New To CPAP and it's Costing Me My Health

[streamteamer]

Started CPAP about 3 weeks ago. After a second sleep study tritration I was scored 27-Moderatly Severe. For a year prior to CPAP I suffered chronic congestion/post nasal drip and sought medical assistance from an allergist, ENT, pulmonologist, naturopath and my MD. I have been on numerous nasal sprays with little to no relief. Now with CPAP the congestion is MUCH WORSE. I am now congested in both sinuses. The congestion is ALL THE TIME-even during the daytime and when I am sitting up. The only time it clears is when I get up and walk around. I've tried humidity and no humidity from 1-5 settings. I am becoming a junkie with Afrin.. It's the ONLY thing I have found that will open my sinuses. Now even that is not very effective. I've used a nettie pot for years and have switched within the past few months to a SinuPulse Nasal Irrigator and use SinuAir Nasal Powder mixed in tap water. It is 5:00 am and have hardly slept which is becoming a nightly routine...and I dread going to bed.
I can't sleep proped up because of back and neck problems-and I just paid off a $2000.00 dollar soft sided water bed that can't/doesn't prop up. I have mobility issues and cannot stand-walk for extended time periods. I also suffer from asthma, ostioarthritis and have a heart condition. I work and staying home/recuperating from my long night is not an option
I am at wits end. I can no longer get any sleep because of the congestion without the CPAP and it is marginal at best with the mask on. If I go to a full face mask the air will now go in through my mouth and mess with my upper throat and lungs. I've been warned by my allergist this may well cause my lungs to infect...which they have once now since starting CPAP..

Please HELP... I am desperate.

[JeffH]

I am becoming a junkie with Afrin

That is your problem, not cpap.


JeffH

[streamteamer]

It's not that easy... Didn't use Afrin prior to being on CPAP and did not use it right away with CPAP...The congestion became Chronic the first day after starting CPAP. The ONLY relief I get to sleep is with Afrin. Because of my asthma my lungs feel tight much of the time. Without Afrin I feel like a fish out of water. Congested above and tight in the lungs below. If I stop Afrin I literly struggle to breath. I've tried many nasal sprays with no help. I know and want to get off Afrin but have not found anything else that helps.

[BlackSpinner]

Mask? Machine?
Please fill in your equipment - upper left user panel.

We can't help unless we know what you are using.

[robysue]

Because of my asthma my lungs feel tight much of the time. Without Afrin I feel like a fish out of water. Congested above and tight in the lungs below.

Sounds to me like your asthma is not yet well controlled. (And if the asthma was well controlled at one point, it sounds like it is no longer well controlled RIGHT NOW.) What asthma meds are you on and have you got an inhaler or nebulizer or some such thing? When was the last time you had a serious follow-up for the asthma rather than the sinus issues? Getting the asthma under control should help tremendously with your problems sleeping.

If I stop Afrin I literly struggle to breath. I've tried many nasal sprays with no help. I know and want to get off Afrin but have not found anything else that helps.

The problem with the Afrin is that it triggers rebound congestion when it is used for more than just a few days. (The max recommended length of use for Aftin is three days because of its tendency to cause rebound congestion in the majority of users. How long have you been using it?) And in your case, that rebound congestion is likely aggravating your asthma, which in turn is aggravating your sleep problems.

As for additional ideas on dealing with the congestion problem and trying to wean yourself off the Afrin. Have you talked to your doctor(s) about the rebound congestion problem and gotten their advice about what to do?

One thing that could be tried provided it is NOT contraindicated by the asthma medication is short or long term use of OTC decongestants such as Sudafed or anti-hystamines such as Claritin or Zyrtec (if the sinus problems are due to allergies) or a combination anti-hystamine/decongestant such as Claritin-D. But you really need to check this out with the doc who's treating the asthma before starting to take OTC decongestants and allergy meds.

