In Distress

[Lee Lee]

I am so upset and I just don't know where to begin. I don't want to sound dramatic, but I have nowhere to turn for a solution to my problem. I'm writing in hopes someone can give me any ideas about what to do. This might be long.
I have posted about my nasal passages being inflamed and sore when air moves in and out, but I'm going to start at the beginning.
I was faithfully using Neil Med sinus rinse and Nasonex for years, actually, ever since CPAP. I developed this inflammation back in October and I stopped both the rinse and the Nasonex. During that time, I started waking up in the middle of the night was the most excruciating pain in my nose. My eyes would be pouring tears and the mask was intolerable. I would lie there awhile, praying for the pain to stop. After a while, I was able to put it back on and sleep for a while. Then the sneezing started. Violent racking sneezes, so bad that I had painful muscle spasms in my back and shoulders. My nose just poured all day , and I could not be without tissue for even a second. I couldn't breathe through my nose without pain.
My husband thought it was our air filters, so he changed them. We then bought new air purifiers for our rooms. No help.
I went to the doctor finally, and they did a culture. They thought it was MRSA at first, but it isn't. They described it as a very heavy bacterial infection. I am now on my third round of antibiotics, including Cipro and Levaquin. I have been through 5 rounds of a gel for inside the nose, called Bactroban. The gel seemed to create a buffer, so I could tolerate my mask. I got better for a few days, and then once again woke up with the terrible searing pain in my nasal passages. I went back to the doctor and they said just hang in there with the Levaquin.
I got better for a few days again, but now it's worse than ever. Last night was awful. I barely slept.
I have turned the pressure down in my machine. I have changed my filters. I have disinfected everything. I changed my tubing. I changed the tubing cover. I have tried humidification, which I don't usually use. I have gone to a full face mask, which I hate, but it seems to help, because I can mouth breathe if necessary.
I have a job. My boss has been worried about me and has asked me to take medical leave for a few weeks to get this fixed. She's being nice, but I can tell she's getting impatient. I'm scared I'm going to lose my job. I need to be there everyday.
My imagination is now running away with me. Could my machine be contaminated? Have I deviated my septum? Is this withdrawal from 3 years of nasal steroids? I used to love my mask and my Cpap, now I'm afraid to go to sleep.
Anybody have any idea? Heard of this before? HELP!

[Gerryk]

You said you used to flush your sinuses and used nasonex. You quit both. I used to flush daily but didn't need it. Now I only flush when I need it or when I get a cold or infections. My doc told me to make sure I flush when I have a cold or infection as it will prevent it from getting worst.

I would either begin flushing again or talk to your doc about starting to flush again. I remember your post a while ago about this and figured the problem was gone since you hadn't posted on it again.

Now you said you use the neilmed bottle. I use the grossan hydro pulse. I will put the link at the end here. This thing is about 100 bucks but I would pay that a month if I had to in order to use it. I also use their solution as it is a better buffer than most and will help protect your nose. I use the breath ease xl to flush with and sometimes add a little sea salt but they also have clear eaze natural enzyme packets which may help you out a bunch. Maybe you can call them and ask if those packets would help you and try them, which you don't need anything special as you can use your present nasal flush bottle for. You can also use the breath ease xl packets with the bottle you use.

I am not affiliated wtih them, I am just a very pleased customer. I swear by this.

Hope that helps and wishing you well soon.

Gerry

Ok, I forgot the link so here it is.
http://www.hydromedonline.com/catpages/cat_sinus.html

[harry33]

with your full face mask, you could stop nose breathing when asleep with some sort of clip on the nostrils, I think a mouth only CPAP mask is available that includes a nose clip

I hAvent heard of germs growing in a CPAP machine but your airhose and mask would need regular soaking in chlorine bleach or vinegar and cold water, then washing gently with warm wather and mild detergent

some of us get help for chronic nostril and sinus infections from a netti pot or other things that can be bought via the net
google' nasal and sinus irrigation'

[Babette]

I think you need to see an ENT or Pulmonologist, not just your regular doctor. If you don't have one, call your PCP's office and get a referral, or call your sleep lab and get a referral.

I think at this point, you do need to take a few weeks off work. Apply for FMLA, and make some doctor appointments, and spend your days off working on this. Your employer has definitely said they are worried about you, and your condition is apparently distressing to your coworkers to watch. Please do take some time off. I've worked with people who should have been home taking care of their health. It's not fun for anyone. We'd much rather cover your workload than be witness to your distress.

Good luck!!!!
Barbara

[roster]

I think you need to see an ENT ......

My ENT is in a practice with a sleep doc. If you can find a good recommendation for an ENT in practice with a sleep doc, then consult with him. He will know a good bit about CPAP problems.

