New member with EDS. Few questions.

[3mp0w3r]

Thought I would introduce myself.  I have been having fatigue issues for the past few years and it has been a struggle to get this investigated since family docs eyes tend to glaze over when you mention chronic fatigue.  I have a genetic disorder called Ehlers-Danlos syndrome which I am sure contributes to the floppyness of my upper airway (I am within normal BMI range)

I had a recent sleep study that did not test for upper airway resistance which is associated with EDS.   AHI was 13.3 during rem sleep.  While considered mild apnea, the sleep physician recommended a trial of CPAP.  (My Epworth sleepiness score was moderate). 

I have severe fatigue which has worsened the past few years.  While part of this is likely related to EDS, the treatment options for EDS are slim so I am planning to go ahead with CPAP or APAP since at least apnea can be treated.  I understand many people are using Resmed units with APAP settings. 

I guess I am wanting to hear from people on here that have upper airway resistance or EDS and what was discovered and any recommendations/advice. 
Also, do people with mild apnea tend to see as big of an improvement as those with moderate or severe apnea?  (probably will get a variety of answers for that last question)

[OpalRose]

Hi 3mp0w3r,
Welcome to Apnea Board!

I'm bumping your thread up, with the hopes someone here will be able to answer some of your concerns.

As far as machines go, either the Airsense10 Auto or DreamStation Auto are both good choices.

[Beej]

Twp things which may help:
1) if you are not sleeping on your side, see if that results in feeling better. This is often suggested for folks with obstructive events, which UARS is not, so you'd be experimenting to see if it helped you or not. Tracking your results in a systematic way may give you an idea if it does or not, ie. consistently feeling a specific way after side sleeping vs feeling a different way after back sleeping, etc.
2) some folks tuck the chin into the chest, essentially kinking the airway. A cervical collar or small pillow under the chin may help with that.
I'll look up the Ehlers-Danlos to see what else I can brainstorm.

[3mp0w3r]

Twp things which may help:
1) if you are not sleeping on your side, see if that results in feeling better. This is often suggested for folks with obstructive events, which UARS is not, so you'd be experimenting to see if it helped you or not. Tracking your results in a systematic way may give you an idea if it does or not, ie. consistently feeling a specific way after side sleeping vs feeling a different way after back sleeping, etc.
2) some folks tuck the chin into the chest, essentially kinking the airway. A cervical collar or small pillow under the chin may help with that.
I'll look up the Ehlers-Danlos to see what else I can brainstorm.

Is mild apnea not something that is typically treated with CPAP?  I am planning to try it given the fact that I have mild apnea with AHI of 13 and likely have a degree of UAR.  

EDS is a collagen mutation so tissues are stretchy.  It is associated with hypermobility and a plethora of annoying symptoms affecting virtually every system since collagen is throughout the body.

[Sleeprider]

My wife has mild apnea with an overall AHI similar to yours, 9.4 overall and 15 REM, mostly hypopnea. She was dispensed a Resmed Airsense 10 Autoset about 2 months ago, with a prescription for 8 cm pressure. We have since moved to auto pressure and most nights it is up around 12. She reports feeling less tired, and had no problems adapting to the CPAP with an AHI averaging from less than 1 to less than 2 now. If you were to ask, she would say it's worthwhile. No EDS but mild apnea.

[paperboy]

Before you spend a lot of money on doctors and equipment, I think you should try Beej's suggestion of a cervical collar.  Use a soft collar to keep your neck extended and your lower jaw supported.  Try several to find the most comfortable one. They usually cost <$20.
Good luck.

[3mp0w3r]

I already have a cervical pillow and find it makes zero difference.  I change positions at night often. 
I have already been to a sleep physician who recommended CPAP.  Will be going forward with it.  Just unsure which mask to get.  I think I switch from nose breathing at the start of the night to mouth breathing on and off.

[Sleeprider]

It's a good idea to first verify that if a mask does not work out, you can exchange within 30 days. Most DMEs will allow this. If so, then start with the nasal pillows. It is the most comfortable and easiest to get a seal. If it turns out, you can't control the mouth leaks, the logical stem is to replace that with a full face mask. Most people tolerate and do better on nasal therapy. The ones that don't need to adpat to a full face, and that is a harder process since there is more surface to seal, fit is critical, and skin irritation can be a problem. Nasal pillows first is the recommendation.

[Gideon]

SleepRider is right   you should try masks from smallest to largest.  In general the smaller the mask the less it leaks.  in regard to mouth leaks

Mouth Breathing
Mouth Breathing is when you open your mouth and the air pressure from your PAP is venting out your mouth typically showing on your charts as a large leak which can substantially negate the effectiveness of your therapy.  It is generally not good. The solution varies depending on the person

How to manage Mouth Breathing, not in any particular order.
Tongue Trick.  Place the tongue on the roof of the mouth, Practice during the daytime.  The idea is to train the tongue that this is a good place to be, not overnight, but it works for some.
Chin Strap.  A chin strap is to manage mouth leaks from a variety of causes.  Most result from the jaw dropping or opening either partially or wider. The chin strap is to gently keep the jaw closed.  If you have to crank it shut to make it work this is not the correct solution.  Note that your jaw is strong enough to open if it wants to.
Cervical collar.  A Cervical Collar may also be used to keep the jaw from dropping.
Mouth Guard.   The concept here is a closed mouth guard to keep the air from leaking out.
Taping.  The purpose of taping is to seal the lips and prevent mouth leaks / mouth breathing.  It is not to stop the mouth from opening.  I make sure that I can easily open my mouth, when taped, if I need to.  
FFM – Full Face Mask or Hybrid Mask.  This is a very traditional solution and it is generally effective.

[Beej]

Clarification: I suggested the 2 positional changes to test out while you determine what else you are going to do. I wasn't sure if or how much the Ehlers Danlos would affect using a CPAP. If it can work OK with that condition, by all means go for it; you'll likely feel better.