Ongoing sinus issues

[scenestealer]

Okay, so this one takes a little back story. And some middle and front story too, I guess. But I figure if you're on this forum, you know what it's like, and how many different things you have to try before getting it right, and even then it sometimes can be fleeting.

Short version is that my nasal passages pretty much close up every night before I go to sleep, making it pretty rough to wear the mask.

Now for the long version.

From 1998 to 2003, I owned and ran an underground music magazine. I only tell you this to let you know why I might have missed the signs of being exhausted all the time - because that's the natural state of a magazine editor. So I honestly don't know how long I had sleep apnea. Quite possibly (because of my recurring dream of choking on chewing gum) for at least ten years before it was diagnosed.

Also, about a year and a half ago, I had a nasty bit of chemical poisoning. See, I thought it would be awfully bohemian and/or punk of me to live in a warehouse. I guess I just didn't think very well what else was in said warehouse: silkscreening chemicals (which are basically the most toxic there are), and who knows what kinds of exotic molds and bacterias. When the heat wave hit last year, I got to the point where I was having visual disturbances, nausea, memory loss, and basically couldn't function. Oh, and my nasal passages swelled pretty much shut at that point.

I got out of there, but wasn't getting better.

About a year later they finally figured out the sleep apnea.

So, because of the "nasal congestion" they started me initially on a full face mask. Pretty sure I was having serious aerophagia, because the stomach pain was unbearable. I also tried several nasal masks at that point, and whenever I switched back to the full face, the stomach pain came back.

As you can see, I finally found the comfort select nasal mask, but the only way I could use it was to use Neosyneffrin or Afrin to clear out my nose, which worked great. I even started feeling a teensy bit better.

I went and saw an ENT (ear/nose/throat doc) and he said I had to get off the Neosyneffrin, because of the rebound. Well, I did so three weeks ago, and I've been struggling immensely ever since. He started me on Prednasone now, so I guess I should give it a chance. He also said I have a mild-to-medium deviated septum, and suggested surgery, though I'd like to exhaust all other options first, since I feel like I'm just STARTING to get my life back, and the last time I had surgery, it took me forever to heal from it (granted, probably had sleep apnea at that point). That, and I'm not sure I can afford the time off of work, especially if it takes longer than a week to heal back to working level.

At this point, I'm three months in on my CPAP and frustrated again. My nasal passages swell every night to the point where I feel like I'm suffocating when I put on the mask, and I've got a nasty sore throat right where my nasal tubes come out in my airway. I've tried the saline rinses, make-it-yourself ryno rinse, "moisturizing" saline rinse, this stuff called "nasal comfort" that has aloe vera in it (and is like $16 for a little bottle), and NasoGel. Only Nasal Comfort seems to help, and that only helps a little. I've also tried the Breathe Right strips, which actually do help until I put on the mask and then they displace the seal, causing a jet of air to hit me right in each eye.

I'm wondering if it's still swelling from the chemical poisoning (which was still going on when I started) or if I've moved into getting completely dried out by the air being pumped into me. Or a combination.

I've also tried mouth taping (hurt too much taking it off, kind of made me panic in the middle of the night, and I've got a "soul patch" I'd like to keep), and that *did* seem to decrease the dryness in my mouth, but not much in my nose. I've got a mouth strap now, but that seems to make my chin sweat and does little else. But I'll keep wearing it for now. I also tried a boil-and-bite mouth guard, but it hurt my teeth and it was still pretty easy to open my mouth and let air escape.

I have a humidifier integrated in my machine, but I can't stand to turn it up past "1", because it gets so incredibly muggy and hot. I need cold air to sleep. In fact, the only way I've been able to wear this mask at all in this summer heat is to either keep my window open at night (on the cooler nights) or blast my air conditioner (which is getting expensive). I've even resorted to putting refrigerated water in my humidifier tank (which is awesome), and once even put ice cubes in there (made with distilled water of course - who knew they'd be so much more pure and flawless than regular ice cubes? And so much harder to get out of the tray?). The problem there, is that as soon at the humidifier heats up, I lose the benefit of the cold water, which of course isn't cold anymore. I tried last night to turn up the humidifier higher and I woke up with it turned back to 1 (in my sleep), and my mask torn off.

Oh, and when I'm going through discomfort, I tend to take my mask off in my sleep. A lot. Not really sure for how long because my DME has been hesitant to sell me the software for my machine. I think I'm going to make him now though.

I've been feeling like absolute hell again, from sleeping so badly, and basically lost the last week to mental haze.

Is there any way to pump cold air into the machine? Like a tiny air conditioner and humidifier I could put in-line? And would that still retain the humidity? Thing is, it would be ideal if it could JUST pump into the machine, because eventually I'd like to get back to dating, and having to tell them I wear a mask at night is bad enough, without having to keep it as cold as the Fortress of Solitude.

