Sinus Issues - Running Me Down! :(

[Bella127]

This is the copy and paste of the reply to firewatcher in the "Echinacea" post, but I wanted to make another topic for it since I wanted it to focus on the sinus issues also! If anyone has any insight, please let me know:

I was recently diagnosed with vasomotor rhinitis by my ENT. I'm definitely sensitive to smells, smoke, irritants etc., and it seems I always have a sinus infection. Or the symptoms of one - although I DO have greenish/yellow (infected) mucus almost every time (sorry for being so descriptive...love these symptoms) making me believe it IS an infection? Anyone have thoughts on that?

Plus, every time I go to my primary, she tells me it's an infection, and hands out the antibiotics. I know they're not good for me to be on all the time, and it's hard for me to believe I'm actually getting real sinus infections without there something being wrong with my immune system (the allergist did the blood test to be sure, although the blood test from a year and a half ago showed my immune system was fine). Every 4-6 weeks I keep getting these "infections", and am back at the primary or my ENT. So basically by the time I get over one, another one is started! I looked into fungal sinusitis as a cause, because of the overuse of antibiotics (antibiotics create an environment for the fungus to grow, creating another infection, which you think you need antibiotics for, etc... creates a vicious cycle), but the doc said he would have found that out when he did sinus surgery on me last year.

When I went to my ENT during what I thought was a sinus infection this last time, he did say he thought it was something upper respiratory, because I was coughing really bad (they did an x-ray to check for pneumonia), lots of mucus, congestion, etc. He had diagnosed me with vasomotor rhinitis a couple months ago, but aside from that I think I get a mix of the vasomotor symptoms AND infections.

What does anyone take for vasomotor rhinitis? My ENT prescribed Astelin, and I do a saline nasal rinse every day. I can breathe a little better with both, but am still having all of the symptoms; I feel congested, my eyes burn, I feel weak as if I'm about the get the flu, etc. I've been like this ever since getting POTS.

And I did try to tell this allergist that I went to recently that if I don't have an episode within the 24 hours, then I most likely won't test positive for anything to do with MCAD...but of course he said he has "never heard of MCAD", and that I need to "stop going on the internet and reading what all the crazies post about their mast cell disorders and trying to fit my symptoms into what they're saying (those on the mast cell forums)" mad.gif

What a jerk! So I'm sure I didn't have an "episode" during this urine test, which is why I am not looking forward to going back to him for the results -- I don't want to hear "I told you so" and have to sit there while he makes me feel like an idiot for coming in (which is basically what he was trying to get at last time - "You have none of these symptoms. So what, you get dizzy once in a while?" Grrrr!).

Thanks for bringing up the vasomotor rhinitis - I'm thinking it must be a bigger picture in all of this "sinus infection" nonsense than I thought. So you get sinus infections intermittently with the vasomotor? If you get sinus infections often, what does your doc say about it (or is it attributed to the allergic rhinitis)? And as far as Vitamin D deficiency, is that something that's taken care of with a vitamin? I do take a multivitamin every day.

We threw that Echinacea AWAY - no more of that! How horrible. I had vertigo (felt like I got a new prescription for my glasses - depth perception was off, etc.), bad headache, sweating, made the heat yesterday even worse. Overall my symptoms just got really bad. I didn't even THINK to check how it would react with POTS and my other medications! (I'll blame it on my brain fog wink.gif ) A friend of mine takes it before she feels that she's getting sick, and she NEVER gets sick. I've been so frustrated with these sinus issues that I'm desperate to fix it any way I can.

I'm kind of at the end of my rope with this sinus stuff...it's really getting in the way of me being able to do much of anything. I'm finishing my last year of my BA online now, but it just makes me feel so uncertain about the future - how will I be able to work full time (or at ALL) if I can't manage these symptoms? I also want to work with children, which is another concern, because if I'm always getting sick with something, I'm also always CATCHING whatever anyone else has (and we all know kids are little petri dishes swimming with viruses, etc.). I worked at a preschool briefly last year (4 weeks) and had to quit because I got sick twice from the kids who had colds, was out for a couple weeks, came back and it happened again. I just couldn't do it. Meanwhile everyone else at my work didn't get anything- which makes me think it's my immune stuff, but my immune system is supposedly ok (as of last year, but should know the updated results in a couple weeks).

I always feel as though I'm getting the flu, my body gets weak, I'm congested, tired, my eyes burn, etc. I just don't remember feeling "normal"...I'm always run down, etc. It's so tiring, and I feel my POTS would be (ALMOST) manageable if I didn't have this sinus stuff knocking me down/exacerbating my symptoms! Any advice???

[firewatcher]

OH man, does this sound familiar!

