Hearing Problems, Update 1

[B_in_Florida]

In case anyone is interested in the least...

Previously: Stated I had hearing problems on both ears (lost about 50% hearing), stuffed up nose with blood in mucous. Had for about 3 months. That's the quick and simple explanation.

Now: Previously called my Pulmonologist and spoke to a nurse about setting up an appointment due to the symptoms I was having. She said they likely wouldn't be able to help me because their expertise is in lung issues. I will probably still visit them in the near future though because I am doing a lot of coughing... feels like I'm coughing my lungs out... and it it feels like I may be coughing up fluid.

Visited an ENT about a week ago... geez was that expensive without health insurance.... medication wasn't all that cheap either for generic drugs. After having my ears and nose visually inspected, and after a hearing test (was that really necessary?? I already told you I couldn't hear crap!), I was diagnosed as having moderate deafness due to fluid buildup in my ears, that was keeping my ear drums expanded and not allowing them to expand and contract as they should. I was told that if I took some medication for a week my ears would return to normal.

I've taken the medication for about a week now and just finished it up. My left ear has improved a bit and I can hear people well enough on it that I don't need to constantly tell them "What did you say? Can you say that again" repeatedly after they say something at normal speaking volume. Still feel some discomfort in it. Ringing in ears hasn't gone away. The left side of my nose still gets stuffed a lot and there is still always blood in the mucous when I blow it. My right ear doesn't seem to have improved at all. Still better than permanent deafness.

I have a follow-up to see the ENT in about a week. I'm a bit dejected that I need to pay an additional $80 for something that will probably just amount to basically saying "Hi" and being prescribed the same drugs again.....

Edit, 12-05-14, 5:19 EST:
Link to first thread that disscussed the problems I started with: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4288-hearing-problems.html

[Pete]

Hey B,

You may want to try a saline nasal rinse to clear the crusties, etc. out of your nose. You can get a neti pot and saline rinse tablets at your local drugstore. Shouldn't cost you more than $15.

I'm a little surprised the ENT didn't lance your eardrums and insert drainage tubes. Perhaps the drugs will clear the fluid out. Hope you don't get to the point where you need hearing aids. Then, you're talking serious money - $3-$6k each.

Good luck.

[Dorothea]

B in Florida
I had a similar problem. I went to three different ENT'S and finally found the right one! I had to get my ears drained and tubes put in my ears. Some Wegeners patients have problems with their ears (the natural tubes in your ears close due to the inflammation, so they can't drain!) If I were you I would get this checked out, it worked for me. Good luck to you!😊

[B_in_Florida]

Well, I'm hoping it doesn't go that far. I plan to go step by step as with as non-invasive solutions as possible if I can.

Pete, I've thought about a nasal drain. Don't like the idea of shoving or spraying something into my nose though. I read you can make your own solution with salt, water, and something else. I might post the link to that later if I can find it.

[mishb]

Hi B and welcome.

A sinus rinse is basically a day to day routine for most weggies - it helps us breathe a bit better :unsure: I would suggest that you get used to the idea of spraying water solutions in your nose - it does help.

My right ear was totally deaf until I started taking prednisone and also using a steroid nasal spray and doing the rinses.
I have the hearing back, but not 100%. I have a hearing test this Friday to see what the level is at.

[B_in_Florida]

Ok, I said I might post this link, so here it is. You could actually find it yourself pretty quick. Might save you the $15 by doing it yourself, only takes some salt and baking soda, plus maybe a syringe.

Saltwater Washes (Nasal Saline Lavage or Irrigation) for Sinusitis-Topic Overview (http://www.webmd.com/allergies/tc/saltwater-washes-nasal-saline-lavage-or-irrigation-for-sinusitis-topic)

Edit: Slide 11 of the following link says not to do a nasal rinse if you have an ear infection, so I think I'm going to hold off for now. I have a doctor's appointment shortly anyway, so I'll just wait to ask him if it's OK.
http://www.webmd.com/allergies/ss/slideshow-nasal-irrigation

[B_in_Florida]

oh, yeah: I previously said that I didn't know why they needed me to take a hearing test. Of course they needed to be able to measure how effective the treatment is or how much my hearing improved, why else.