Or is there a better solution for my nose swelling shut? A better moisturizing product?

Or am I foolish for putting off the surgery?

I'd just REALLY like to start feeling better sometime. I've already lost four years of my life to feeling so exhausted I could barely do anything, and I'd kind of like to actually HAVE the second half of my thirties...

[ozij]

You could buy a "passover" humidifier - which doesn't heat the water, and has a bigger water surface to help the blowing air collect humidity

https://www.cpap.com/productpage/respir ... -hose.html


Or a standalone - and you can chose whether to warm the water or not:

https://www.cpap.com/productpage/fisher ... ifier.html

In both cases, the cpap machine is connected to the humidifier with a short hose, and your normal hose is connected to the humidifier's outlet - there's no problem it getting that to work.

O.

[Guest]

Septoplasty is not such a big deal. I actually had Septorhinoplasty which is worse and it still wasn't a big deal.

As for what else you can do else wise.... I would suggest going back to the full face mask if you can't get your nose to clear up.

Also, I believe mouth taping would be a mistake for someone whom has nasal problems. You have to breathe one way or another.... rather it be nose or mouth

[Guest]

Also... you can turn your heated humidifier to "0" and it will act as a pass-over humidifer.

[Julie]

Have you actually ever tried something like the Ultra Mirage full face mask - I use the C. Select too but with 3M micropore tape and while it's not pleasant to remove the tape, it doesn't hurt - but prefer to use the full face mask most of the time - and congestion isn't much of an issue.

[Snoredog]

if the ENT says you have a deviated septum, not amount of sprays or steroids will fix that. Your septum is akin to a drinking straw, push on the end of it against a hard object and it will kink, when your nasal passages have that from a deviated septum the same thing happens.

Next, you need to make sure you size your mask correctly, use one too small and it will put pressure on the outside of the nose contributing to congestion. Hold up a ruler in a mirror measure from the center of the eye to the center of the upper lip, that is where the center-to-center on the mask cushion should rest, if doesn't mask is incorrectly sized. If you are using a medium then go to a large. The ComfortGel is a lot better mask then the one you are using, boiled correctly it will leak less. A Soyala nasal is even better.

The saline rinse you make at home is as good if not better than anything you could buy. I'm not a big fan of using steroids either. I don't have a single bottle of OTC sprays in my house except for Simply Saline and only that for convenience sake.

In order for CPAP to work, you have to be able to breathe through your nose. I don't know where you are putting those BreatheRight strips but I've been using them for years, they go down low on the bridge of the nose not up high, so they shouldn't be getting under the cushion causing leaks in the eyes. That is not good it can dry out your lense and put it at risk of scratching.

My suggestion:

1. Get your nose fixed you have to breathe through it first.
2. Continue with the saline only rinse, add a pinch of baking soda to the mix, if you are using tap water that may be your problem, get some distilled water, I nuke it for 30 seconds in the microwave to warm it up.
3. Toss out those OTC sprays like Afrin, they only work 3 days tops after that the spray itself causes your nasal tissue to swell from inflammation where the spray itself is the cause of the congestion.

If you want a good ENT for a 2nd opinion, give this guy a call:

http://maps.google.com/maps?client=safa ... 4743651014

He is probably about as conservative as you'll find, he's also the best ENT in the SF bay area.

[sharon1965]

scenestealer
sounds like you're having a really hard time...but there are things you can try:

i agree with snoredog: get the septum fixed...those OTC sprays and pills are really bad for you (as are the prescription versions, for that matter) and may cause other problems; i had my septum fixed in april and have not taken one single allergy or sinus pill since, whereas before that i had taken allergy meds every single day since i was 11 yrs. old; so when you say you'd like to explore other options first, i'm not sure what that means, since a deviated septum doesn't fix itself and if you mean pharmaceuticals i just really think that's masking one problem and creating others...having septoplasty was the best thing i ever did for myself (note: i realize there are people with such severe allergies that pharms are the only way to go...but if that's not you, please don't put that poison into your body)

don't know about ff masks, though mouthbreathers and people with chronic congestion swear by them--it's just the same process as any other interface in terms of trial and error till you get it right for you; as far as taping goes, you could try polident strips, especially since you don't need to tape the whole way across, you can leave gaps at each end of your mouth and that may help with the panicky feeling; they also adhere well but open easily at the same time...just do a search for polident strips and you'll find lots of suggestions