[Muse-Inc]

...grossan hydro pulse...their solution as it is a better buffer than most and will help protect your nose...breath ease xl to flush with and sometimes add a little sea salt but they also have clear eaze natural enzyme packets which may help you out a bunch. Maybe you can call them and ask if those packets would help you and try them, which you don't need anything special as you can use your present nasal flush bottle for. You can also use the breath ease xl packets with the bottle you use...http://www.hydromedonline.com/catpages/cat_sinus.html

I also have the Grossan nasal irrigator...it works! Developed by an ENT, the solutions work without compromising the beating action of the cilia (tiny hairs that line the mucosa and move the mucus along to sweep up contaminants) or irritating these delicate tissues. You need to make sure you do not have a fungus infection too, some forget to ck for fungus. IMHO you need to be irrigating but I'm not a doc; my ENT recommended nasal irrigation 20 yrs ago so when I'm congested and during the Spring pollen season, I use the Grossan. Doc Grossan developed it for divers (who cannot dive when congested and must surface quickly if congestion develops underwater) and for firemen (smoke particles are esp damaging to tissues) both of whom are often plagued by congestion. Good luck on finding a quick effective solution! Try sipping hot tea (water) as the steam helps the cilia do their thing.

BTW, the sneezing might also be aggravated by what you are cleaning your mask with. I react with major congestion to soap residues so must use an eco-friendly soap to wash off the Dawn which cleans the best, then spray everything with white vinegar to get rid of the last traces of the soap. After sitting a few mins, I rinse everything very very well, then let air dry....annoying routine but a necessity to keep my nasal passages and skin happy . Sneezing night also be dehydrating, so drink lots of water which also helps the mucosa.

[montana]

I would only use irrigation with an ENT recommendation. I used to use the neti pot and found out it irritated my sinus. I now use Flonase every night and have never had a problem. I only clean my mask with castile type soap.

[Irene P.]

The only time I ever had really painful nasal tissues is one night I didn't use the humidifier. Are you using yours regularly?

[YawnGirl]

I'm so sorry you are so miserable. I too had a horrible bacterial sinus infection a few years ago and had to have 2 ten day rounds of levaquin to get rid of it.
Your job should be protected under FMLA for up to 12 weeks in a 12 month period if you qualify. You do not have to take all the days consecutively. "Chronic conditions" are covered. Please check this link:

http://www.dol.gov/whd/regs/compliance/whdfs28.pdf

[Lee Lee]

You people are so wonderful, I don't feel so alone.
Babs- I made the appointment. Can't see the ENT until Dec 30. UGH.
Irene- I did use the humidifier last night, even though I don't usually as it aggravates my asthma.
I will also look in to the irrigator, but I'm thinking my nose needs a break right now.

I wore the FP HC 432 full face last night, and it leaks, but I slept for a few hours. Snowed in today in the DC area, so maybe I can get a nap . With some rest, maybe I'll feel less helpless. Still in pain this morning and I only have 2 more Levaquin.
Thanks for caring,
Lee Ann

[Raj]

Good advice above and I'm glad to read that you made the appointment. It won't cure a bacterial or fungus infection once you've got one (although it may reduce the symptoms), but I'd suggest you take a loratadine pill (any generic form of Claritin) shortly before bedtime if you aren't doing so already. I've found that the allergy-suppression effects of loratadine prevent my nasal passages and sinuses from developing the kind of irritation that makes me susceptable to infections.

I'm so sorry you're having such a rough time.

[Gerryk]

all that snow will add moisture to the air. If your nap is better than normal sleep I would think the moisture would help. Do you have a humidifier for the house or check the humidity?

I swear by nasal flushing. My sleep doc is an ent and she swears by it and gives each pt a neilmed packet with a bottle and sample packets to flush with. My regular family doctor who is a respiratory specialist also swears by nasal flushing, and a good friend of mine who is also a sleep doc and ent swears by it.

It's not really that bad or nasty to irrigate.

Gerry

[entconsult]

In the July issue of the Journal of Rhinlogy they report a very high incidence of contamination in the type of irrigation bottles that have flowback. In the article by Nsouli in the Allergy literature about 60 % of his chronic sinus patients were "cured" when they stopped using flowback irrigators. Check with your doctor on this and be absolutely sure you are not reinfecting yourself from a contaminated irrigator with flowback.

[sleepycarol]

Okay I am dense, but here goes --

What type of container would cause a flowback?

I have used the Neil Med squeeze bottle, but not on a regular basis.

[entconsult]

YOur question re flowback. Many of the squeeze bottles, when you release the squeeze there is a vacuum that suck in from the nose. IN the Journal of Rhinology article the patients were on antibiotics and still the containers were contaminated after one week of use. Also the Neti pot, when you tilt the head back, the nasal contents go back into the pot.