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Sjogrens Topics => Living With Sjogren's => Topic started by: Carebear on February 05, 2014, 11:36:45 AM

Title: Sinus Rinse
Post by: Carebear on February 05, 2014, 11:36:45 AM
Hello dear friends,

My ENT tells me I have had a sinus infection for many months, as indicated on a couple of CT scans completed in the last year.  So he suggested I use a sinus rinse, which I began last night.

It is a squirt bottle type, so it works on pressure not gravity.  I had no problem using it, but right afterward I started experiencing unpleasantness.  It began with what I will describe as a sinus headache, lasting about ten minutes. Then I got an earache, which again lasted for about ten minutes.  Is it possible that I just used too much pressure on the bottle?  I think so.

The thing is that this afternoon, I have the earache again.  And I am having trouble swallowing.  I felt like I was going to "drown" in the shower this morning.  That doesn't sound right, does it?

I have a minor problem with swallowing already.  Apparently food can go under the epiglottis instead of straight down the throat.  And I am being investigated for neuromuscular disorders including Myasthenia Gravis.

Do you think the two things are related?  Or just another crazy coincidence?

I know I need to contact the doctor.  But maybe I will just try this rinse a few more times to see if it improves.

I've just been through the ringer in the last few weeks.  I'm too sick to think for myself right now.  Thanks.   ;)

Title: Re: Sinus Rinse
Post by: slccom on February 05, 2014, 11:59:32 AM
Hugs! I wonder if you are just getting a bunch of backed-up gunk out, and that is why you are doing what you do. The ear thing is making me think it is getting into the Eustachian tube, so you may need antibiotics for a while.

Hang in there. Your doctor may be able do a sinus rinse in the office that should clear the long-standing gunk out.

Sharon
Title: Re: Sinus Rinse
Post by: cccourt1942 on February 05, 2014, 12:02:46 PM
I can only speak to the difficulty in swallowing and the ear"ache".  If you can't swallow what is being flushed out of your sinus cavities, it will find its way UP your Eustachian tube.  Unbeknownst to you it is likely in your breathing and attempts to clear your throat AND swallow have assisted that stuff to defy gravity, if you will.   That "gook" ends up in your middle ear.  There is purous otitis media (fluid behind your ear drum ...not infectious) and serous otitis media (ear infection).  It is difficult to imagine infected stuff from your sinuses is already manifesting an ear infection.  Since you use the word "ache" I presume it hurts!!  Sometimes one has purous OM and just the sloshing can bother you.  But does it really hurt?  Otherwise, the ear infection (serous OM) was likely there already.  Just my opinion.  Not a doctor..but a speech pathologist.    If you are in pain, I would run to a "Doc in the Box" because an ear infection is easy to dx and an Rx can be written by a PA or a nurse practitioner. 
Title: Re: Sinus Rinse
Post by: tiffferoni on February 05, 2014, 12:09:23 PM
Have you thought about using the neti pot?  I like it.  Doesn't hurt or go down my throat like the sprays.
Title: Re: Sinus Rinse
Post by: Carolina on February 05, 2014, 12:11:12 PM
Hi, I use Simply Saline and Nasonex.

I also take Mucinex to thin my mucus.

Well, I take the generic Mucinex.

I hope you get some relief.

Hugs,  elaine
Title: Re: Sinus Rinse
Post by: susanep on February 05, 2014, 12:20:27 PM
What kind of rinse did he have you use? I use a saline spray every day, and the nose spray like nasonex.

susanep :)
Title: Re: Sinus Rinse
Post by: Sleepy In Seattle on February 05, 2014, 12:28:08 PM
My husband once got an ear infection after using a nasal rinse like that...definitely don't let it go on too long without seeing a doctor!

Personally, I L-O-V-E the Neti pot....takes a little practice to get used to using it, but it works wonderfully for me...I have been able to get rid of sinus infections without using antibiotics by rinsing my sinuses with plain salt water 2-3 times a day for maybe a week. It also helps prevent them (as well as curing stuffiness) when I have a head cold.

I have gotten so used to it that I can change the angle of my head as I pour the water through so it rinses all different parts of my sinuses gently and safely.

At first, I got salt water down my throat, in my ear, etc...but with practice I got better and better at it.

I do have to be careful to only blow my nose VERY GENTLY after rinsing to avoid forcing stuff up into my ear, as a previous poster mentioned.

