Trouble Breathing

[B_in_Florida]

As stated, I have been having trouble breathing. I've been wondering if anyone else has had the same problem and what they did or what was prescribed.
It started out as a chronic cough that was due to post-nasal drip, then I eventually stopped coughing as much and it turned into having trouble breathing with very "dry" coughs (don't cough anything up most of the time) and wheezing. I've had CTs done and xrays (ER) and the trouble seems to be due to congestion in the airways, the lungs seem to be normal.
I've been put on a nebulizer for some emergency treatment (didn't seem to help much), and was given an inhaler -- When I think about how inhalers magically make it easier for people to breath on Tv, it makes me scoff -- The inhaler has seemed to help a little, but it does not work right away, the relief does not last for 4 hours ( "Take every 4-6 hours as needed"), plus I constantly have to take it every 4 hours (no more than 4 times a day though) for it to have any effect - although I still struggle. It also took more than a few days before it had any effect, although that's better that no effect at all.
Tonight was bad though. I started coughing a lot and getting mucus in my throat and my throat started getting congested. It got very hard for me to breath and felt like my throat had closed up on me. I used my "rescue" inhaler (after 4 hour were up - BS term, btw.), but that didn't seem to give me a lot of relief.

I want to know what anyone else with this problem has done? Any tips? Were you told to use an inhaler? What medication were you told to use for to help your breathing, and does it work?

[drz]

Frequent sinus rinses are the best way to try reduce post nasal drip. The other is to use a med like Muccinex or generic form to thin the mucous. If you need help coughing mucous up one with an expectorant can help. Having adequate humidity helps and inhaling steam can also help with congestion and clogged sinus passages.

[Hannah]

I just saw the ENT for this today. I have a lot of post nasal drip and use Neil Med and Wilson's solution, but was having swelling in my throat that caused voice issues. I did a round of prednisone, but the problems started up again after I tapered down. I have been coughing up some chunkers, and my ENT said I have some forming on my vocal cords. He has scoped me twice and has seen them in the folds of my voice box. They are very hard to get out, though, and he said the only way to remove them without coughing them out is surgery.

My ENT put me back on a low dose of prednisone and recommended using Mucinex and a steroid nasal spray. He also suggested using a humidifer at night, getting plenty of water, and using saline spray. He mentioned the possibility of using a nebulizer with steroid treatment, but that's only if my problems persist. I am between rheumatologists right now (recent move), so I'll be on steroids until I get back on something more permanent.

Stay hydrated, use steam, keep the mucus thin as possible. I had a scary coughing fit like yours yesterday, so I know how you're feeling!

[MikeG-2012]

I just saw the ENT for this today. I have a lot of post nasal drip and use Neil Med and Wilson's solution, but was having swelling in my throat that caused voice issues.

I have throat issues once in a while too. One way I help that is to rinse the area around the throat. Here's how I do that:I found this by accident one day, and after talking to my ENT, he thought it was a good thing for me to do regularly. I was looking for a good way to keep the wilsons solution in my sinuses longer and wondered what would happen if I filled them up completely with the waterpik (on a slow setting). So I tried holding the other nostril closed when running the saline. I stopped when I felt the water hit the back of my throat, and after I let the solution sit in there for 30 seconds or so, I let it run out. So I was doing this and I was using my waterpik on a very low setting, I held the opposite nostril closed and let my nose and sinus fill up, but forgot to shut off the water flow. I learned that if I had my lungs full of air, I could breath out, and at the same time, let the saline run out the back of my sinuses, and out the back of my throat and out my mouth. Like I said, USING A VERY LOW SETTING on the waterpik. Not sure if that would help you or not, but check with your ENT.

[annekat]

Your coughing and breathing symptoms are similar to mine. I used to use Mucinex to thin the mucus but have found something better. It is NAC, or N-Acetyl-L-Cysteine. It is an amino acid found in pill or capsule form at supplement shops like Super Supplements or the Vitamin Shop. Or you can find it online, perhaps for less money. I take 600mg twice a day and it enables me to cough up sudden blobs of mucus in one cough. I especially notice this first thing in the AM, I've been sleeping peacefully, I get up, and right away I cough up a soft chunk, in one shot. NAC has been discussed on here before, do a search.

