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outofadream

Stubborn Sinus Infections?

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So I know a lot of us have sinus problems, but does anyone else here struggle with bacterial sinus infections you just can't get rid of? And has ANYTHING helped? I've had one for almost 3 months now, and even though they put me on five antibiotics, and tried two short bursts of prednisone (which didn't go too well), it's still not gone. The ENT is puzzled because the last CT scan (a few weeks back) seemed to only show a fairly mild infection, so he can't figure out why it's being so persistent.

I've honestly tried everything I can think of…Allegra for possible allergies, Nasacort, saline spray, breathing steam, doing the neti pot/irrigation thing every day, sleeping with a humidifier, ibuprofen couple times a day to try to cut down the inflammation, etc. I'm also supposed to be going in for allergy testing in a couple weeks, just in case that's part of the problem.

Has anyone else struggled with something like this? Could this have anything to do with the POTS, or some issue related to the POTS? Any thoughts/suggestions would be appreciated…I'm at a complete loss, and I'm getting pretty sick of the constant low grade fever and POTS flare madness this infection has created :0

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Has your allergy immunology doctor tested you to see if you have a primary immune deficiency? Your total quantitative immunoglobulins which are igg, iga, and igm and sub iggs should be tested when one can't clear an infection. You can read more about these at: http://primaryimmune.org

Immune problems can underlay and be the source of dysautonomia/pots like symptoms, not the other way around.

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Thanks so much for the suggestion! I'd been thinking maybe the POTS was causing some changes in blood flow that were increasing inflammation or directly causing some kind of inflammation that was making it hard to clear out…I honestly hadn't thought about something underlying both the infection and POTS.

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Have you ever broken your nose of have a deviated septum? I ask because once I had mine fixed I basically stopped having sinus problems. I do have allergies and stay on top of them which is also helpful.

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YES. I am in the same boat. I was actually diagnosed with chronic bacterial sinus disease years before the POTS/NCS dx. I've been through what feels like hundreds of rounds of antibiotics, have been allergy tested a few times with no positives. I don't have seasonal allergies, but I have a constant post-nasal drip, and when I get a cold I feel like I'm going to die. I've wondered if there is a connection as well. So far I have no answers.

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kJay, they told me that my septum is ever so slightly deviated, but not enough to cause trouble. I know what you mean though…my dad has a really deviated septum, and it gives him a lot of troubles with congestion/sinuses. Glad they could do something that helped you!

jknh, that really stinks! I know exactly what you mean…every time I get sick, I get that going to die feeling too, especially if I run a fever (and I don't know if this is true of you, but I run fevers with pretty much everything, even colds).

It's funny too because my POTS started just after an acute bacterial sinus infection…when I was diagnosed several years later, they told me they thought that could have been the trigger, but I've never been sure that they were right (they also told me I would probably grow out of having POTS, and that certainly hasn't happened).

I hope we both eventually get some answers! The ONLY information I've found so far has been links between beta blockers and sinus issues (don't know if that's relevant for you). Apparently beta blockers in general can cause post-nasal drip/non-allergic rhinitis? I also stumbled on this article about a possible link between chronic sinusitis and non-selective beta blockers: http://www.ncbi.nlm.nih.gov/pubmed/7992269
Again, no idea if that's relevant to you or anyone else, but it was enough that I decided to get off the low dose Nadolol I'd been on…so far, no evidence that doing so has helped anything though.

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The last couple of colds I've had, I have run a low-grade fever. But for me, that means a temp of around 97 or 98 F since my norm is in the 95-96 F range.

My symptoms got drastically worse after a sinus infection in 2007, but I had had fainting and fatigue issues years before that. My cardio thinks I've had POTS all my life and it just decided to make its presence REALLY known in my 20s for some reason. I haven't been on beta-blockers personally, but that's interesting. If that's what contributes to yours, hopefully with time it will ease up.