Nasal rinses are wonderful, but they take some skill - don't worry if you encounter some difficulties at first. And do get that ear seen to if you develop pain or a fever.....
Title: Re: Sinus Rinse
Post by: litliwlowa on February 05, 2014, 02:02:34 PM
Carebear

Timely your thread. Just did my first sinus irrigation ( I did the gravity one - Neti pot).

Sounds like some of that fluid got backed up in your eustachian tube. I have that trouble with my ears. However, concerning is the ear pain. Speaking for myself, when I get fluid backup in the tubes, I don't have pain but a whole lot of stuffy feeling. When I start having ear pain, invariably it turns out to be serous otitis media

QuoteIs it possible that I just used too much pressure on the bottle?  I think so.
Yep, it's possible.

I actually opted for the gravity sinus wash in lieu of the pressure one as I know I have a problem with fluid buildup in eustashian tubes. It wasn't as eeksie as I imagined it would be and none of the stuff got in my ears. Phew!!

No idea on the swallowing difficulty.

...but in my humble opinion you need to see doctor on that ear pain.
Title: Re: Sinus Rinse
Post by: anita on February 05, 2014, 02:33:08 PM
I personally like the sinus rinse over the neti pot.

A couple tips.  After you do the rinse, it helps to move your head in all direction to help drain all the rinse out...forward, side to side, etc...several times.  This should be done with neti pot also.  It will help keep those sinus headaches away (if they are from the pressure of trapped rinse).

Also, make sure to use distilled water, not tap water...never use tap water!  There is bacteria in all water that can cause major infection if used in sinus rinse or neti pots.  If you google tap water bad with sinus rinse, you'll see all the warnings from reputable sources.

It does take a little time to clear out all the crap from your sinus, so if you just started this (and had an infection for months), then it may feel worse initially, then improve over time.  Once you get it under control, then using the rinse or neti pot more regularly or right when the first hint of sinus pressure/infection begins, it will be much easier to control and stay on top of it.

You may need a decongestant to help break up the congestion, then the rinse will help clear it out.
Title: Re: Sinus Rinse
Post by: LucyD on February 05, 2014, 02:48:03 PM
Hi CareBear,

I have been using the NeilMed sinus rinse bottle for about 8 years now. I use it twice a day, once in morning and once in evening. I put 1/2 teaspoon of salt in 8 ounces of water.
It has been a huge help in keeping me free of sinus infections.
I am careful not to squeeze the bottle too quickly or too hard. Just gentle, steady pressure.
I have had 5 sinus surgeries in all.

I do think it might be that you squeezed a little too forcefully.
Also if you have a lot of backed up mucous from the dryness and previous infection, that might be starting to move and block some.

Another trick one of my ENT docs told me was that it was very important after you have done the rinse and drained as much out of your nose as possible, to lean your head over the sink at about a 45 degree angle to the side and tilt the top of your head down a little. (So, if you are draining the right nostril, you would turn your face slightly to the left as if you were sort of looking at your left shoulder, and also keep the top of your head tilted down - and you will get residual drainage out of your right nostril.) Then do the reverse to drain the left nostril.

If I squeeze too hard, I will notice pressure in my ears.

Also, a trick that helps me, but that might be just because of the uniqueness of my anatomy now from the surgeries - is to bend my head down and put it between my knees for about 30 seconds, then lift it back up and look at the ceiling. (This I discovered by accident when wrapping a towel turban around my just-washed hair. When I "came up" I would drain a bunch of more salt water out of my nose.) Then when I lean forward, a lot more salt water comes out (along with any other lovely things in there.)

Will be keeping you in thoughts and prayers. I know sinus and ear infections and complications are NOT fun and can really take a toll on our energy and well being.

I hope this helps at least a little bit.

LucyD
Title: Re: Sinus Rinse
Post by: LucyD on February 05, 2014, 02:52:30 PM
Forgot to tell you this little thing that happened to me in the hopes that it will help you laugh a little.

About 5 years ago after one of my surgeries, was helping set up a computer for a guy at work shortly after doing my sinus rinse that morning. I evidently hadn't gotten all of the salt water out of my nose.

I leaned over to connect his keyboard and about 4 ounces of salt water just poured out of my nose onto the keyboard. I was mortified. He looked disgusted.

How do you expect someone to use a keyboard that you have just drained your nose on???!!
Even though it was mostly just salt WATER.

I went and got him a new keyboard. The worst part was trying to explain that I did not blow my nose on his keyboard.

:-)
Title: Re: Sinus Rinse
Post by: Carebear on February 05, 2014, 02:58:09 PM
Thanks all.  I appreciate your kind remarks so much.

