New Questions From Old Member?

[KenTheriot]

OK, when I say "old," (I'm 49) I just mean I've been a member here for a long time. It's just that I have not posted for, well, a long time Anyway, I wanted to catch up and see if I can get better information here than from my medical folks (whom I continue to see, BTW).

I am fiercely compliant with CPAP and have been for about 13 years now. And I STILL have not found a reliable solution for treating my apnea. It isn't for lack of trying on a regular basis. I see my sleep doc, allergy doc, and ENT regularly. Basically it seems like they've reached the extent of their ability to provide solutions. So here is a brief description of my issue(s). I am feeling confident that you guys and gals can help me.

I have what seem to be three problems, which may or may not be related.

1. I cannot breathe well enough through my nose at night.
2. I have a long skinny face
3. When air comes through my nose and mouth simultaneously (full-face or hybrid mask), my soft palate seems to alternate slamming shut in one position or another such that my airflow is completely and suddenly blocked at random times during the night. It's pretty terrifying.

After starting to describe what I have done so far for that first problem, it seems like I should create a different thread for each problem. So here is my plea for a solution to the nasal congestion problem.

Problem number one makes it very difficult to reliably use a nasal mask. Problem number two makes it nearly impossible (so far) to find a full-face mask that fits properly.

After all these years of experimenting with lots of different masks and machines, I am currently using a ResMed S8 Auto-Set Spirit (with humidifier) and Fisher-Paykel FlexiFit Nasal CPAP Mask. I also have a hybrid mask and a Quattro full-face mask.

To address problem 1, I have had two (the limit) septoplasty/turbinate reduction surgeries (one in 2006 and again in 2009). An arm-prick test showed I was allergic to nothing. A follow-up full blood allergy screening showed basically the same thing! My only allergy is a mild one to aspergillus mold. I avoid Afrin due to the rebound effect and other problems. I take oral sudafed a few times a week, trying to avoid that too. I take daily Flonase and Astelin. I also do NeilMed sinus rinses every day. So far, my allergist can only recommend continuing what I'm doing and hoping it gets better. Apparently it's non-allergic rhinitis. I have been a mouth-breather all my life - due to my nasal problems. Now, during the day, I can breathe through my nose most of the time, but as soon as I lie down, my nasal passages start to clog and I mouth-breathe.

Once I put my CPAP mask on, things do get better. My best results have been when using the EPR at 2 or 3 and pressure between 8 and 12. But as I drift to sleep, my mouth drops open, and then I snore! I don't know why I snore even with the CPAP, but there it is. So I use a chin-strap (this one: http://www.cpapsupplyusa.com/Chin-Strap ... 12911.aspx). That does not prevent me from mouth-breathing with the nasal mask on, so my wife sews ACE bandage wraps for me to cover up my lips.

But even with all that, I wake often because I cannot breathe well enough. And I often still manage to mouth-breathe either through or around the ACE bandage. So I wake up often still.

I have tried, and have had partial success, pressing my my tongue up against the roof of my mouth. But when I try to sleep without the ACE bandage, my mouth eventually drops open and I snore and mouth-breathe.

So, in the experienced opinions of all the folks in here, is there anything I can try that I have not tried?

Sorry for the long post. I just wanted to make sure all the information was there.

Thanks.

Ken

[Stormynights]

I bought 2 boil and bite athletic youth guards from Walmart and I fixed one of my top teeth and one for the bottom. I didn't try to attach them to each other at all. This helps me keep my tongue on the roof of my mouth. It is cheap and comfortable and works for me.

[robysue]

So here is my plea for a solution to the nasal congestion problem.

Problem number one (night time nasal congestion) makes it very difficult to reliably use a nasal mask. Problem number two makes it nearly impossible (so far) to find a full-face mask that fits properly.
...

To address problem 1, I have had two (the limit) septoplasty/turbinate reduction surgeries (one in 2006 and again in 2009). An arm-prick test showed I was allergic to nothing. A follow-up full blood allergy screening showed basically the same thing! My only allergy is a mild one to aspergillus mold. I avoid Afrin due to the rebound effect and other problems. I take oral sudafed a few times a week, trying to avoid that too. I take daily Flonase and Astelin. I also do NeilMed sinus rinses every day. So far, my allergist can only recommend continuing what I'm doing and hoping it gets better. Apparently it's non-allergic rhinitis.
Ken

They may not contain any new ideas for you to try, but it's worth looking at these two sites for ideas on how to deal with the stuffiness that's coming from your non-allergic rhinitis.

Unstuff your stuffy nose by Dr. Steve Park

Nasal breathing series by Dr. Barry Krakow

One thing that is mentioned in one or both of these links that may be relevant: For some people with non-allergic rhinitis, all the standard allergic rhinitis treatments (the Flonase, Astelin, the sinus rinses, the sudafed) can make their nose more irritated and more stuffy. And for these folks, the "cure" so-to-speak is doing less to try to clear up the nose. So, for example, you may be better off with a simple saline nasal spray as needed instead of daily regime of the sinus rinses and the Flonase and the Astelin.

And the sad thing is, you may be caught between a rock and a hard place: You need the CPAP to prevent the OSA, but the air that's being blown into your nose all night might be the real trigger of the on-going night time problems with nasal congestion. How does your nose react to super-windy days? Pre-cpap did your nose dislike sleeping under a fan? If the answers to those questions are "yes", then the "less is more" approach may be in order.

