tried many things and seen many doctors. I've found some things that help with side effects. Trial and error in treatment (either it works or doesn't work) has produced the best results. I may will end up going to a sleep doctor. That said, I would like to learn from the community here who from personal experience probably are more knowledgeable collectively than many doctors. Those who are in the trenches dealing with something tend to dig the deepest for answers. I see that here.

[Julie]

Please don't take this the way it might sound... but if you have e.g. Horner's syndrome, possible apnea (and/or thyroid, hematologic problems or other things) and you're flying (or wanting to) plus I'm guessing taking your own mix of wake-up meds, you need to get it all sorted by proper doctors and if they've told you you shouldn't fly, but haven't told the airlines, someone should... or if they've told you there's any connection between your surgery and apnea for whatever reason, but it's not fixable, you shouldn't be taking things into your own hands as a pilot (or even a regular old driver). Please get your medical situation coordinated somehow, don't put anyone including yourself in jeopardy with any of the above and don't try to use us as a back door to part of your problem without the whole thing being sorted out.

Horner's (according to Mayo) "Horner syndrome is a combination of signs and symptoms caused by the disruption of a nerve pathway from the brain to the face and eye on one side of the body.

Typically, Horner syndrome results in a decreased pupil size, a drooping eyelid and decreased sweating on the affected side of your face.

Horner syndrome is the result of another medical problem, such as a stroke, tumor or spinal cord injury. In some cases, no underlying cause can be found. There's no specific treatment for Horner syndrome, but treatment for the underlying cause may restore normal nerve function.

Horner syndrome is also known as Horner-Bernard syndrome or oculosympathetic palsy."

There's actually a lot more to it, but this will give you a hint of its serious nature....

I am certainly sorry for you and what happened... and I know it can be very frustrating to want to fly and not be able to (ex father-in-law aero. engin.) but you can't go around regs put in place for good reasons. I really hope you do find answers and fly again though!

[Guest]

I was checked for horners. I do not have that. I do not take any medications or use any wake up meds. There is nothing medically disqualifying about ETS and flying. I am just looking to improve the quality of my restorative sleep. I am safe in everything I do. I appreciate your concern, sincerely. I passed a three day physical that covered everything from ECG, stress test, cognitive testing, sight, hearing, awareness, etc as part of the hiring process. Anyway, thanks all for your help. I will continue to read and learn. I've changed my mind. I'm looking up sleep doctors now. I did see one several years ago but nothing turned up (I had a take home sleep study thing I wore on my finger). Perhaps will schedule a sleep study at the doctors office if they feel that will give better clues. Thanks again!

[Bill44133]

Any opinions on this I just found on Craigslist. Says it was only used 5 times and has heated climate line in unopened package. They are asking $500

ResMed S9 AutoSet w/H5i Humidifier

That is a good machine.. gives data, but the price..
$500.00 is alot of money see if you can get them down to $300.00.


Good Luck!