I am using the NeilMed sinsus rinse.  You add a preweighed package of salt to preboiled water (cooled down of course).  The ENT has me adding a teaspoon of unpasteurized honey to the mixture too.

The ear is definitely painful, no fever though.  I had just finished a five day round of antibiotics for the sinus infection so I almost think I can rule out infection...almost.  The pain seems to be from pressure.

I think the swallowing difficultly has something to do with the slow draining of mucus (sorry) along the back of my throat.  Because I have trouble swallowing already, this just makes it even harder.  I feel like I am going to choke.

Do you think it unusual that nothing came out with the rinse?   Nothing other than the rinse of course.

I don't know.  Everything this ENT has me do turns out badly.  He gave me a steroid to add to the rinse too, but I think I will stay clear of that for now.

I think I was too forceful.  I can change that.  I will pick up distilled water too just to be on the save side.  And I may need a decongestant if I see no "results" from the rinse.

How could I have a sinus infection all that time without any symptoms?  Maybe we are all just too tough for our own good.   ;)
Title: Re: Sinus Rinse
Post by: Carolina on February 05, 2014, 03:18:07 PM
Well, Carebear,

The rinse just goes down my throat, trickle trickle.  Then the Nasonex, which is less pleasant.

But nothing ever 'comes out' with these rinses.  I don't think that's the purpose exactly.

If I forget these treatments, all night long I am choking as I try to clear the 'stuff' at the top of my throat.  Glue?  I don't know.  But it's a misery.

And I have trouble swallowing so I can pull it down.  If that's too gross, I'm sorry.  But I quickly learn to rinse and spray and carry on.

And the worst isn't the glue, the worst is if my sinuses and nose become plugged and then I breathe through my mouth all night.  That is the scariest thing in the world.  I wake up with a terrifying mouth and tongue.  They are like sandpaper in my face.

Not like my mouth and tongue at all.  Does anyone know what I mean.  I mean it is awful.  And of course I don't sleep well to begin with, then if there's glue and sandpaper...well, no wonder I"m exhausted the next day.

Anyway, I SWEAR by Pilocarpine, nasal rinse (simply saline) and Nasonex (the generic is mometasone furoate), and Guaifenesin or however it's spelt.  Then Nature's Tears for my eyes during the night, and Ultra Systane before bed and in the morning.  And massaging my eyelids.

Oh, and Pedifix to keep my feet from getting huge calluses, and on and on.  And socks to bed for my frozen feet.  and Nivea body cream for everything else that's dry.  And a two page list of RX and OTC meds.  AND IVIG once a month. 

sigh. 

It takes both me and my husband and our little bitty quart bags to get all my 'stuff' through security at the airport.

And I dare not check my stuff through for if it's lost I'm doomed.

And so it goes.

Hugs,  Elaine


Title: Re: Sinus Rinse
Post by: Carebear on February 05, 2014, 03:25:59 PM
Elaine,

I am exhausted just reading about your routine!    ;)
Title: Re: Sinus Rinse
Post by: litliwlowa on February 05, 2014, 03:40:48 PM
QuoteAlso, make sure to use distilled water, not tap water...never use tap water!  There is bacteria in all water that can cause major infection if used in sinus rinse or neti pots.  If you google tap water bad with sinus rinse, you'll see all the warnings from reputable sources.
Yep...that's why I boil my drinking and cooking water before I filter it. A pain, but keeps me from being constantly sick.
Title: Re: Sinus Rinse
Post by: LucyD on February 05, 2014, 05:20:00 PM
Elaine, I am sorry, but I started laughing reading your post with all of the products, medicines, and routines because I recognize myself!!! Arrggh! :-) Have recently been complaining to friends about how long it takes to get ready for bed and get ready for work! Phew! Understand about getting through security at airports, too! So funny. We have to laugh, right?

litliwlowa, you have a good point about using boiled or sterile water. Maybe I will start doing that.

Carebear - that is interesting that your doctor told you to put unpasteurized honey in the rinse. I have read it is a natural antibiotic, antifungal, and antiviral. Is he a "holistic" or functional medicine doctor by chance? I have read that xylitol is also a good addition (in place of the honey) in case you want to check it out. Natural antibacterial.

Forgot to mention that my doctor also has me put a steroid in the rinse when I am swollen and blocked. It is really helpful. I think that is an excellent idea why you are blocked and swollen. I use Pulmicort -- little vials I dump in the rinse. They are expensive so I try to use only when more blocked than usual.

