UARS, "Empty Nose", Migraine & CPAP?

Hello! I’m new here. I’ve been strugglibg for many years with severe migraines. During the past year I was referred to a great ENT in our area, who referred me for a sleep study.

I don’t have full-on OSA. I DO have some sort of sleep-related breathing disorder. They are calling it “Upper Airway Resistance Syndrome” for now. I know that there is some debate about if UARS is it’s own thing or a mild form of OSA. The sleep doctor thinks I should try a CPAP but doubted my insurance would cover it basef on the mild diagnosis.

The ENT has also diagnosed me with “Empty Nose Syndrome” a complication from a previous sinus surgery. This is another nebulous diagnosis but my primary complaint is extreme dry nose at night (with accompanying cracking, swelling, etc.) He thinks I should try a CPAP too. With a humidifier.

So now I’m kind of at an impasse … my husband has a CPAP and I’ve seen the lengths he’s gone to to get all the variables adjusted. I’m reluctant to try something expensive that may or may not work. I need some support and guidance on how to pursue this.

As I’m typing, I’m realizing I’m a bit ridiculous! TWO doctors who I respect have suggested CPAP but I’m stalling! Can you give me a kick in the pants?

Thank you in advance. - Tiffany

Hello there, yes, just go for it with the CPAP, if its something that you have to have to help you with the conditions you have then why not.

You may be holding back because of what you have seen your husband go through, well don’t, we are all individuals my dear, what is apt for your husband will not be for you.
Have another friendly chat with your doctors and you could get them to set you up with the right mask/machine etc, and make shore you get the correct pressure, if you need the humidifier tehn use it, I have it on my machine and it works well for me, and then get some advise from hubby who could guide you through all the variables as you call them.

Just one more thing that may be useful to you, if you find the pressure is to much for you with CPAP and you feel doctors are not getting it right, then ask about using the ex-hale feature on your machine if you have it there, that will easy things for you.

okay good luck my dear hope you get what you want.

Thank you for your encouragement! - Tiffany

Welcome to the community @tl_webb :slight_smile:

I have only been consistently using my CPAP for about a month. I had a dry nose before I began using a CPAP, but it is worse now (even with a humidifier). I use a lot of Ayr Saline Nasal Gel. It helps more than saline sprays because it is thicker and stays in my nostrils longer. I am looking at a heated hose to better control the mosture.

If you are concerned about the cost check online. I donated an older CPAP to an organization that helps people get CPAPs. Then you would only need to get an appropriate mask.

Has your CPAP helped you?

I’m very concerned about the nasal dryness because that’s one of the problems with “Empty Nose” - you can’t feel yourself breathing so you think you aren’t! Moisture helps. I would live to hear how other CPAP users handle dry noses. I think I’ve tried everything out there already.

Also, can you rent CPAPs to see if they work, beford buying?

Thank you everyone for the information!

I have used a Cpap with a humidifier for over 10 years. My nose would be on fire because the water chamber would be empty after so many hours of use. I would highly recommend using it. I hope it helps you!

Another question! If I get a “used” machine, how do I know what settings to use? Is that info part of the prescription from the doctor?

When I got my new machine it already had the prescribed settings which I’m sure was the result of my sleep study. Hope this helps.

You will need someone to set the pressure. It is usually determined by the doctor.

Hi Chrissy and tl-webb.

the issue with dry nose could be that your setting on the humidifier is to high, a lot of users over estimate this, if you use all the water in your chamber then it IS TO HIGH so lower the setting.
You should try at setting 3 and see how you go, increase it by one each night till you feel you have it right.
But best way of doing it would be to use your machine of an afternoon (if you want to take a nap) this will help because you would not be in a deep sleep and would be able to tell if your setting is high or not.
It may well be that you should have your pressure re-accessed by you doctor if you have not had a recent sleep study done or had a data reading recently, because if the pressure is to high then you will get the dry nose.
I have had same problem in the past and these things worked out for me personally, but hey its worth a try is it not.
well hope you get it sorted.

Thanks for the idea. I still don’t actually HAVE a CPAP, but it’s in the works now anyway.

Good on you ti-webb, just go for for it now am sure you will get a machine soon.

I also highly recommend making sure the humidity setting is accurate. Mine was initially too low so I would awake with a dry nose. I also use a nasal saline gel when my sinuses are dry.

My dr changed the heated humidifier to Adaptive and added the preheat feature and the Flex comfort feature for comfortable exhale. Nose likes all of these . All feel great. I always use the ramp to start, which my nose likes. My device is both CPAP/APAP, and I like the APAP better so far. Trying it for 6 weeks. So far, 50% improvement.

My sister had migraines. Harvard Med School taught her Biofeedback technique and it worked. Google. Basically you sit with hands on knees/in lap, concentrate on transferring the pain/heat/headache in your head to your fingertips. From there, it is dispelled out of your body. Length needed varied. She never took migraine drugs again.

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