Fungal infection?
I just remembered that several years back my son was using a steroid inhaler for his asthma. THe directions tell you to rinse your mouth after each use to prevent fungal growth. Well, he never did rinse his mouth and he began complaining that his mouth was sore and when I looked inside, he had white patches on the sides and on his tongue. The pediatrician diagnosed a fungus/oral thrush and prescribed an antifungal swish and spit. I have since forgotten the name of it. It did work and he went off the inhaler for awhile. Now he never forgets to rinse out his mouth.
I wonder if the nasal steroid inhalers can also cause the same problem?
I also use a steroid nasal spray 20 minutes after I use the Neilmed sinus rinse.
Again, I wish you good luck.
I wonder if the nasal steroid inhalers can also cause the same problem?
I also use a steroid nasal spray 20 minutes after I use the Neilmed sinus rinse.
Again, I wish you good luck.
- jskinner
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Just thought I would give an update on whats been happening. Yesterday I saw a second ENT about the problem. This guy said he saw no structural problems with the nose and its appear to be largely an inflammation issue causing the blockage. He disagreed with my GP and didn't think it was a fungus problem.
He didn't really have any new ideas other than to try a different corticosteroid to see if possibly a different molecule would work better. He switched me to Nasacort AQ.
He said that if we where unable to get the swelling under control that I may have no choice but to consider a tracheotomy!
This didn't seem right to me for a number of reasons. I used CPAP for 4 months and didn't have this problem. Although he said maybe it just took time for the CPAP irritation to get bad enough to be an issue. However I have been using mostly the Oracle mask for the last month so I'm not convinced since the nose should have gotten better without the air blowing in there. In any event it seem like there should be other surgical options before a going to the extreme of a tracheotomy?
Anyway its all pretty frustrating. It seems like every doctor has a different opnion...
He didn't really have any new ideas other than to try a different corticosteroid to see if possibly a different molecule would work better. He switched me to Nasacort AQ.
He said that if we where unable to get the swelling under control that I may have no choice but to consider a tracheotomy!
This didn't seem right to me for a number of reasons. I used CPAP for 4 months and didn't have this problem. Although he said maybe it just took time for the CPAP irritation to get bad enough to be an issue. However I have been using mostly the Oracle mask for the last month so I'm not convinced since the nose should have gotten better without the air blowing in there. In any event it seem like there should be other surgical options before a going to the extreme of a tracheotomy?
Anyway its all pretty frustrating. It seems like every doctor has a different opnion...
Well, I'm not a doctor, obviously, BUT I have a problem accepting that one steroid might produce better response than another steroid. Now one of the other ingredients in the steroid spray might produce better results, but I fail to see how a different steroid would do so.
In addition to which, if there are no structural problems, then I sure wouldn't consider any other type of surgery on the sinuses or snozz!!!
On the other hand, a temporary tracheotomy "might" provide the complete cessation of irritation to the nasal and sinus passages needed to heal the inflammation. I am ASSUMING he is talking a TEMPORARY tracheotomoty???
Since this has been going on so long there "might" be some reason to be concerned about scarring forming in the nasal passages and sinuses if it continues. And THAT could cause a more long lasting type of problem even to the point of requiring surgery. (You've heard of adhesions after abdominal surgery). Every surgery leaves scar tissue, altho for most people the scar tissue (adhesions) don't cause problems, for others they do. I sure would want to avoid surgery on a narrow area such as the nasal passages.
Its too bad at least one of these doctors wouldn't do a PROPER culture and sensitivity of both the nasal passages, especially those white spots, AND the sinus cavity just above. Hindsight being better than foresight, its too bad you didn't think to INSIST that a proper culture via the long wire "swab" be done by this ENT.
I "think" I would give this new steroid nasal spray a reasonable try. And if no relief, I'd be inclined to stop ALL treatment except some type of safe topical, gentle, healing cream and give that a try. Consider how we treat badly chapped hands or dry, cracked lips. While salt water can be healing, it can also cause irritation. Just think of salt on a raw sore!