Am hesitant to give advice, but I hope you don't tough it out. You shouldn't have to suffer with ear pain or the swallowing trouble. They both have to be so hard to tolerate - hope you'll go see the doctor or a new one and demand help. Your point about just finishing an antibiotic and so therefore doubting an actual infection in your ears is a good one, but if you have fluid and inflammation in there it could be ripe for an infection to develop, so please keep a watch on it and don't wait too long.

Good luck. I have had so much trouble with sinus infections over the years -- I hate to see anyone else going through it.

LucyD
Title: Re: Sinus Rinse
Post by: LucyD on February 05, 2014, 05:22:45 PM
Do NOT do this - but my ENT told me about a patient of his who was a doctor, who became so frustrated with his sinus infections that he put bleach in his sinus rinses and burned the inside of his nose. And he was a physician!!! I guess they are human too and they get to the point they are willing to try anything.
:-)
Title: Re: Sinus Rinse
Post by: Carebear on February 05, 2014, 05:44:54 PM
LucyD,

My doc is an ENT surgeon actually.  And interestly, the honey recommended was Manuka.  I already had some because my Lab had an infection on his tail last summer (after I slammed his tail in the door  :(), and the veterinarian recommended it to help treat it.  Apparently it has to be unpasteurized Manuka.  I now keep a bottle in my first aid cabinet.
Title: Re: Sinus Rinse
Post by: litliwlowa on February 05, 2014, 05:57:36 PM
Quote from: Carebear on February 05, 2014, 05:44:54 PM
LucyD,

My doc is an ENT surgeon actually.  And interestly, the honey recommended was Manuka.  I already had some because my Lab had an infection on his tail last summer (after I slammed his tail in the door  :(), and the veterinarian recommended it to help treat it.  Apparently it has to be unpasteurized Manuka.  I now keep a bottle in my first aid cabinet.
Carebear

I had to do a double take on Lab + honey before I saw infection + tail then I realized you were talking about your DOG, not Lab like we get accustomed to having blood drawn at. ooops

Is that called a brain hiccup moment (on my part of course!!) ?

Where can we find Manuka? It's getting harder to find REAL RAW and unpasteurized honey these days and I find it immeasurable at the start of an infection.

Title: Re: Sinus Rinse
Post by: Carebear on February 05, 2014, 06:22:52 PM
That was my error,  litiwlowa.  I got lazy and didn't type out the full word.  :)

I purchased the honey at the Real Canadian Superstore, obviously in Canada.   ;D. But I would expect you could find it in any major grocery store in the U.S. as well.
Title: Re: Sinus Rinse
Post by: litliwlowa on February 05, 2014, 07:00:19 PM
Not in the grocery chains in my area. Thanks!! I search engined it and of all places Amazon sells it. Apparently it comes from NZ. I'll check also at whole foods - maybe they carry it. I know TJ's does not carry it.

Thanks carebear!!
Title: Re: Sinus Rinse
Post by: Carebear on February 05, 2014, 07:47:49 PM
Good old Amazon!

I did my second rinse this evening.  Sucess!  No pain.  And after much head turning, all is drained.

It smells like I have a smoky bonfire in my nose though.  Yikes!
Title: Re: Sinus Rinse
Post by: LucyD on February 06, 2014, 06:11:50 AM
Hi Carebear,
SO glad no more pain!!! Yeay! What in the world is making the smoky bonfire smell? Do you think it is the Manuka honey?
I am so interested in that. I remember reading about how wonderful it is supposed to be as an antibacterial.
Please let me know how it goes.
Thanks.
LucyD
Title: Re: Sinus Rinse
Post by: Irishlass on February 06, 2014, 01:29:16 PM
I get the smoky smell too sometimes when my nose feels particularly dry!!

I use the NeilMed products with wam filtered water.
Title: Re: Sinus Rinse
Post by: KS123 on February 20, 2014, 11:52:51 AM
Has anyone noticed that their eyes burn and get drier after using the NeilMed sinus rinse? I am using distilled water but notice after I use it my eyes are so dry all day??? is this normal??
Title: Re: Sinus Rinse
Post by: Carolina on February 20, 2014, 03:17:54 PM
Smoky bonfire, cigarette smoke, wet cardboard, those are part of my 'smell buffet'.

And I have a metallic taste in my mouth most of the time.

It's all fun!

Hugs,  Elaine
Title: Re: Sinus Rinse
Post by: LucyD on February 20, 2014, 05:31:43 PM
I have a yucky metallic-like taste in my mouth much of the time now also.
Ugh! I think I am eating a lot of bad stuff in an effort to get rid of it.
LucyD
Title: Re: Sinus Rinse
Post by: KS123 on February 20, 2014, 07:34:32 PM
but do your eyes burnfor the rest of the day ater the sinus wash??? ;)
Title: Re: Sinus Rinse
Post by: Carebear on February 20, 2014, 08:26:40 PM
Here's something for you, friends.