A second thing that could be tried provided it is NOT contraindicated by the asthma medication would be long term use of a nasal steroid spray. These sprays don't provide the instant relief from the congestion that Afrin does; but their long term use reduces the inflammation in the sinuses and nasal passages and (slowly) provides relief in the long term---as in after several weeks of use.

A third obvious (so obvious it may be stupid) suggestion: When was the last time you changed the filter on the air intake of your CPAP machine? If you have allergies, you should probably change the fine filter much more often than recommended so that it filters out as many allergens as possible.

[Janknitz]

Ditto what was said above. Your initial increase in congestion may have been due to a poorly adjusted humidifier (it takes time to find the right setting), but you compounded the problem with Afrin and you are now on an endless loop with Afrin. The only relief you get is to use Afrin, but the Afrin is now causing the congestion you are having (not CPAP). I had this with another nasal decongestant and had a miserable time stopping that decongestant--it was as bad as what I imagine withdrawal from cocaine must be (probably not, but that was my perception at the time--AWFUL!). But the bottom line is, you have GOT to stop the Afrin.

If I go to a full face mask the air will now go in through my mouth and mess with my upper throat and lungs. I've been warned by my allergist this may well cause my lungs to infect...which they have once now since starting CPAP..

Baloney! That doesn't even make sense--whether the air from CPAP goes in your nose or mouth, it's going to go into your throat and lungs.

A full face mask with the correct amount of humidification for you will be great for your lungs--you will breathe clean, filtered, humidified air all night--nothing wrong with that. If you don't already see a pulmonologist, you need to be seeing one to get your asthma under control. CPAP has helped my asthma immensely.

The flex settings on your machine are important--make sure you have your flex set to 3 to give you plenty of exhalation relief--that may be why you are perceiving the chest tightness because it's hard to breathe against pressure at first. Some people with asthma do better with a biPAP machine because it gives more precise exhalation relief--you should talk to your pulmonologist and/or sleep doctor about that.

I'm going to say it--no sense in dancing around this issue--sounds to me that you don't want to use CPAP and any excuse will do--a not uncommon feeling in the beginning and the reason why so many people "fail" at CPAP. Apnea is a life-threatening condition and there's a reason it was recommended for you, but if you're going to quit, quit because you're honest with yourself that you just don't want to do this, rather than blaming the CPAP. The reality is that the CPAP will be a huge help to you if you are willing to quit whining and do what needs to be done to MAKE it work for you. Nobody promised this would be easy.

[Wulfman...]

It's not that easy... Didn't use Afrin prior to being on CPAP and did not use it right away with CPAP...The congestion became Chronic the first day after starting CPAP. The ONLY relief I get to sleep is with Afrin. Because of my asthma my lungs feel tight much of the time. Without Afrin I feel like a fish out of water. Congested above and tight in the lungs below. If I stop Afrin I literly struggle to breath. I've tried many nasal sprays with no help. I know and want to get off Afrin but have not found anything else that helps.

Afrin is CAUSING your problems! Get off of it! The rebound effect is what's got you hooked on it.
The numbers of people on this forum who have reported getting addicted to Afrin are significant. Go up to the Search line and do a forum search on "Afrin". You may find out how to wean yourself off of it.

What's your CPAP humidifier setting? If you have it cranked up high, it's probably going to make your congestion worse. Turn it way down or Off with just water in the HH tank.
Do you do nasal irrigation/cleansing before bedtime? If not, you probably need to. Neti Pot and/or saline sprays my help.

Whining about this therapy isn't going to help you a bit. If you're an "adult", you need to figure out how to deal with it rather than just complaining.


Den

[Slartybartfast]

Janknits calls 'em like she see's 'em. I don't disagree with what she says.

Many of us, myself included, suffered from asthma and congestion BEFORE CPAP (B.C.) and the therapy helped tremendously. If you're not getting relief, try another pulmonologist. But don't blame CPAP for your condition. Breathing clean filtered, humidified air, whether through your mouth, or nose, or a combination of each is a good thing. Saline nasal sprays, BTW are wonderful. Trash the Afrin. It's nasty stuff.

