New user with sinus headaches

[SnoNoMo]

Hi all,

I am the parent of a teen who was recently diagnosed with sleep apnea.  Although the AHI was only 8, she was quite functionally affected -- tired, sleeping tons, no energy. Starting the cpap in mid October has been a tremendous help with tiredness, concentration, and energy. Unfortunately she now has what we are pretty sure are sinus headaches (going to a headache clinic in January) that are a result of the cpap. They are pretty much all day affairs with times of more or less pain.

So far we have tried the following.

1) Switch to a full face mask from a nasal mask.  This did not seem to make any difference. After a month or so, returned to the nasal mask.

2) upped the humidity, used a heated hose. This did not seem to make any difference. Not sure this was given enough time.

3) Lower the top pressure to 10 (to a range of [5,10] replacing the original [5,15] range) This has happened a couple days ago. Her Dr was not enthused, but had no objections to changing it. No immediate improvement.

4) Last night tried 0 humidity, after reading a post here.

I managed to get OSCAR going thanks to help here. Attached are graphs from a recent night.  If you have any ideas or suggestions I would really appreciate hearing them.

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First time attacher...


   

[Jeff8356]

I tend to get sinus headaches when it is too dry. In the winter I set my machines humidity to 3 and the heated hose to 71F. Everyone is different though so you may need to experiment with the levels. Humidity can be a funny thing. For some, too much causes issues. For others, not enough causes issues. You can also try Climate Control auto and tube temp auto to see if that makes a difference.

Does she suffer from any allergies or sinus congestion normally? If so generic flonase at night may help. If it's just dryness then a saline nasal spray may help (Ayr is one I used over the years).

Others will be along who are much better at reading the charts.

[SnoNoMo]

Thanks for your reply. She doesn't normally have sinus issues. She does get seasonal allergies but not since October.  I think she has some flonase around so I can see if she will use that. She has used saline sprays (forgot to list that). 

There's a few "teen" issues that are making this a bit chaotic -- she wants a quick fix as everyone does but doesn't tolerate the slow process of deliberately trying small tweaks very well.  I am hopeful that maybe some changes to some of the settings will look promising to folks who are expert at reading the charts. If there are none I'd appreciate any recommendations on a general plan to try different temp/humidities (as opposed to what we've done: default settings followed by high as possible, followed by zero).

[Lucid]

Hi, SnoNoMo  Flonase takes a week or so to be fully effective.  In the meantime I would try something like Allegra to reduce any swelling.  

My ENT recommended Ayre Saline Nasal Gel for dryness.  I try to remember to use it in the afternoon, not right before bedtime.  I find this gel formulation more soothing than regular saline sprays.

I've been happy with the Auto settings for heat and humidity.  I would leave EPR on continuously, not only during Ramp.

It's wonderful that your daughter is getting help for sleep apnea early on!  CPAP is fiddly but life-changing.

[SnoNoMo]

Thank you all for the suggestions.

I will set the EPR on for tonight.

She'll try Allegra/flonase when we return home in a couple days.

[SnoNoMo]

It turns out the "sinus" headaches were due to a cerebral spinal fluid (CSF) leak. We learned that untreated sleep apnea can lead to CSF leaks. The CSF leak is healing and the headaches have greatly diminished so that problem is over.

A new problem is aerophagia. It started maybe a month or so ago, whereas it had not been an issue during the first five or so months. It became hard to eat and drink because the bloating was severe and her stomach hurt. 

To give her stomach a rest, she tried the Bongo Rx. Unfortunately that does not work for her -- she's exhausted and sleeping a ton, but not waking feeling rested. This is exactly how she felt before treatment.

So she is returning to using the cpap tonight. She is going to try sleeping flat without a pillow to see if that helps the air get to the right place and not her stomach.

A wedge pillow should arrive tomorrow so she will see if that helps the air swallowing.

Unfortunately I cannot give an Oscar chart at the moment (she's away at school). I will have her mail me the SD card.

Her pressures are low: min 4, max 10. Much of the night she's below 5 and 6. Still I put the EPR at 3; so it only has an effect latter in the night when her pressures sometimes go to 7 and 8 when she has apneas.

Can one of you experienced folks share your opinion on whether I should either lower the EPR or raise her minimum pressure to 5?  When she first started, her min pressure was 5. It was only after seeing how low the pressures stayed for the first half of her sleep that we tried 4 and her numbers stayed low (<1).  The aerophagia didn't start in response to anything we can see so I am at a loss for trying to help her.

If you have any advice I would really appreciate hearing it.

(The sleep dr. has not been helpful. We are going to Duke to see a pediatric pulmonologist who deals with c and other paps, but will have to wait until July -- Boston Children's Hospital was booked through the fall)

[Crimson Nape]

SnoNoMo   -  Just so you will know, all devices that treat sleep apnea with an increase in air pressure are called CPAPs (Continuous Positive Airway Pressure).  There are specialized models under this heading, such as Bi-Level, Adaptive Servo-Ventilation (ASV), etc.   Think of the term "CPAP" much like the term "Automotive Vehicle".  Under Automotive Vehicle are cars and trucks, each with brand and model names.  This is the same for CPAPs.

- Red