I have been doing the sinus rinse for a while now, and every day I get more and more congested.  By about day ten my nose was constantly running, l am sneezing - wow, my first cold in ten years.  What a coincidence.  I was so congested I decided to pass on one day of rinsing.

Next day I feel fine, so I do the rinse.  Within a half hour, same thing.  Congested, running nose.  I even have an ear ache that gets worse each hour.

What is going on?  I feel terrible.  Maybe I am having an allergic reaction.  I am adding one teaspoon of that honey to the rinse too, so maybe that's what's taking place.

If I am brave, tomorrow I will do the rinse without the honey. See what happens.

Brother.  Something so simple should not be so difficult.
Title: Re: Sinus Rinse
Post by: LucyD on February 21, 2014, 09:54:25 AM
My eyes have never burned after a sinus rinse.
Title: Re: Sinus Rinse
Post by: litliwlowa on February 21, 2014, 12:08:02 PM
Quote from: KS123 on February 20, 2014, 07:34:32 PM
but do your eyes burnfor the rest of the day ater the sinus wash??? ;)
I just started the sinus rinses a few days ago. I notice not long after doing the rinse, my eyes "leak". It doesn't last long and I don't experience burning or any eye dryness after
Title: Re: Sinus Rinse
Post by: irish on February 21, 2014, 09:44:49 PM
Hi, sorry to hear that you are having this problem. I have myasthenia gravis and have been irrigating ( sometimes as many as 10 times a day during bad infections) since the year 2000 and continue to do so.

Yes, it is possible that you placed a little too much pressure on the bottle. Also, these bottles take time to adjust to. Some people like the Neti pots as they are more easily controlled. I have used both and find that they both work well for certain issues. The bottle works the best for the really sticky, thick hard to move mucus and the pot helps to soften slowly etc. You will have to learn your body and which one to use. And yes, it is possible that your swallowing issues are involved and that some fluid could have gravitated into the E. tube. You may want to call your ENT and explain to the nurse what is going on as they may want to place you on an antibiotic, although I am guessing you may be on one already.

Be sure to bend over the sink so that the water is able to run out instead of overloading your sinuses. LIke I said, irrigating is a learning in progress tiul you find what works for you. I use the boiled distilled water per ENT orders plus the saline. I also have low t-cells and other issues so I am on nasal irrigations off and on using antibiotics.

I have done Muropiricini nasonebs which really feel wonderful on those irritated, dry sinuses. I have done irrigation with Gentamyacin and one other I can't think of now. Presently I am doing Levofloxin plus acetylcysteine added to boiled distilled water plus saline. This is ordered by ENT through a compounding pharmacy from out east. I have had the best results with this after many years of meds. I also do Budesinide nasal irrigations with saline water at times. This works really well when your nasal  passages get so swollen and inflammed that you can hardly breath. This is a steroid that is used mainly in respiratory news. Try to find ENT's who are up on the latest stuff in order to find relief. That is so important.

I hope that you can get this tamed down and feel better. I swear that I have had deep sinus issues in spite of not haing positive cat scans. I have had so many horrible infections over the years and have been on oral antibiotics as often as once a month. Finally getting relief from some of that with these irrgations. Hang in there as things will improve. Good luck. Irish
Title: Re: Sinus Rinse
Post by: Carebear on February 22, 2014, 09:09:25 AM
Thanks, irish.   You are so kind and encouraging.

I think I will try the Netti pot to see if I can get the right amount of pressure.  And you are correct that I am already on antibiotics.

If after this change the pain continues I will need to see my ENT again.  I am crossing my fingers that I don't.  ;)

Title: Re: Sinus Rinse
Post by: KS123 on February 24, 2014, 07:08:02 AM
my eyes feel so much better after quitting it.. i guess i had a reaction to the salt in it? who knows!!! I waited a day and tried again and within minutes.. so no more for me.

I am one of those tho I can't take antihistamines, I can't take any type of pain pill -my eyes dry up immediately. I am very limited as to what type of meds I can tolerate.. o well!!!  Simply Saline I can use..
Title: Re: Sinus Rinse
Post by: Katybarstool on February 24, 2014, 01:31:06 PM
KS

That seems very odd that you can use saline, but not the salt sinus rinses. I thought they were both the same?

Hope you get some relief soon.

Kathyx