[avi123]

IMO, you should:

1) Try a Resmed full face mask. Most Resmed's FF masks use double silicone flaps cushions which are technologically advantageous for stopping leaks.
2) If your machine is not data output capable then change it to S9 Autoset and show data on this website, so that posters could comment.
3) Another option might be a Total Face mask:



p.s. I have vasomotor rhinitis. But I clear my nose several times after masking, until the airflow stops adding stuff to my nose. From there on it's a clear sailing for the rest of the night.

[JDS74]

What you haven't decribed trying is the Oracle 2 oral mask from Fisher-Paykel.

It's a mouth only mask that may help in your circumstances. You will have to learn how to NOT breathe through your nose and to find a way to support your chin to stop that mouth drop.

If you want to try it, send me a PM and I'll send you a write-up on dealing with the issues of using this mask.

[KenTheriot]

Thanks VERY much for those suggestions, everyone! I'm going to look into all of them. I see my allergist Thursday, so I'll ask her about the NOT taking Flonase and Astelin. And I'll ask my sleep doc in November about trying one or more of those other masks.

Thanks again!

Ken

[JDS74]

Ken

I read your post again and your description of the transition between breathing through your nose fairly well during the daytime and then having your nasal passages clamp down at night would be a good description of me

I really think the solution to your mask problem is the Oracle mask together with a properly fitted, very soft cervical collar.

This combination bypasses all of the narrow nose, and jaw drop issues that prevent maintaining a proper seal.

Best wishes in your quest for a solution.

[Wulfman...]

Ken,

I couldn't find where you mentioned what level of humidity your machine was set to.
If you're using a high setting, I'd recommend trying turning it way down or off for awhile and see if that makes a difference.
I found out within a couple of nights when I started that heated humidity was NOT compatible with my therapy. I need the cool "passover" humidification to keep my nasal passages open.


Den

.

[SockPuppet]

1. I cannot breathe well enough through my nose at night.

Given all the problems you have, you might want to invest in Dr. Falcon's booklets. I have heard good things about them but haven't read them myself. See http://www.uarsrelief.com/sales.html

One thing he emphasizes is:

One small Loratidine (Claritin) 10mg tablet, taken at bedtime.

Dr. Falcon also talks about relieving congestion problems in cpaptalk forum:

search.php?author_id=35914&sr=posts

You may find everything in his booklets spread among the posts he made here.

Good luck.

[zoocrewphoto]

What you haven't decribed trying is the Oracle 2 oral mask from Fisher-Paykel.

It's a mouth only mask that may help in your circumstances. You will have to learn how to NOT breathe through your nose and to find a way to support your chin to stop that mouth drop.

If you want to try it, send me a PM and I'll send you a write-up on dealing with the issues of using this mask.

I was going to recommend this as well. It won't matter what shape your face is. It doesn't matter if your nose is plugged. It might be an excellent mask for you.

[Therapist]

7 Tips to Breathe Better Through Your Nose - http://doctorstevenpark.com/7-tips-to-b ... -your-nose

[KenTheriot]

I just came back to this thread again and just want to express how amazing you all are for offering such incredible advice. I see my sleep doctor in just a few weeks (she is very busy) and will definitely ask her about the Oracle as a solution.

I've tried many of the nasal congestion solutions at the links listed above and none have made a difference.

Someone said: "If your machine is not data output capable then change it to S9 Autoset and show data on this website, so that posters could comment."

Since my last post, I have switched to the S9 Autoset. I now have a file with a couple of weeks of data from SleepyHead analyzing the card from the S9. I can share that file if that's of interest. Or just put some of the numbers in a post. How do you usually do this?

I do notice that even with all the problems and multiple wakings in the night (I must wake up a dozen times or so and turn on my side, then on my back, etc.), the average AHI in the data is less than 1 at about .65. I am not sure how accurate the machine is, though, at detecting these things. It would seem that since in a sleep study they need wires, etc. it would be hard to get the right data from the air pressure changes. But maybe I'm wrong about this. Thoughts?

One other thing to mention. I tried twice since the last post to use the full-face mask (Quattro) and didn't get a wink of deep sleep and had no dreams. I woke up about every 20 minutes snoring. So frustrating. Why do I snore with a machine that is supposed to adjust to events? Plus, even with the humidity on high and a slimline heated hose, the dry-mouth was extremely uncomfortable too. At about 5 in the morning, I got up and switched to the nasal mask and slept until almost 11:00 am. Thank goodness I'm retired.

Anyway. Thanks again for all the help from everyone!

Ken

[Pugsy]

How to post images of your reports is explained in this thread with some examples of what we like to see.
viewtopic.php?f=1&t=81072&p=737779#p737779

One thought about the snoring with the full face mask...some people need more pressure when using a full face mask. Maybe you just needed a little more pressure with the Quattro to better hold the airway open. Snores are indications of either minor or major collapse of the airway tissues.

[DoriC]

You may need more pressure to prevent snoring and check wulfman's post again regarding humidity!

[Sir NoddinOff]

Re: topic number one: Try these nasal dilators, I've had some good results from them once I got used to the feeling of something in my nose. I put Lanisnoh on them before inserting in my nose. I also use a small piece of 3M NexCare multipore tape to secure them:

http://www.ebay.com/itm/Breathe-Easy-Na ... 416d4d03dc