[B_in_Florida]

Ok, I was just to the doctor, so I thought I'd post an update. I wonder, should I continue this thread, or should I post a "Hearing Problems, Update 2" thread? That's what I was originally going to do. I thought it might make it easier so people didn't need to read through all the comments, but thought maybe that would actually make it harder for people to keep track of them. Leave your opinion/s.

[annekat]

Ok, I was just to the doctor, so I thought I'd post an update. I wonder, should I continue this thread, or should I post a "Hearing Problems, Update 2" thread? That's what I was originally going to do. I thought it might make it easier so people didn't need to read through all the comments, but thought maybe that would actually make it harder for people to keep track of them. Leave your opinion/s. My opinion is that it is fine to continue in this thread. You said you were going to see the ENT again in about a week, which I guess you just did, and I'd like to hear what he said. By staying here, there will be some continuity. My two cents worth.

[B_in_Florida]

Ok. so yeah, I though this would be better for continuity too, but I thought my profile would show the threads I created to make it easier to find - then you'd kinda be able to read them like a book (ie. Chapter 1,2, etc.)

So: Yesterday I was to the ENT, had a hearing test done, then was told by the technician that my hearing hadn't really changed. It had become a bit better with the medication (one side) but my ears gradually filled up with fluid again and were back to the way they were before by the time I visited the doctor.

My doc. told me that the one ear that improved didn't seem as cloudy anymore. I was told that these problems are very likely WG related and given the option to: A) Continue on Sudafed only and see how that works out, B) have an incision made in my eardrums and have the fluid suctioned out, and B) have the ears suctioned out and small drainage tubes inserted that should last 6-12 months. I was told that there was a small chance that the incisions didn't heal up completely, and if I had tubes inserted that water could run into my ears during swimming or bathing and cause an infection, so I was very reluctant about both options (don't know why small tubes that only allow fluid to drain outward don't exist for ears, they exist for other things).

So because I was really reluctant about the incision options and worried about how they would turn out, I decided to continue on the medication and have just one ear suctioned out to see how that works out. I chose to have the incision and suctioning done on the one side that was worse and was used mainly for phone conversations, and my hearing became significantly better on that side. Was a bit uncomfortable having it done, but it only took about 5-10 minutes, and he did it for free (very thankful about that! I just don't have the money for any expensive procedures, and I know he could have charged me).

I forgot to bring up my nose problems again: still stuffed, bleeds when blown (usually only 1 side), sometimes bleeds on its own - I feel like such a putz for not mentioning it to the doc. I also have pain on my nose sometimes just from the glasses resting on the bridge of my nose. I'm told (by people in general) that the ears and nose are somehow connected, so I'm worried that the nose congestion is somehow responsible for fluid not draining properly (don't know if that's a stupid theory).

Today, the ear that was suctioned out seems to have a bit of fluid buildup again. I noticed it when I lean forwards. When I lean forwards, it feels a little "stuffed up" again, like fluid ran into it. I still hear a ton better, but I predict it will be worse again by the end of next week :( big bummer.

I was told that I can put wax earplugs* in my ears when I swim/bathe if I chose to put in tubes, but I always submerge my head up to my nose/mouth when I take a bath, so having to put in those earplugs every time seems like a HUGE inconvenience to me, even if it does help my hearing a lot.



*I wasn't told they needed to be wax, but those are the ones I was given to block out water.

[annekat]

Sudafed (pseudoephedrine) has worked pretty well for me at times to make my ears less full and congested, and theoretically, able to drain better if the eustachian tubes are functioning at all. Those are the tubes that run from the ears to around where the nasal cavity and back of throat join together, and how drainage is supposed to be achieved. So, yes, they are connected, and no, it is not a stupid theory to think that nose congestion would be responsible for fluid not draining properly out of the ears. The nasal congestion and inflammation can affect the e-tubes and their being able to open properly.

[B_in_Florida]

I should have gotten the damn tubes put in when I had the chance!

Ears are pretty uncomfortable and feel "full," with occasional few seconds of a little pain here and there. Hearing is total crap again - maybe even worse than it was before. Feels like about 70% of my hearing is gone.