The dry winter air here in the US is really not fun for my nose right now. Ugh! Best of luck! :)

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I agree on the winter air! Its been pretty cold where I'm at (in the midwest), so I'm feeling it too. :( Every time I catch sight of your picture (which I like, btw :) ), start wishing it was spring already…

Also, in doing some searching, I stumbled across a possible link between dysautonomia and some of the sinus symptoms it sounds like we're having? I think there might have been posts about it here a couple years back, so this may be old news, but didn't see these particular articles…

From what I got out of this, there's an issue called vasomotor rhinitis, where you can get post-nasal drip in response to things like smells, chemicals/smoke, temperature changes, etc rather than allergens.:
http://www.aafp.org/afp/2005/0915/p1057.html#afp20050915p1057-b4

I got curious about it because the explanation for why it happens sounds like it has to do with the autonomic nervous system, and sure enough, there seems to be some link there:

Autonomic nervous system evaluation of patients with vasomotor rhinitis
http://www.ncbi.nlm.nih.gov/pubmed/11081594

Dysautonomia rhinitis: associated otolaryngologic manifestations and characterization based on autonomic function tests.
http://www.ncbi.nlm.nih.gov/pubmed/17050315

Again, I have no idea if this is relevant, but seems like it's at least plausible there's some link between POTS and the sinus issues. If this is what's going on, sounds like there's some possibilities for treating it (although who knows…it feels like everything having to do with POTS is such a tricky business). Best of luck to you too though, hope things get better as the winter wears on!

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Has your ENT run an endoscopy and collected a specimen for culture and sensitivity? I suffered from chronic and acute sinusitis and ultimately with osteomyelitis in my sphenoid sinus. The culprits were organism/fungus seen in severely immunocompromised people. From that info, I sought an Infectious Disease specialist to see if perhaps I needed one. This was all prior to my POTS/dysautonomia although I have always had orthostatic hypotension. The ID ran multiple tests on my immune globulins and other components of the immune system and vaccine challenge tests. Turns out I have Common Variable Immune Deficiency. The ID recommended gamma globulin transfusions, but I did seek a second opinion from a non-associate Immunologist from another city who totally concurred with the diagnosis and treatment. One thing beyond the antibiotics and drinking lots of non-caffeinated beverages I do are the nasal rinses. At one point, my ENT wrote a Rx for Alkolol Solution naso-rinses (has Listerine and saline and I don't think you have to have a Rx for it) which only helped me for very brief periods, but everyone is different. I also have a deviated septum.

Best wishes for better health.

ruby

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Hi Ruby,

I also have cvid/hypogamma, along with a few autoimmune diseases that attacked my small fiber nerves causing the autonomic neuropathy/dysautonomia symptoms. I've now been on ivig/privigen monthly for about 3 years. I'm not cured but my infection rate dropped and some of my autonomic symptoms and nerve pain improved.

Don't know if you've decided to start the ivig or subq or not, if you do though I can share my tips I've learned through the process with you.

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Thanks, everyone, I've had sinus problems since my M.E. started 6 years ago (my orthostatic intolerance only started just over a year ago but made life much, much worse.) Saw two specialists and a CT scan, all "normal"except a slightly deviated septum. Several naturopaths and acupuncturists. Right now my naturopath has me on oregano oil spray, which is powerful but hasn't made a real difference so far. Will look at these links for more ideas...

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Ruby, that sounds like an awful experience…I hope they've at least been able to keep the infections at bay since. Thank you for the suggestion on the sinus rinse, it's very much appreciated. Best wishes to you too :)

Singout, sorry you've been having sinus issues too. If you do stumble on anything that helps, I'd be glad to hear! Hope you do find answers, not to mention some real relief.

At this point, I'm at a bit of a loss. They did do another endoscopy when I was in a couple days ago, and they don't see any clear signs of the infection anymore. Which is great, except for the fact that I don't actually feel any better. The allergy test did come back positive for a couple things, so been trying to get that under control now. But I don't know that that explains the stubborn fever and general sick feeling. I don't know…I'm pretty unclear about what's going on at this point.

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