YES, you can actually get a sinus infection from vasomotor rhinitis, anything that swells and blocks the nasal turbinates or the openings to the sinuses can create a closed, warm, moist environment for bacteria to breed and make you miserable. I had sinus infections EVERY month for many years until I found a neti pot. I irrigated my nose with a liter of saline four times a day for a year. I still have sinus infections, but they are asymptomatic ( I don't feel the pressure or have the greeny goo and I can breathe through my nose again.) My Primary Doc is working with my allergist on this, and questioned a fungal infection instead of a bacterial, since a month of high dose antibiotics did nothing for me. I have a friend who has a recurrent fungal infection in his sinuses that he is actually allergic to! (He is allergic to the fungus living in his sinuses, talk about miserable!) I have managed my symptoms through aggressive nasal irrigation (as much sea salt in the water as I can tolerate, it shrinks the nasal membranes, I know, I'm pickling my nose ) and a steroid nasal spray (rhinocort) during allergy season. An important component to the nasal irrigation is the drying of the nose after the irrigation, you can not just leave all that saline up there, bend over and blow your nose gently, turn your head and do it again, and again, and again!

I feel for you, and I know the pain you feel! My allergist told me this week that sinus surgery won't stop vasomotor rhinitis, just ANS control and trigger avoidance. If you think that you have a mast cell disorder, you could ask your doc to try a mast cell stabilizer like singulair and see if it provides relief.

Good luck!

Jennifer

[firewatcher]

Hi Chrissy,

I was just thinking, have you seen this article?

http://hyper.ahajournals.org/cgi/content/abstract/45/3/385

It is about POTS with a mast cell involvement, maybe something?

Jennifer

[juliegee]

Oh Chrissy,

I feel for you. I'm also dealing with MCAD/POTS and have vasomotor rhinitis and years of sinus infections. The short answer is BOTH. My non-allergic rhinitis caused chronic sinus infections for years and years. Like you, I spent years on antibiotics. I was often so sick from sinus infections that I would lose weight and get so sick. I finally learned that I had a deviated septum. When I was in high school, I was on the swim team and did a flip turn into the wall- ouch! I ended up breaking my nose. After years, a calcium deposit formed and prevented me from breathing on one side. All of those anatomical changes, affected my ability to breathe, drain mucus, etc. and I was even more prone to sinus infections. I had a rhinoplasty/septoplasty when I was 40 y/o and I haven't had a sinus infection since. Ask an ENT to check out your nose to ensure you don't have a deviated septum, etc. that could be exacerbating things.

Otherwise, the things you should be on for MCAD will stem your rhinitis. I take zyrtec, benadryl, and singulair. All help my chronically runny nose.

All the best-

Julie

[Csmith3]

I've posted here before about vasomotor rhinitis and the chronic sinusitis that has driven me mad for about 15 years! It took ages before I realised what it was. I don't think people realise how miserable it is to have chronic sinusitis. I don't know whether they are bacterial infections - I've read conflicting information and I was never offered antibiotics. But, I am glad to say it is much better now. Unbelievably better, so there is hope!

I've tried various things and I'm not sure which brought about the most improvement. The thing is, once you find something that helps and breaks the cycle of chronic infection, it makes such a difference. But it's finding those things that work for you. The things that help me are:

* Ipratropium bromide nasal spray (this is for vasomotor rhinitis, rather than the steroid sprays which are not as effective)* Avoiding triggers, in particular transport fumes (eg, I avoid trains with windows that open, I don't use air conditioning in cars).

* Nasal irrigation helped a bit

* I had a load of dental work redone and at the same time I had some TMJ issues sorted out with a bite plate. One or both of these made a drastic improvement and basically stopped the never ending infections. The sinus cavities can be linked with upper jaw and perhaps some tooth decay was fueling the sinusitis. Or I know that my problems are partly structural (but cannot be corrected with surgery), so maybe the jaw realignments helped. I don't know but things really improved after all the dental visits and it cannot be coincidence.

* When I get really fed up with it, I take Sudafed. I know I shouldn't (makes me tachy) but at least a couple of 12 hour slow release Sudafed will bring some temporary relief.

* I try hard not to pick up colds and if I do get a cold, I take something like Sudafed from the beginning to try to stop my sinuses getting any worse.

Good luck!

[lalalisa]

Hello,

I too experience chronic sinus infections. In the past 2 years I've found a few things that have helped.

First was getting a CT scan of my sinuses that showed I had multiple polyps. (These can definitely contribute to infections not allowing things to get better) These were surgically removed along with the dr. opening up my sinuses allowing for more room for infections to drain.

Second was beginning allergy treatment. Shots or sublingual drops which aren't FDA approved yet but have been used in Europe for 20 years and my dr in the states uses these) I didn't realize that I had severe allergies. When I was tested the dr's and nurses were all coming to take a look at my reactions.

Third is frequent nasal irrigations with salt water (it sounds like you are already doing this).

I'm not sure how I can help but thought I'd at least tell you about what has brought me to a hopeful turning point with my infections.

Take care, I know this is frustrating!

Lisa

[Radha]

i also have terrible sinus congestion everyday and it also makes me keep coughing, the mucus is so thick and so hard to get out! putting any saline just makes it worse becuase it doesnt come back out! just clogs me up even more! nasonex helps some but its so hard to make it go up all the way since there is so much congestion blocking the nasal passages. this really affects my whole life and i wish the usual allergy meds would help, but as you know its not allergies! wish you all well and please keep me updated on any ideas, i could use all the help i can get!