[So Well]

Please HELP... I am desperate.

1. To wean yourself off Afrin start with one nostril. Don't put in any Afrin in that nostril for several days. Once the rebound effect dissipates, drop the Afrin entirely and wait for the rebound congestion to disappear from the other nostril.

2. What climate do you live in? Humid climates call for little to zero CPAP humidity. It helps to know what the humidity level is in your bedroom. If it is over 40% you may not need any humidity.

3. Equipment and mask type can make a big difference. Please fill out your equipment profile (text, not images).

4. Also let us know what your pressure settings are and what the diagnosis was.

Many have come here with problems and turned them into success.

[streamteamer]

Ok, when I stop the Afrin and can't breath through my nose how do I use my CPAP mask? I take exception when people start name calling, saying I'm whining or don't want to use the CPAP!!. How would you know? I joined this group to try and get some good solid help. Not subject myself to beliefs some may jump to. You don't know me or my situation. Why don't you ask a general question instead of labeling and name calling, all bullying techniques! Don't reply to me if you don't have something constructive to say. I want help not defend myself with each post!

You must have missed the point about the full face mask. I was WARNED by my allergist that this could trigger anther bronchitis attack. I have had 5 of these in the last 1 1/2 years. Each successive bout is taking longer to heal. Each attack has the potential to cause SCARING in the lungs....putting me closer to the COPD group...which I'm fighting hard not to be part of.

For the record when I have used the CPAP my pain level has gone down. I'm not as tired as before CPAP. Even though getting use to the entire idea of CPAP has been difficult I have found it has merit.

Medications:
Nose sprays I have used: Flonase, Nasacort, Patanase, Astepro, Veramyst, Ipratropium Bromide. I'm sure there's more but don't remember at the moment
Pills-over the counter: Advil Decongestant, Sudafed, and Benadryl. Don't use those in the last two because they make my heart race.
Prescription: Zyrtec, Singular
Inhalers: Advair 250 or 500. Dr. has stopped these and switched to Dulera. Have used Albuterol but makes my heart race so don't use.
Rescue inhaler: Xopenex
Don't use a nebulizer because of albuterol. Can check with insurance and see if they will pay for xopenex and a nebulizer.

 I’ve gone through tier two allergy testing and are allergic to dust mites, cats, mold, ragweed and one other plant not present where I currently live.
 I’ve allergy proofed my home with wrapping my bed & bedding. Keeping bedding washed in hot water.
 I have a dehumidifier in the house and keep humidity to below 50% to kill any mites
 I have Oreck Air Purifiers in my living room and one next to my bed.
 I use a Dyson vacume.

Current meds:
Veramyst & Dulera, Singulair. Nexium & Verapamil….and Afrin
Vitamin D3 and Calcium/Magnesium


Equipment:
Machine: REMstar Auto A-Flex by Phillips Respironics
Humidifier: System One Heated Humidifier by Phillips Respironics
Masks:
1.) Foam nasal mask-loaner from the sleep center…don’t see name on mask
2.) Comfort Gel Blue-Phillips Respironics
ResMed Tubing Wrap
Hose Buddy-keep my hose up off the pillow/not get caught.

I wash my hose, head gear, humidifier unit and mask weekly.
I’ve changed out the allergy filter. It’s NEVER dirty.

[archangle]

Let me agree that it's crucial to stop using the over the counter (OTC) nasal spray.

These sprays shrink the swollen tissues in your nose, but they irritate the tissues, too. After you've used them for a while, your irritated tissues will swell up and block your nose even if there's nothing wrong with your nose other than the irritation caused by the nasal spray. Another dose of the spray will shrink your tissues and unblock your nose temporarily but cause more irritation. Eventually, even with the spray, your nose is just as blocked as before your used the spray, or blocked all the time.

Unfortunately, withdrawal can be a miserable experience for a few days until your tissues heal. Did I say MISERABLE? Unfortunately, it's necessary.

Lots of people get addicted to OTC nasal spray. They should really be stamped with a big "ADDICTIVE if used for more than a few days" warning on the label.

