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Update on My Sinus/CPAP Situation
Hi guys--haven't been very visible on SG for awhile. I've been busy working on getting well and seeking a variety of medical interventions to get past this intractable sinus infection I've had since starting CPAP.
To date, I've been on 3 antibiotic regimens, the first of which failed totally. Then had two 10-day rounds of Levaquin 500. That was slowly helping but not eliminating symptoms. Saw a local ENT who added both a 6-day steroid pack and an Rx nasal spray (I forget the name--it was some kind of steroid also). THAT whole combination finally did the trick. I've been symptom-free for the first time since August, for about a week now. Had a CT scan a week ago--saw ENT again today with films in hand--they show sinuses clear now, absolutely no structural problems, no jaw problems, nothing that's a risk factor for OSA. He DID acknowledge my tongue scalloping as evident of an oversize tongue which, per Dr. Park, is a marker for possible sleep apnea due to the way the tongue can fall back into the throat and block it while sleeping.
So the upshot of all this is, per ENT, I'm having allergy testing done on March 2nd. He wants to rule that out before he proceeds with whatever Rx therapy I may require to manage the sinus issue while I'm on CPAP. I will NEVER allow this sinus business to exacerbate to the level that it did for over 5 months!! It got unbelievably ugly......
I've never had any type of allergy, sinus problem, breathing problem, etc. before and I'm 67 years old. So if it turns out I now have an allergy or allergies, it'll be a surprise to me. But I'm not ruling out anything at this point. Something that's clearly related to CPAP use DID cause all this to crop up. Remains to be seen what needs to be done, but something does if I'm gonna remain compliant. And I AM going to be compliant again!
I've been off CPAP for nearly 3 weeks now because I was just too sick and couldn't tolerate it anymore. ( I'd been 100% compliant for 5 1/2 months prior, ever since I began treatment). I'd prefer to wait till after the allergy tests are done, but I'm really not comfortable with being off CPAP any longer. SO....I'm gonna give it a crack and see what happens. Makes me nervous, but I know I need it.
What I also know is that I need a re-titration to be certain my pressure's appropriate. Am not having much luck communicating with my sleep MD. Big practice--too many layers required to reach the doctor. Plan to remedy that tomorrow, one way or another. I have access to another sleep clinic that will accommodate my need for re-titration and will take that option if I don't make some headway with my own sleep doc tomorrow.
So.....there it is in a BIG nutshell!! Those of you who are newbies probably have no clue what I'm talking about--others who have been supporting me for quite some time will, I hope, understand why I've been off SG temporarily. Just too much going on, and I needed my energy to climb through all this treatment process. It's not over yet, but things are being ruled out now, and I'm feeling better for sure.
I so appreciate all the help I've gotten all these months from SG. And will be back just as before once I can kinda gather myself up and get a clear idea of how to proceed. It's been a long, miserable haul.....I'm grateful for the progress I've made and that I've had such good medical help and support from you guys. If it weren't for SleepGuide, I'd have quit treatment without a doubt. It's been here that I've drawn the strength to keep going as I now know I absolutely must. There's been many a night, when I was too sick to even get online, that I came to SG and just listened and lurked!!!, drawing energy from the ongoing support you all were giving each other.
I've said it before--I'm sayin' it again--SleepGuide Rocks!!!!!
I'll be back as soon as I can. Will know a lot more in a couple of weeks+......
Susan McCord :-)
Views: 251
Replies to This Discussion
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Permalink Reply by Mary Z on
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Susan, I'm sure glad you're finally feeling better! What a lot of work for you!
Mary Z.
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Permalink Reply by susan mccord on
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sm
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Thanks, Mary. I sent you a PM.
Susan :-)
Mary Z said:Susan, I'm sure glad you're finally feeling better! What a lot of work for you!
Mary Z.
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Roger, it's good to hear from you. Seems like I've been gone a long, long time......I appreciate your support.
Susan :-)
99 said:very pleased to hear from you susan
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Permalink Reply by RL on
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Hi Susan,
I did notice the warmth of your presence missing lately. Glad to hear you are feeling better as you find out what will be required of you next. I am learning from you even when you are not immediately present with following of your journey on past posts. I am learning that even with the best of efforts, coping with xPAP therapy is variable, takes endurance, commitment, and humor. You demonstrate all of these. Same for Judy (in MI). And many others. Thank you for that.
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RL--honestly, I've gotten so much support and kind understanding on here, RL--it makes it nearly impossible not to participate fully when there are so many really committed people on SG. I'm happy to know that my input may be helpful to you--it's all one big circle to my way of thinking--it goes around and it comes around. You, too, have been a memorable member of this bunch of fellow travelers, ever since you came on. So after you're done giving ME cyber-hugs, give YOURSELF a few, my friend!!
Susan McCord :-)
RL said:Hi Susan,
I did notice the warmth of your presence missing lately. Glad to hear you are feeling better as you find out what will be required of you next. I am learning from you even when you are not immediately present with following of your journey on past posts. I am learning that even with the best of efforts, coping with xPAP therapy is variable, takes endurance, commitment, and humor. You demonstrate all of these. Same for Judy (in MI). And many others. Thank you for that.
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Permalink Reply by Carl Speas on
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Hi Susan, I glad you are feeling better and it is great to hear from you.