do you need your heated humidifier on? some folks find that the warm moist air actually increases their congestion (i did), especially right now with it being so muggy already, is there a need for it? you could use it as a passover, retaining the moisture property without the humidity...this way you could still put your icy cold distilled water in there and it would stay colder longer...might soothe those passages while staying moist...worth a try...also, add a nasal moisturizing ointment to your routine, especially if you're going to try turning the hh to zero...in fact, it might help you to use one day and night: some people find it helps keep the swelling down, too...i use 'secaris' but that's a canadian product i think, other members will be able to point you to a good nasal moisturizer

the saline rinses are of value even if you don't find immediate relief...i use the "NeilMed Nasal Rinse" kit, which is a saline flush...i love that thing (you can do a search of that too, or simply google it); i think you need to give these things a chance to work, your poor schnozz has been through a lot

yes, get the software!! i've had a barebones basic machine for the last 7.5 months and without data i'm just taking shots in the dark (pun intended) to get my therapy working...if you collect data you'll have a much better chance of figuring out how to make yours work

best of luck to you scenestealer...i know it's hard enough to adjust to xpap without added issues, but the kind folks on these boards can help with just about any thing that comes along! you're in the right place

take care
sharon1965

[scenestealer]

thanks guys, I really appreciate the advice. Lots of new things to try...

[betty303]

With the humidifier you have, you can just turn off the heat and use it as a passover.

I am watching this thread with interest, because just as I got everything set and working for a nasal mask (as a mouth breather I went through taping, polydent strips, various chin straps, etc. before I could make it work) and now I have a plugged up nose every night and can't use a nasal mask (and I can't tolerate FF masks.)

It is like clockwork - between 8-8:30 the ol' nose starts plugging up. Pay attention to what you are eating and when. That is helping me a bit. I have totally cut out dairy, wheat, and soy because it is definitely worse with those - but there is still something(s) else that I have not yet nailed down.

I have quit sprays but still use SinuRinse, usuallly at night, and I think I will try it in the morning instead for a while, then if that does not work, maybe both morning and night.

The ENT said my septum slightly bends to the left nostril - and the clogged nose is mostly on the right, so I continue to look for solutions.

The process continues - good luck

[betty303]

Why are all the messages in this thread too wide to fit my screen, when all the other messages are OK?

[dsm]

Just to add some further thoughts,

I am on daily nasonex but even that hasn't helped in 'bad' periods, I do have an additional spray (the type you can use for three days before it causes its own congestion) and I find that with a 'managed' approach I am getting by. BUT, am still pursuing the idea of further nasal work - my doc insisted I try nasonex for 6 months before moving to that step. After the past few weeks (mid winter here) I am ready to push the issue further.

Further observations are that over the past 3 weeks we hit some very cold wet weather & I stopped my daily exercising. At about this same period weight predictably went up and was also getting some serious nasal congestion requiring the managed approach with the 2 sprays plus for the past 2 weeks, the nasal rinse each morning. But upon resuming my daily exercise over the past 3 days, the regular congestion is going away !. This leads me to wonder if there is a clear link between regular exercise and nasal congestion. There are so many variables (esp the past cold wet weather) that I am being cautious in coming to any conclusions, but am thinking that regular exercise (30 mins daily walk (but I jog)) can make a difference.

Irrespective of the conclusion re exercises, am still going to follow up on nasal work with ENT.

Good luck with your efforts & you have been give a lot of good advice in the posts above.

DSM

Over the past

[sharon1965]

BUT, am still pursuing the idea of further nasal work - my doc insisted I try nasonex for 6 months before moving to that step

by nasal work, dsm, do you mean septoplasty? or something more involved? if it's pretty basic, and depending on circumstances, i have to say that i would opt for a permanent fix (ie surgery) over long-term pharmaceuticals any day...it sickens me how casually doctors prescribe this stuff...and, sorry if i'm being dense, but what would using nasonex for six months solve? do the symptoms go away? isn't that something that only works while you're using it?...funny enough, it was an allergist that told me i need to get off this stuff and that none of it works in the long term (don't mind me...i'm the resident pharmaceutical hater around here!)

But upon resuming my daily exercise over the past 3 days, the regular congestion is going away !. This leads me to wonder if there is a clear link between regular exercise and nasal congestion.

i have often wondered about this...i used to find that when i was having a sneezing and/or congestion episode, just getting up and moving around seemed to alleviate it, at least a little...and, at the risk of providing too much information, i also find "other activities" clear my sinuses up in a heartbeat ...sorry...but seriously, if that's an available option to you, maybe scheduling it around 8, 8:30 might do the trick to get you on your cpap!

[dsm]

BUT, am still pursuing the idea of further nasal work - my doc insisted I try nasonex for 6 months before moving to that step

by nasal work, dsm, do you mean septoplasty? or something more involved? if it's pretty basic, and depending on circumstances, i have to say that i would opt for a permanent fix (ie surgery) over long-term pharmaceuticals any day...it sickens me how casually doctors prescribe this stuff...and, sorry if i'm being dense, but what would using nasonex for six months solve? do the symptoms go away? isn't that something that only works while you're using it?...funny enough, it was an allergist that told me i need to get off this stuff and that none of it works in the long term (don't mind me...i'm the resident pharmaceutical hater around here!)