Meanwhile you might want to explore this tracheotomy option in more detail. Just what is entailed, how the procedure is done, is it temporary, what long lasting effects if any, etc.
Good luck and God bless!!!!!
In addition to which, if there are no structural problems, then I sure wouldn't consider any other type of surgery on the sinuses or snozz!!!
On the other hand, a temporary tracheotomy "might" provide the complete cessation of irritation to the nasal and sinus passages needed to heal the inflammation. I am ASSUMING he is talking a TEMPORARY tracheotomoty???
Since this has been going on so long there "might" be some reason to be concerned about scarring forming in the nasal passages and sinuses if it continues. And THAT could cause a more long lasting type of problem even to the point of requiring surgery. (You've heard of adhesions after abdominal surgery). Every surgery leaves scar tissue, altho for most people the scar tissue (adhesions) don't cause problems, for others they do. I sure would want to avoid surgery on a narrow area such as the nasal passages.
Its too bad at least one of these doctors wouldn't do a PROPER culture and sensitivity of both the nasal passages, especially those white spots, AND the sinus cavity just above. Hindsight being better than foresight, its too bad you didn't think to INSIST that a proper culture via the long wire "swab" be done by this ENT.
I "think" I would give this new steroid nasal spray a reasonable try. And if no relief, I'd be inclined to stop ALL treatment except some type of safe topical, gentle, healing cream and give that a try. Consider how we treat badly chapped hands or dry, cracked lips. While salt water can be healing, it can also cause irritation. Just think of salt on a raw sore!
Meanwhile you might want to explore this tracheotomy option in more detail. Just what is entailed, how the procedure is done, is it temporary, what long lasting effects if any, etc.
Good luck and God bless!!!!!
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Hi James -It seems like every doctor has a different opnion...
Dunno if you would like another one (gratis), but I have a couple of questions for you. Rather than playing 20 questions and grilling you in a public forum, if'd you like, send me a PM.
If there is something interesting to learn, I would leave it to you as to how much you'd like to share with others.
Hope you're feeling better soon.
drB
Dead Tired? Maybe you're sleeping with the Enemy.
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Know Your Snore Score.
- jskinner
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Just wanted to give everyone an update. I went and saw my GP on Friday. He felt there had been some swelling reduction but wanted to reduce the swelling more by having me take decongestants for a few days. I tryed to resist this by telling him that the rebound would be too great a price to pay but he dismissed this (in fact he acted as if he had never head of decongestant rebound)
Anyway I took the nasal decongestant spray all weekend (Afrin twice a day) and it improve things greatly of course. I had the best couple of sleeps I have had in months and I was able to switch back to nasal CPAP which controlled my apnea a lot better. It was great while it lasted.
However last evening I went downhill when I went over to a friends place to watch a movie. She has cats and by the time I left my allergies where doing nuts and my nasal cavities where all swollen up again. Went home and took some spray but this time it was unable to open up the passageways sufficiently. It was a horrid night and by morning when I woke up I realized that I had not been getting enough air though the night and that I felt terrible.
Went back to the GP this afternoon. His inspection of my nose confirmed what I felt, the swelling was back as bad as it was when we started treatment. He said he didn't know what to do next. He decided on the following:
1. Nasal decongestant spray to control swelling (seems like a bad idea to me but he wouldn't budge. He said he didn't know what else to do to control the swelling)
2. A second round of the antifungal Lamasil
3. A third round of antibiotics, Biaxin (first was Avelox and second was Biaxin)
I really feel like my GP is just guessing at this point. In fact he as pretty much admitted that he doesn't know what to try next. Is there no type of specialist that could actually use tests to find out what is going on in there?
__
Anyway I took the nasal decongestant spray all weekend (Afrin twice a day) and it improve things greatly of course. I had the best couple of sleeps I have had in months and I was able to switch back to nasal CPAP which controlled my apnea a lot better. It was great while it lasted.