Carl
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Permalink Reply by sleepycarol on
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Susan it won't surprise me one bit if you have developed allergies. Allergies can and do crop at any time. You may go years and never have a problem, then you develop a reaction to something. At times it can be difficult to rule out exactly what you are allergic to. Many times, allergy testing may not give a clear picture of what you maybe reacting to.
I have severe allergies and have fought them for years. I have seen two different allergist and both have told me I am highly reactive and they are pretty sure that the testing doesn't show up everything I am allergic too since testing is limited.
Not to be a downer, but want you to be aware it make take time to rule out certain allergens. I have tried the shots, and for many they do help. Unfortunately neither doctor was able to find the right mix that improved mine. I tried the shots approximately 3 years each time with no improvement in symptoms.
Good luck and hoping you find the answers soon!! Hang in there!!
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Thank you, Carl. I've appreciated your kindness so much.
Susan :-)
Carl Speas said:Hi Susan, I glad you are feeling better and it is great to hear from you.
Carl
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Thanks, Carol. I know from nothing about allergies. This medical group seems to have a lot of faith in their testing, so I'm just gonna trust it for now. I have a hard time believing that, even if I DO have allergies, they're as severe as what you describe. You've REALLY had a long haul. Still do. Re: me, I'll know more in a couple of weeks. I think I go 3/2. Not especially looking forward to getting stuck that many times but I'm sure I'll survive!! They show movies while they stick you!!, at least these folks do. It takes 3 hours and if they find something it can take 4--(?) why, but I guess I'll find out.
Susan :-)
sleepycarol said:Susan it won't surprise me one bit if you have developed allergies. Allergies can and do crop at any time. You may go years and never have a problem, then you develop a reaction to something. At times it can be difficult to rule out exactly what you are allergic to. Many times, allergy testing may not give a clear picture of what you maybe reacting to.
I have severe allergies and have fought them for years. I have seen two different allergist and both have told me I am highly reactive and they are pretty sure that the testing doesn't show up everything I am allergic too since testing is limited.
Not to be a downer, but want you to be aware it make take time to rule out certain allergens. I have tried the shots, and for many they do help. Unfortunately neither doctor was able to find the right mix that improved mine. I tried the shots approximately 3 years each time with no improvement in symptoms.
Good luck and hoping you find the answers soon!! Hang in there!!
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It is good to get thoroughly checked for allergies if you have that option, but it may not provide a final answer or solution to the symptoms. As I have recently learned, there is something called Vasomotor Rhinitus. I have suffered from frequent sinus issues for several years, occasionally knowing it was a virus or even bacterial infection, and at times, allergies. However, the symptoms seem to persist despite addressing the bacterial infections with antibiotics, the allergies sources going away and doing saline nasal rinses. I was getting concerned about my chronic use of antihistamines, decongestants, and pain relievers (all OTC) as these all have side effects that could increase with long term use and contribute to other serious health conditions. My definition of a "good day" was one in which I felt decent without taking any of the mentioned medications. These good days were generally 1-3 per month. Having just had a cold virus prior to starting CPAP therapy, I immediately got a mild bacterial sinus infection, which was successfully treated with one series of antibiotics. In addition, I began taking a new Rx for generic flonase - a corticosteroid nasal spray. Having never taken this medication before, I did a little research on it, through which I discovered the term "vasomotor rhinitis". This is very interesting to me as this condition has the same symptoms as other types of rhinitis (bacterial, allergic) but is idiopathic in nature, with specific cause often being unidentified. The recommendation seems to simply be to avoid any "triggers" if you can identify them. Something Dr. Park said somewhere (sorry I don't remember exactly where) made me think of this also, something related to the swelling and sensitivity of nasal blood vessels. This makes more sense to me than anything else so far, for myself. I do occasionally have a virus or bacterial infection, but the vasomotor rhinitis condition better explains my ongoing nasal congestion and sensitivity. For me, there may be a migraine component as well. It would not be surprising to me, for you to find that the forced air, warm or cold, from your xPAP could trigger a vasomotor rhinitus reaction, as you state you never had this type of symptoms prior to CPAP use. If this were the case, it could make you more susceptible to sinus infections periodically, but the infections not being the original cause of symptoms and thus, symptoms not being eliminated completely with resolution of infection.
I have found some relief using the generic flonase every day, but am not sure what long term use of this medication would cause if anything. It has reduced but not eliminated my use of antihistamines and decongestants. I suggest you may want to do a google search on Vasomotor Rhinitus to get an overview of the condition, for help with understanding your own situation. One site I found with a good general overview is http://health.nytimes.com/health/guides/disease/vasomotor-rhinitis/...
Another consideration for you may be that as we age, our immune system is generally considered to decline in strength, leading to greater vulnerability to many things we never had before. It may be helpful to learn about things you can do to generally increase and support your overall immune system.
It will be good to know if you do have an allergy component to your suffering, and I know you won't give up if that does not entirely resolve your symptoms. I can relate to your experience as I seek solutions to this seemingly endless sinus pain and discomfort. I don't think the CPAP therapy has made my condition worse, and not sure if better, but I have been able to stick with it through the ongoing sinus challenges so far. I expect you will find a balance with it in time.
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