Sinus irrigation bottle - do you know about it?

[Carol]

I wonder if Wegener people know about the sinus irrigation system for their sinuses. I know it sounds yukky BUT it may help you. There is is special bottle which is very squeezable plastic with a tube that goes to the bottom of the bottle to bring the liquid up to the top. So you put a sachet of a salt powder(works out about 30 cents each) in the bottle with body temperature water and leaning over a sink squeeze the liquid up through your sinus. It feels strange at first(I'm a person who hates having their head under water when I'm swimming) but you do get used to it. I sniff it back up to increase the exposure to the nasal cavities. The most difficult part is getting the water temperature right as you need to use boiled water. So I have experimented and I boil the kettle and fill to a certain mark on the bottle and I keep boiled water in a glass bottle in the fridge and then top this up to a certain line on the squeeze bottle. It's always the right temp then. Fess and Neilmed are the 2 brands I know of. I've just ordered more satchets over the internet. The initial kit costs about $17 which includes about 40 sachets. The Eye and Ear Hospital doctor recommended this to me.

[Jack]

I used this method for a long time with great results. It is an ancient yoga practice called Neti and is more usually performed using a Neti Pot. However, I used to use a 50 cc syringe with my own mixture of table salt and sodium bicarbonate. Takes a little getting used to, but clears everything without blowing hard and causing more inflamation.

[andrew]

Hi Carol...
Although I have sinus involvement, I've never tried it. You've made me think more about it though and I might give it a try. Thanks for the tip!

[Rodger]

Forgive me if duplicate posts show up. I was interrupted will writing an earlier one.

I use the NeilMed version 3 times a day in each nostril. Although I use my own cocktail rather than the packets (although I use those for travel). My cocktail is 1/4 tsp backing soda, 1/4 tsp pickling salt (no preservative or iodine--similar to kosher), and 8oz of warm water. My ENT has okayed tap water in my area, and most areas that are not from well water. So far no infections.

I've also used the hotel room microwave for about 15 seconds when I was a little uncertain about where I was.

The Neti pot just did not get the gunk out--not enough pressure after the sinus remodeling the WG did. My ENT uses me as an example for her medical students and always says "See, it looks as if we did sinus surgery in there."

One ENT says there is no need to rinse as often, but it doesn't do any harm and does help.

Try it!

[RCOSSIO]

...after the rinse it is recommended to use a saline gel to keep the nostril and sinuses moist!!!

[Rodger]

Yes, to the moisturizer! I forgot to mention that my ENT recommended Ponaris which is more of an oil than a gel that was developed to protect the first astronauts' sinuses from drying out in space. It's applied with a dropper. It runs me about $13 for about 4 weeks supply. No prescription needed but the pharmacists usually needs to order it or know that you will be a regular buyer.

[Sangye]

I don't have sinus involvement, but used to get sinus headaches a lot about 20 years ago. Very hard to function. I have two suggestions that might be worth trying. I have no idea if they'll help, but they're easy to try.

1) For dried out nasal passages/nostrils/sinuses : Get some ghee (clarified butter-- buy it in health food stores or make it yourself Food-India.com - Ghee (Indian Clarified Butter)). Put a very small amount on your pinky and smear it around inside your nose. You can also put one or two drops of melted warm ghee inside your nose, like any other nose drops. Close off the other nostril and sniff it to get it up in there. As you breathe, the ghee gets carried deeper inside and is very moisturizing, healing and soothing.

2) Certain foods imbalance the earth/water elements, causing sinus problems. Not that such an imbalance would cause Wegs, but it could worsen your symptoms. That was the cause of my sinus headaches in the past. Classic food culprits are citrus, wheat, peanuts, dairy and bananas. Eating them on a regular basis should be avoided by anyone with sinus problems, or an excess of phlegm. They're fine to have occasionally. (The peanuts and dairy are a double whammy for Wegs, since they're also inflammatory!) Anyway, try avoiding one at a time, and see if your symptoms improve at all. There are other foods on the list, of course. If you're looking at an Ayurvedic website, look at the foods that increase/ aggravate Kapha. Those are the ones to limit.

Hope this helps, at least a little.

[Terry]

I tried nasal irrigation a couple of times, and had the same result both times. The saline got stuck up in my sinuses and couldn't get out. I felt like I'd been swimming in the ocean in storm surf! In other words, my head was full of salt water, and all I could do was wait for it to clear out. The ENT doesn't want me doing irrigation anymore, just a gentle saline spray to keep everything moist. With my constantly runny nose, there's not much chance of it drying out.

[capabayan]

I just started using the NeilMed sinus rinse - it has worked great for me, and I can breathe much more clearly after rinsing! On a side note, I did have to take an antibiotic for about a week before "re"starting it, as the first attempts left me with insane sinus drainage that hindered my breathing.
I don't use it every day, but keep it on hand for when things are congested up there.
Where do you find the gel? That sounds like something I could use.

[Rodger]

I just started using the NeilMed sinus rinse - it has worked great for me, and I can breathe much more clearly after rinsing! On a side note, I did have to take an antibiotic for about a week before "re"starting it, as the first attempts left me with insane sinus drainage that hindered my breathing.
I don't use it every day, but keep it on hand for when things are congested up there.
Where do you find the gel? That sounds like something I could use.

The Ponaris, which I mention is a drop not a gel. I get from Walgreen's but also had luck with my grocey store pharmacy. They usually do not stock it, but can order. Tip: have them order enough so you can keep a spare on hand. The bottle labeling makes it hard to tell when you are runnign low.

I had one ENT pamphlet that promoted using a nasal spray like Flonase or Nasalcrom first, but this was general information not for WG patients.

I've never had the "full feeling" but I've had so much sinus damage, I think it is virtually impossible for them to "fill up".