However last evening I went downhill when I went over to a friends place to watch a movie. She has cats and by the time I left my allergies where doing nuts and my nasal cavities where all swollen up again. Went home and took some spray but this time it was unable to open up the passageways sufficiently. It was a horrid night and by morning when I woke up I realized that I had not been getting enough air though the night and that I felt terrible.
Went back to the GP this afternoon. His inspection of my nose confirmed what I felt, the swelling was back as bad as it was when we started treatment. He said he didn't know what to do next. He decided on the following:
1. Nasal decongestant spray to control swelling (seems like a bad idea to me but he wouldn't budge. He said he didn't know what else to do to control the swelling)
2. A second round of the antifungal Lamasil
3. A third round of antibiotics, Biaxin (first was Avelox and second was Biaxin)
I really feel like my GP is just guessing at this point. In fact he as pretty much admitted that he doesn't know what to try next. Is there no type of specialist that could actually use tests to find out what is going on in there?
__
Last edited by jskinner on Mon Feb 12, 2007 2:22 pm, edited 1 time in total.
What about an infectious disease consult for the fungal aspect? Is there a Canadian equivalent of the NIH that you can check for studies that are ongoing that may cover this? Is the Lamasil oral pills or topical? My experience with the oral pills is they pretty much wipe out anything fungal pretty quickly, but at least here in the States I had to appeal to get coveage by my insurance for them, not sure really how it works in Canada since it is national healthcare. I do hope your doctors figure this out and you get better soon.
TM
TM
Not to be flippant, but I agree......stay away from the cats!!! Next time it's movie night, invite your friend to your place.
Another thought....if you're allergic to cats, what else might you be allergic to? Pillows, carpets and bed covers have dust mites and dander. Any possibility of food allergies??
I've been following your saga for a while now and it seems to me that your Dr. is just taking shots in the dark. Maybe go see an allergist and get tested? There's a test they do now on blood they take from you and involves no discomfort other than a little "stick" when they draw the blood.
Anyway, good luck and keep us posted.
Kajun
Another thought....if you're allergic to cats, what else might you be allergic to? Pillows, carpets and bed covers have dust mites and dander. Any possibility of food allergies??
I've been following your saga for a while now and it seems to me that your Dr. is just taking shots in the dark. Maybe go see an allergist and get tested? There's a test they do now on blood they take from you and involves no discomfort other than a little "stick" when they draw the blood.
Anyway, good luck and keep us posted.
Kajun
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Hi James,
I've also been reading your story for a while and it makes me sad for you. I can only imagine how horrible you must feel.
I don't know anything about fungal infections. However, I do have some other knowledge that I would like to share with you. Maybe some of it will help.
ENT Experince
Sandy
P.S. I agree about the cats. Really. You're in no shape to add cats to the equation.
I've also been reading your story for a while and it makes me sad for you. I can only imagine how horrible you must feel.
I don't know anything about fungal infections. However, I do have some other knowledge that I would like to share with you. Maybe some of it will help.
ENT Experince
- I have chronic sinusitis which took me to the ENT. I want to share some things she told me about investigating sinus issues.
First, she said there's no way for a doctor to really see what's going on in your sinuses. It requires a CT. My GP had done an xray of my sinuses and my ENT said even an xray really isn't very useful. My CT showed I have a deviated septum - it deviates to the right, which makes sense since it's my right sinuses that always hurt first. There are also connecter things between your sinuses and mine are very narrow, which can inhibit drainage, I think. While my CT showed structural issues, maybe a CT for you would show other things like fluid / how extensive your swelling is?
Second, she recommended the allergy blood test to see if it's allergies causing my sinus issues. She did tell me if you ask an allergist, they prefer the skin test. She also said I might end up needing a skin test but the blood test is a good place to start. Plus, it's really quick. Well, not the results part, but the test part. The blood test showed I am nearly off the charts allergic to grass pollen. It didn't answer my sinus issues because it's not grass pollen season. But, it's good information for me to have.