I've been taking Sudafed now for a couple days*, 2 pills every 4-6 hours (14 pills taken; bought the 48 pack). My left nose seems a bit better right now in terms of stuffiness, but up 'till now has been fluctuant in how clear it is... so we'll see how that goes. It seems a bit more springy on that side, before I think it seemed a bit more hard (or maybe I just didn't press down hard enough due to pain), I don't know if that is actually an improvement. When the other side is pressed on, there seems to be a gap/it dips in, not some sort of springy tissue like on the other side in the exact same position(cartilage?)..... that really has me worried. I'm worried that my nose has collapsed a bit, similar to the way calcium deficiency causes bone loss (although cartilage isn't bone). I haven't noticed this difference until I started having ear and nose problems. Aren't both sides of the nose supposed to be exactly the same?? I don't think I've mentioned this to my ENT. Wearing glasses like I normally would still hurts my nose now and then to the point where I need to remove them, and even causes headaches. Still coughing randomly a lot. Seems like I cough more at night for some reason - got this really disgusting feeling I don't know exactly how to describe. Like I'm coughing mucous. Seem to spit out a lot of mucous in the mornings - Yes, it's completely disgusting.

Was supposed to have another appointment with my ENT in the coming week, but I'm now in-between jobs with another bill I really need to pay, so it looks like I will be canceling that appointment until money is no longer just flowing outward - outlook isn't too good, since I don't know of any managers who actually like to hire people who can't hear. So I will probably have trouble landing a new job because I can barely hear, and I can't have my hearing fixed because I need a new job first.... heh. It's so ironic it almost makes me want to cry and laugh myself to death.... classic catch-22.


*I've only taken it for a couple days because I thought I needed a prescription, and discovered no prescription was sent in - but the doctor wanted me to take the plain Sudafed (no prescription needed). I had some trouble getting in contact with the doctors office (holidays and personal stuff), so I didn't find that out right away.

[annekat]

You are taking more Sudafed than I ever do.... I currently take just 2 pills a day to help with the stuffiness in my ears, mainly. At one time, I could not tolerate the stuff, but have gotten over the jittery feeling somehow. BTW, Target has a good price on the 48 pack of their house brand of pseudoephedrine (the same stuff).

If you keep taking that much Sudafed every day, or even a bit less, you may notice an improvement in your ears before long. I hope so. Before my dx, my ENT had me taking it and it may have taken one or two weeks, but the ears started to open up and I could hear better. He was having me take Mucinex pills at the same time, which helped the nose and sinuses drain by thinning the mucus. And saline sinus rinses, of course.

I can relate to your financial issues and the Catch-22 aspect. I hope things look up soon. I am self-employed, so at least I can't fire myself for not being able to hear, but not knowing how much income will flow in each month does take a toll on my stress level, which in turn, can affect my disease activity.

[B_in_Florida]

I've also got myself a neti pot, but I only used it 2, maybe 3 times. I didn't use it much because the water just flowed right into my nose, but didn't really flow through it much, didn't seem to clear it up much or at all either, and was very unpleasant the way it made me feel. Used it with this nasal solution that came with it and boiled (and cooled) water.

Are you also taking the 48 pack of Sudafed, 30 MG per pill? I'm thinking it may be affecting you differently because you may be taking higher dosage pills; that's just speculation. Target is where I bought mine, it was something around $3 for the 48 pack. I sometimes wonder if I should have bought the 10 or 20 hour pack to hasten the process, then continue to take a lower dosage of the 48 pack per day when (if) my nose clears up(and hearing improves).

[B_in_Florida]

Got some more medication. So now I'm taking Sudaphed, Zithromax, and Prednisone. Only about 1 weeks supply of the latter two... I feel like I'm given just enough to clear up the symptoms a bit.... then let them come back again.


My nose seems to have cleared up a lot more by now, I can actually breath through it again. Still feels like it burns/is pinched inside from time to time, but at least I don't feel like there is a huge piece of cement in the blocking the upper part of my nose, and I can use it to breath again. That's something.

I hope my ears will also improve, and STAY improved. I can't deal with it constantly doing: deaf, improved, deaf, improved, deaf, improved after taking the medication on and off again and repeating the same process. Isn't there some extended process that will put these problems into remission? There has got to be some solution to this, not constant temporary fixes. Tubes are also possibly a temporary fix, aren't they? That's if they don't clear up the inflammation as they are said to.... plus they were also pretty expensive when I last asked. I had no idea they would be expensive, I thought I could get them for the same as getting my ears lanced... but like I said, I'm more interested in a permanent solution.