But upon resuming my daily exercise over the past 3 days, the regular congestion is going away !. This leads me to wonder if there is a clear link between regular exercise and nasal congestion.

i have often wondered about this...i used to find that when i was having a sneezing and/or congestion episode, just getting up and moving around seemed to alleviate it, at least a little...and, at the risk of providing too much information, i also find "other activities" clear my sinuses up in a heartbeat ...sorry...but seriously, if that's an available option to you, maybe scheduling it around 8, 8:30 might do the trick to get you on your cpap!

[scenestealer]

i too am back to trying Nasonex for a while. I had been trying something called Veramyst, but it was only a doctor's sample, and I ran out this weekend. So I went back to the Nasonex that I got as a prescription a little while back but didn't seem to be doing anything at the time. My logic for trying it again was that I had been using Neosyneffrin the last time I used it, and now I'm not. I'm also working my way thru a Prednasone prescription right now, so I figure the combination might work this time...

The ENT wanted to try me on some sort of steroid to reduce inflammation mostly because he said that inflammation can, when it's extreme, become it's own feedback loop. Meaning that just the fact that it's inflamed and difficult to breathe will cause the conditions that make it more inflamed. He (and I) wanted to see if it could be calmed down enough to heal itself. Especially since I don't remember ever having the level of sinus problems I've had for the last year and a half (only three months of which have been on CPAP) before I had that chemical poisoning... Maybe if it can be healed, I won't need septoplasty.

What I'm starting to think is that maybe I need a two pronged solution: maybe I need the surgery (just so my nose will work better with the CPAP), AND I need to do something to keep it from getting inflamed (whether that's increased humidity or what, has yet to be determined).

I'm leaning toward getting the great big passover humidifier (https://www.cpap.com/productpage/respir ... -hose.html) and trying that out, despite everyone's reviews saying the hinges are flimsy. Anyone have a better option than that one? If it plugs in in-line, does it go AFTER my built-in humidifier?

Is it possible my nose is closing off because of allergies? Maybe allergies specifically related to the CPAP? I've done my best to clean all the elements regularly, but I can't say I've been perfect. Having everything perfectly clean does seem to help just a teensy amount. Could I be allergic to the rubber or something else?

On another note, if I do the septoplasty surgery, my doc wanted to also take out my tonsils, and was talking about the possibility of a palette shave at the same time (though I've yet to determine if my insurance will cover that, or deem it "experimental"). He said I shouldn't get my hopes up, but there's a possibility those things in combination will cure me of sleep apnea. I have a feeling they won't, just because I have a tongue like Gene Simmons, and it probably lolls back into my throat...

On the exercise thing: I've had similar results. I'm pretty active and have been hiking a lot lately, as well as doing yoga and a variety of other things. I find that WHILE I'm exercising, my nasal passages clear themselves out pretty well, but that once I stop, they tend to slowly fill back up. I can't really exercise right before going to sleep, because it gets my adrenaline pumping, and then I can't sleep. And I don't have that "other" option for exercise at the moment - THAT I could fall asleep after no problem...

The nasal blockage also seems to have something to do with my circadian rhythms: I am often fairly clear for the whole day, but then at the end of the day, I stuff right up. It's not an environmental thing: happens no matter where I am as I'm getting tired. It doesn't even seem to be a time of day thing, since when I get tired earlier, I stuff up earlier, and when i get tired later, I stuff up later. And even when I've strapped on the mask way early, my nose will stuff up even while I have the mask on.

However, there have been plenty of times too, when I wake up in the middle of the night and at least one nostril is completely clear (after not being earlier). While I've been going through the last three and a half weeks without NeoSyneffrin, several times I've had to go to sleep without the mask because I was totally clogged, and knew that I would wake up around 2am opened up and be able to put the mask on.

Last night I slept pretty badly again - I think I probably had my mask off for at least half the night. I struggled to go to sleep and finally slept around 1am, woke at 2am and fell back asleep with some effort, then woke up at about 4am with my mask off, and was so stuffed up that when I tried putting it back on, I had to take it off again because I felt like I was suffocating. I think I slept until around 7am, woke with one nostril open and put the mask back on until 9am. So I'm not a COMPLETE zombie today, but certainly not tip-top health...

m

[scenestealer]

Oh, and the reason this page is wider than others is that Google link: the text editor doesn't know how to break it up, so that's dictating what width all the other text on the page is displaying (a little web geek info).