In Distress

LeeLee,

So sorry to hear of this setback. I know that fear well (both the job & the sore nose )

Have had bouts of sinus infection & it really messes up cpap therapy. I am back to nasal
rinse myself but find I have to not do it every day as after awhile my throat & nose feels
like a salt mine.

I hope the other posts have given you inspiration as all I can suggest is the rinse & that
may not be the answer.

Good luck

DSM

entconsult wrote: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.

Which article is that, if you please? (Please give the exact reference).

Lee Lee, I'm so sorry to hear you're having such a hard time. I agree with the those who said you have to find an ENT who understands your need for CPAP and how not using it may affect your health. You need that ENT even it's only to tell you to take a break from CPAP and let your nasal cavity heal.

I'm not saying take a break from CPAP, I'm not saying go on with CPAP. I have no idea which is right for you. I am saying "talk to someone who understands all the implications".

Take care, I hope you'll feel better soon.
O.

If there is any concern that there might be bacteria coming from your machine, there is an inline bacteria filter available you can put in line with your hose.

Good luck solving this. It sounds downright nasty.

LeeLee~
Dr Rooney is an awesome ENT. He has offices in Fair Oaks and Vienna. Hope you get this resolved!

Lee Lee wrote: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

Don't forget to let your doctor know how often you used Nasonex. I know several people who used nasal spray long term that had horrible symptoms much like you describe after stopping the medication. Glad you have an appointment with an ENT!

By the way, I use a saline nasal rinse and have issues if I use tap water (city water) so when traveling I use distilled water. When home I use well water which works fine for me. I buy special salt for the saline rinse, that is made just for that purpose. It's important to use the proper proportion of salt/water. Let me know if you want more information on the brand of salt or other information.

Best wishes!

Thanks, people. I was using the Neil med sinus rinse, but have stopped for now, since I have such a bad infection. I don't want to push it up further into my sinuses by rinsing.
I have a sneaking suspicion this is caused by Nasonex withdrawal, I really do. When I first got the pain, using the Nasonex would sort of numb it. Two days later, here comes the pain, worse than ever.
I would love to go see a really good ENT ( I have heard of Dr. Rooney), but I start with Kaiser on Jan 1st. They are going to have their hands full. I hate the thought of changing Doctors during this, but I have no choice at this point.
I just feel I can't stop CPAP. My airway collapses even when I'm dozing on the couch!
What I have done is to start using humidity with a full face mask so that I can mouth breathe. The mask I've been using the last few nights is the FP 432, but it absolutely is the worst leaker I have ever seen. Last night, I was so desperate that I assembled my trusty Activa at 3AM and strapped it on. The pain worsened immediately so I took it off and put the "sieve" back on. I got a new Ultra Mirage Full Face and practiced with it today. Maybe it won't leak.
I am on my last day of Levaquin, but now a new problem has surfaced. I cannot open my mouth very far, as my glands are swollen and painful.I'm afraid the infection has spread. Will it never end???
I miss my 4 peaceful and wonderful years of CPAP therapy.
Thanks again to all. Having your support means so much to me.
Lee Ann

Lee Ann,

I'm so sorry to hear of your recent difficulties. I hope that your problems are resolved very soon.

~ DreamOn

If things are getting worst for you which it sounds like they are you should go back to your doc to tell him or be re evaluated. Something isn't right if it's getting worst.

Have you had any problems with your teeth or been to the dentist recently?

Gerry

Lee Lee wrote: I am on my last day of Levaquin, but now a new problem has surfaced. I cannot open my mouth very far, as my glands are swollen and painful.I'm afraid the infection has spread. Will it never end???

Lee Ann

If this gets any worse please go to ER, it definitely shouldn't be like that after all those antibiotics. I keep remembering all those Egyptian mummies who died due to infections in the jaw!

Oh, no! Now I'm going to have Mummy dreams!!

Get your head to urgent care asap

Lee Lee wrote:Oh, no! Now I'm going to have Mummy dreams!!

I thought about what Gerry said, wondering if you have had any dental work recently. In any case, call your doctor and tell them you need to be worked into their schedule and be seen right away as you think the infection is spreading to your lymph nodes and the pain is worsening. I'd say it in a tone that is very professional yet expecting them to do what you are asking.

I don't agree with Montana with the Urgent Care advice. I think Urgent Care physicians are trained for general treatment and are not as able to treat a specific issue. However, if after hours, during a holiday, or weekend when the ENT is unavailable, I'd go in a flash before taking a health risk.

Lee Lee, have you ever had your vitamin D levels checked? It is a actually a hormone not a vitamin and intimately involved with the immune system. With optimal levels, your body is able to effectively fight the slings and arrows of pathogens that surround us.

Lee Lee,
I'm not saying the following to frighten you, nor am I saying it out of "tough love". I'm saying it because the priorities have to be described clearly:

Breathing is you first priority, CPAP is not. CPAP blows the germs and pus deep into your nasal cavity at least as much as the rinse bottle, and perhaps even more.
Perhaps at this point you need a tracheotomy to help you breathe while you nasal cavity heals. It can be closed once the problem is over.

If any doctor tells you to stop using cpap, bring out your PSG oxygenation data, insist on your need to get oxygen at night, but don't just go on using the CPAP as though it were the only solution.

I hope you've gone to the emergency room by now.

O.

Muse- yes I have had the vitamin D levels checked and they were non-existant, so I take prescription supplements now. Also, I have Lupus, so I take immune suppressants. Between that and the fact that I used Nasonex for so long, which left me vulnerable to any random bacteria, I am a sitting duck. So to speak.
I have not had recent dental work, but I am terribly allergic to mold.

o- I did go back to the Doctor, but not the emergency room, as they were overwhelmed. We have had 2 feet of snow- unexpected for our area. Travel was impossible for a few days. Washington DC is just not prepared !
I am doing better now. The pain has lessened, and the glands are less swollen, so I may have turned the corner.
The full face mask is putting less pressure on the nostrils and I can mouth breathe. The humidity seems to hep as well.

I am not sneezing every five seconds. All in all, I think the crisis has passed. I do still feel a little stinging and imflammation, but not nearly as sharp as before.
I am still very afraid of what has happened to me, (that it will return). I'll be consulting with the specialist next week. I cannot bear to think of CPAP as my enemy as it has changed my life for the better.
Thank you with all my heart for you care and concern.
Wishing you a joyous holiday!
Lee Ann