As for inhalers, if you only have the typical albuterol "rescue inhaler" which is supposed to last 4-6 hours, I don't find that alone to be a good way to go. Yes, you should have it on hand for rescue situations, and I often use it early in the morning to loosen things up. But for me, I have found it to have a rebound effect and make things worse if used as often as it says on the label or prescription. I prefer to also use a steroid inhaler, which is used in the morning and at night and at no other time during the day. It takes a few days to start working but if used consistently, helps control the inflammation in there and greatly reduces the need for the rescue inhaler. That's how it works for me, anyway. Unfortunately, my doc doesn't believe it will help me much because it is for asthma, not WG. He has prescribed it a few times but I have to struggle with him over it. My GP has now told me he will prescribe it. I've heard of another Weggie whose WG doc said the same thing about all inhalers, and she gave me her rescue inhalers because she was convinced it wouldn't help her. She has since passed away.

Another thing to pursue is having a bronchoscopy done, if you haven't, to see if there is any narrowing, or stenosis, in your airways. This happens in some Weggies and needs attention, as it can be life threatening if not addressed.

Just a few ideas, in addition to the good ones already mentioned. Inhaling steam from a bowl, with salt or herbs added, and taking hot showers, are other things that help. Best of luck in getting relief. I know how it feels and even with the things I do, there are still problems, such as after physical activity or with cold, damp, or dry air. Let us know if things improve, or if they don't.

[vdub]

Something you might ask you doctor about since he has recommended an inhaler at night is a CPAP. The CPAP helps you breath, but better yet, it has a humidifier built into it and you can control the amount of humidity you are getting without changing the humidity in the whole room or house.

I had big time breathing problems, but I doubt any of that portion of my story would help you. In fact, I don't even know if my breathing problems were wegs related.

[annekat]

I might add that if you try NAC, it may take up to 2 weeks to start working. I would hope, sooner. A combo of methods is probably in order. I only had trouble at night in my early stages of WG. Now I get coughing and windpipe obstruction more during the day while up and about doing things, and from physical exercise or stress. Coughing something up, and settling down, will usually help a lot. Humidity, IS important, though cold damp outside can make me worse, as can cold dry. If you use a woodstove for heat, as I do, it's a good idea to have steaming water on the top of it to counteract the drying effect. Every person, house, and climate is a little different in these respects.

[vdub]

If you use a woodstove for heat, as I do

Wow, wood stove! That's a tough game generally relegated to young healthy people. I just put a wood stove in our cabin and have been dreading getting the chainsaw out and then having to split the wood. Fortunately, I have lots and lots of wood close by and I won't need too much, at least, I won't need too much for this winter. First smoke from the newly installed stove is below. The cabin is at 4,700' and would you believe we don't have any snow on the ground yet?

16Sep_Cabin First Smoke_01.jpg

15Jul_kville_cabin-delivery_21.jpg

[annekat]

Wow, wood stove! That's a tough game generally relegated to young healthy people. I just put a wood stove in our cabin and have been dreading getting the chainsaw out and then having to split the wood. Fortunately, I have lots and lots of wood close by and I won't need too much, at least, I won't need too much for this winter. First smoke from the newly installed stove is below. The cabin is at 4,700' and would you believe we don't have any snow on the ground yet?

16Sep_Cabin First Smoke_01.jpg

15Jul_kville_cabin-delivery_21.jpg

Yep, your cabin looks alot like my house , and the wood scene is a lot harder for me now than when I was younger and healthier. The good part is I'm just a little above sea level and can use electric as back up, as long as there's power, or things like Mr. Heater propane heaters. My house wasn't built as a permanent residence so has no central heating installed. So it's a balancing act between paying for electric space heaters or using up wood. So far, it's quite mild here, not even any frost. And yes, I'm typing this on a smartphone, as it's just what I picked up. May make my posts shorter. Maybe.

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