Radha

[firewatcher]

i also have terrible sinus congestion everyday and it also makes me keep coughing, the mucus is so thick and so hard to get out! putting any saline just makes it worse becuase it doesnt come back out! just clogs me up even more! nasonex helps some but its so hard to make it go up all the way since there is so much congestion blocking the nasal passages. this really affects my whole life and i wish the usual allergy meds would help, but as you know its not allergies! wish you all well and please keep me updated on any ideas, i could use all the help i can get!

Radha

Radha,

I would first try the old sinus infection coctail: guifenisen (mucinex) and sudafed (or whatever decongestant you can tolerate.) Once you can move a little bit of mucus, then saline. When I'm talking about saline, it is not a spray, but a liter of the warmest, saltiest water you can stand in a neti pot. It took a long while the first time I did it, and I got some of the worst looking, chunky stuff (sorry ) out of my nose for a month! The problem is that you have to get it clear first to keep it clear. This is the ONLY thing that worked for me and continues to work without drugs or side effects. Good luck!

Jennifer

[Bella127]

Thanks so much for all of the responses. I can see a lot of you are dealing with the same thing as I am, and I definitely feel for you!

I did have sinus surgery in February of '07...I had a deviated septum, and some nasal polyps removed. This did help as far as my infections not lasting as long and the symptoms not being as severe. I still get the 'sinus infections' just as often though, but I can breathe better.

I have to say that irrigating my sinuses with the salt water definitely helps... I have something similar to the Neti Pot (made by the same company) except mine is a bottle that you squeeze upward into the nose to get more flow into it (nice because you can regulate with how much force the water goes into your nose - it's gentle but effective). It seems to help a lot with my general breathing (always a good thing ) through my nose, but I'll always notice the congestion just "coming back" within an hour or less. I do the saline stuff two times a day.

Dr. Grubb had put me on Singulair for one reason or another a couple years back, although now I can't remember why. I'm going to take a look at my medical notes and see-- if I was having less sinus infections while I was on it, that may be something worth looking back into! I also wanted to try and take Benadryl once a day and see if it helps (mostly because of MCAD).

I will let everyone know how the appointment with the allergist goes - I'm definitely bringing up the possibility of MCAD. Something has always told me deep down that "something else" is going on besides my POTS - maybe this is it.

Who knows. In the meantime, I hope everyone is feeling well and that you guys are finding relief for these sinus issues!

Jennifer - interesting, because I never thought that vasomotor rhinitis ITSELF could be CAUSING the sinus infections!! I'm guessing this is because if the vasomotor rhinitis symptoms aren't treated, they cause more congestion, etc.?

Julie - My ENT has this neat little camera that he puts up my nose when I visit. He always asks if I want to see the screen and watch, which of course the answer is "you bet!" - I'm way too intrigued by the inside of my nose - but last time I had an "infection" (what my primary doc said was an infection, and which she gave me antibiotics for), he looked in there with the camera and said my nose was CLEAR! and I mean, you could tell I was sick... my eyes have that glassy look to them, I was weak/tired, coughing, etc. ahhh... but he did say the turbinates were a bit swollen. whereas I felt that my nose was not clear at all (although it FEELS stuffed up, it actually isn't) - is the feeling of being congested, without actually BEING congested/full of stuff in the nose part of vasomotor rhinitis?

Cath_UK - Interesting that after your TMJ/dental issues cleared up, that your sinuses got better! Wow! I wonder what the link is exactly? Did your doc ever say why? I got TMJ last year, around September or so, and had a mouth guard/bite piece that I used also. It helped tremendously, along with advil for the jaw pain, and if it got REALLY bad, some valium (don't worry- not both). It has improved SO much since. the TMJ was so bad that I used to cry myself to sleep some nights from the pain- now if I feel it "flare up" I just wear the mouth piece. I try to wear it most nights but it's hard to have this cumbersome mouth piece taking up your whole mouth & then not being able to breathe through your nose!

Lisa - thanks for the reply! Do you think the singulair helps you with your sinus issues (if that is the reason for being on singulair)? do you have vasomotor rhinitis, or chronic sinusitis?

Radha - do you have allergies, or has the possibility of vasomotor rhinitis been looked into for you? V.R. stems from ANS issues, and can cause symptoms of allergies without actual allergies.

Chrissy

[iheartcats]

I had so many sinus issues until I switched to Allegra 180 in the AM (Claritin wasn't cutting it anymore) and adding Nasacort Nasal Spray. I tried Flonase and Nasonex and didn't like them - too many side effects.

I usually only use one 'squirt' of Nasacort in each nostril unless things are really acting up, then I use 2 in each.

I don't love depending on a Nasal spray, but it has so far stopped my infections.

Let us know what your doctor says!

[Radha]

i know i dont have allergies, because the symptoms are the same everyday no matter what the weather is, and i do know eating makes the congestion worse and it has nothing to do with food allergies because i dont have any allergies and dont eat any dairy, wheat or fat or sugar, its terrible, but nasonex helps some, not alot, but some,

Radha