She said I could choose to do the CT or the blood test or both. I went for both. I'm glad to know the things I now know about my sinuses as well as my allergies.
I just wanted you to know maybe there's a doctor out there who will order some more extensive tests for you. I know there were some other posts about the fact that your doctor took a swab but didn't go up into your sinus - the questions people asked about that kind of correspond to my ENT's opinion - the part you can see doesn't tell you much.
- I see on your profile you're using a M-series heated humidifier. I have the same. Are you sure yours is working? I'm asking because mine isn't. The water vapor doesn't seem to be making it into my hose. I find it inside the humidifier (outside the tank) and it's also leaking into the humidifier base.
I learned the hard way just this weekend that my sinuses cannot handle non-humidified air. Wed, Thur, Fri my humidifier wasn't working, but I still used my CPAP (each night I kept hoping my adjustments to the seals would make it work). Saturday morning, I had major sinus pressure. I didn't sleep with my CPAP Saturday night. Sunday morning I had major sinus pressure again. I laid with a heating pad on my face for about an hour. The pain eventually subsidied later Sunday. I didn't sleep with my CPAP last night. No pain or pressure today. I'm kind of surprised about this, but it's the way my sinuses seem to be.
I'm not trying to imply your problem is solely possibly your humidifier. But, it's additional information for you that might be useful.
Sandy
P.S. I agree about the cats. Really. You're in no shape to add cats to the equation.
- jskinner
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Agreed. Strange things is that up until 3-4 years ago I never had problems with allergies and always had cats around. In fact up until June of this year I had a cat myself. I finally had to get rid of her since I was desperately trying to figure out why I felt like I could not breath during the night. The combination of sleep apnea and allergies was not good.TXKajun wrote:stay away from the cats!!!
I've been seeing an allergist yearly for a few years now. Have been tested and my two allergies are to cat and dog. My GP sent me back to the allergiest in Dec when all this started and I was retested, nothing new showed up. I've been taking allergy shots for about 2 years now.TXKajun wrote:Maybe go see an allergist and get tested?
Being around cats has bothered me for a few years now but ever since mid Nov things just seem to go bonkers. My reactions seem to be extreme. I had a strong reaction to my aunts house (who has no animals), to a friend house (who has a mold problem) and two instances of cats.
Its it possible that the years of untreated sleep apnea has done something to my immune system? Hmmm I just don't know.
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- jskinner
- Posts: 1475
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Its not even clear to me if this really is a fungal infection... That was the GPs idea a few weeks back but its never been proven.SleepySandy wrote:I don't know anything about fungal infections.
My GP ordered one on Feb 7 (when the culture came back negative) but I'm still waiting to hear back from the hospital as to when it will actually be taken.SleepySandy wrote:maybe a CT for you would show other things like fluid how extensive your swelling is?
Yeah I go though almost a full take of water per night, so it appears to be working. When I first started having this problem I was only using passover humidification or a level of 1-2 as it seemed to be enough. Initially I though this might have been what started the problem as things might have gotten to dry. Once things got bad I bought a hose cover as turning it up caused rain out. Now with the cover I keep the humidifier at 4 or 5 all the time. If I leave it at 5 the tank will often run out of water by morning. (had to use it at level 5 with the Oracle mask and with it had a 10 setting....)SleepySandy wrote: see on your profile you're using a M-series heated humidifier. I have the same. Are you sure yours is working?
I'm always surprised when someone says they are able to go a night without CPAP. There is always the talk about being compliant as well. If I even fall asleep for 20 minutes without the machine I wake up with a splitting headache and am wiped out for the rest of the day. Compliance will never be an issue for me because the physical pain of not using it is to great. I envy all of you who can take a night off if really needed...SleepySandy wrote:I didn't sleep with my CPAP last night.
Thanks everyone for your ideas. I really appreciate support.