Some of the prescription nasal sprays don't have this particular problem, although they may have other long term problems. Astelin and rhinacort or similar formulas are examples.

If you can't get the nasal CPAP to work, full face or mouth only CPAP may be the only solution. You may be harming your heart and other organs without CPAP.

I find that if I lay on my side and find the exact right position for my head, the nostril on my top side will tend to unplug. It's hard to explain, but if I use a hard pillow, get my head tilted exactly right, adjust my pillow so that it's pressing on just the right part of my face, etc., I usually get a burning sensation in the top nostril and it will open up after a while. It might be hard to get the right side sleeping position with a CPAP mask on. I also find that sitting in the recliner with my CPAP mask on also makes my nose unblock. I understand you may not be able to do this due to back problems.

Maybe you can use some sort of wedge like this on top of the water bed? http://www.amazon.com/Sleep-Better-Visc ... B002GKBG32

After getting off the OTC spray, try high humidity/low humidity/no humidity for a few days and see if any of that helps.

[Breathe Jimbo]

You must stop the Afrin, period. It is notorious for its paradoxical rebound effect after 3 days. No weaning, as that will only prolong the paradoxical rebound. Cold turkey. The sooner the better.

When I have been sick with a head cold, the pressure through my nasal pillows has always opened my upper airway after 5+ seconds or so. The CPAP has prevented bronchitis, which I normally got pre-CPAP whenever I had a cold.

Your allergy doc should be board certified in asthma and allergies. The two go together as one certification. If your current doctor is not so certified, then find one who is. Perhaps I am lucky in that my allergy doc is not only so certified, but is himself a CPAP user. If you live anywhere near Pasadena, California, I can give you his contact info.

[radaddict]

Well, a bunch of folks have pounced on the "stop Afrin" bandwagon, so I'll take a more generic approach. If you have to use a nasal CPAP mask, then you've got to have clear sinuses. I suggest that you get professional help with that. I don't understand why your allergist has warned you that that a FFM mask could trigger a bronchitis attack - I think that needs to be bottomed out with your allergist and sleep doctor. There are bacteria filters that can be installed in-line with your CPAP hose that could possibly prevent a severe bronchitis attack (however I believe bronchitis usually starts as a viral infection that can lead to a secondary bacterial infection). Follow this link: https://www.cpap.com/productpage/Respir ... -pack.html

Good luck!

[roster]

I don't understand why your allergist has warned you that that a FFM mask could trigger a bronchitis attack - I think that needs to be bottomed out with your allergist and sleep doctor.

This also is something I don't understand. As someone pointed out earlier, whether the pressurized CPAP air enters through your mouth or nose it is going to go into your throat and lungs.

It is true that the nasal passages do some filtering and humidification but they certainly don't prevent all viruses and bacteria.

Janknitz said it well:

A full face mask with the correct amount of humidification for you will be great for your lungs--you will breathe clean, filtered, humidified air all night--nothing wrong with that.

The issue of restricting your therapy to a nasal mask needs to be seriously reexamined. It may be that your doctor holds a false superstition about full face masks.

As a final thought, most CPAPers who get clogged nostrils find that their mouth opens reflexively to allow them to breathe. Do you have dry mouth? Are you mouthbreathing while using CPAP? Do you know that mouthbreathing with a nasal mask causes the therapeutic pressure level to be lost and you can still be having many apneas? A FFM prevents this.

[BlackSpinner]

I was WARNED by my allergist that this could trigger anther bronchitis attack.

You need a new allergist. My bronchitis and my asthma have improved dramatically since being on cpap with a full face mask.

It is the same air you breath during the day (though actually is is cleaner when coming through the cpap machine) Have you been told to tape shut your mouth during the day? If not then a full face mask will only DECREASE your chance of bronchitis.

If you come down with pneumonia and end up in the hospital the first thing they will do is stick a full face mask on you with a cpap/ventilator - if that is ok for the hospital why should it not be ok for daily life?