[annekat]

I've also got myself a neti pot, but I only used it 2, maybe 3 times. I didn't use it much because the water just flowed right into my nose, but didn't really flow through it much, didn't seem to clear it up much or at all either, and was very unpleasant the way it made me feel. Used it with this nasal solution that came with it and boiled (and cooled) water.

Are you also taking the 48 pack of Sudafed, 30 MG per pill? I'm thinking it may be affecting you differently because you may be taking higher dosage pills; that's just speculation. Target is where I bought mine, it was something around $3 for the 48 pack. I sometimes wonder if I should have bought the 10 or 20 hour pack to hasten the process, then continue to take a lower dosage of the 48 pack per day when (if) my nose clears up(and hearing improves). I use the NeilMed squeeze bottle and not a neti pot. I don't know the differences in how they work but find the squeeze bottle to be satisfactory. I may have to do it several times to get the big chunks of stuff out. But i have fewer of those big chunks now that my sinuses are destroyed by bone erosion and there are fewer places for the chunks to collect.

As for the Sudafed, yes, I take two of the 30mg. tabs, for a total of 60mg, now just one time in the morning. When I was having more severe problems, I would take another such dose later in the day, but usually no more than those two. I don't think I could tolerate taking it every 4-6 hours, as they say, all day long. Yes, I use the Target 48 pack of their house brand because it is the least expensive deal of any I've seen. I think I have used their extended release pack, too, and found it to be OK, but I'd rather just reglualte the 30mg. pills at my own rate. You can also get extended release Mucinex with pseudoephedrine added but I'd rather just regulate them individually. Not currently using Mucinex, or generic guaifenesin, because my problems are less now, but it can help to thin the mucus and make it flow better.

[annekat]

Got some more medication. So now I'm taking Sudaphed, Zithromax, and Prednisone. Only about 1 weeks supply of the latter two... I feel like I'm given just enough to clear up the symptoms a bit.... then let them come back again.


My nose seems to have cleared up a lot more by now, I can actually breath through it again. Still feels like it burns/is pinched inside from time to time, but at least I don't feel like there is a huge piece of cement in the blocking the upper part of my nose, and I can use it to breath again. That's something.

I hope my ears will also improve, and STAY improved. I can't deal with it constantly doing: deaf, improved, deaf, improved, deaf, improved after taking the medication on and off again and repeating the same process. Isn't there some extended process that will put these problems into remission? There has got to be some solution to this, not constant temporary fixes. Tubes are also possibly a temporary fix, aren't they? That's if they don't clear up the inflammation as they are said to.... plus they were also pretty expensive when I last asked. I had no idea they would be expensive, I thought I could get them for the same as getting my ears lanced... but like I said, I'm more interested in a permanent solution. I'm glad you've seen some progress in how your nose feels. I had lots of back and forth with my ears, too. I never had tubes because the eardrums already had holes in them from the infections. Those holes eventually healed, but I think I had "glue ear", or a very thickened substance in there that would not drain with tubes even if I had them. My ENT told me my ear drums were caved in from the unequal pressure and that tubes would not work. Now, one of the eardrums is eroded away from the disease, and there is some sort of gunk in there sometimes, not sure what it is, besides ear wax, and my ENT has me use antibiotic ear drops 3 or 4 days a week to keep it from becoming infected. Since this treatment, my bad ear, the one with no drum, actually started hearing better for awhile, but then I couldn't afford the drops for awhile, and the hearing got worse again. I do have the ENT clean out the wax every two or three months, too. In any case, the hearing could get better again, but I don't expect ever to not need hearing aids to function around people. Good luck with it all! I think continuing all the meds you are taking may be the best thing for your ears and possibly saving your hearing.

[B_in_Florida]

I think continuing all the meds you are taking may be the best thing for your ears and possibly saving your hearing.

I think so too (not that I actually want to keep ingesting something potentially harmful in the long run )... but I don't know how it's supposed to help if he repeatedly takes me off them, instead of a continued treatment.:glare:




Edit: Oh, just something I almost forgot to add to my previous post: I'm not coughing out my lungs all the time anymore (I do still get little coughing fits now and then), feeling like I'm coughing up fluid. I guess that's thanks to my nose not being so congested which seemed to cause mucous to flow/be forced into my throat - wild guess. Just wanted to add that since this is also kind of a journal for me.

[annekat]

Edit: Oh, just something I almost forgot to add to my previous post: I'm not coughing out my lungs all the time anymore (I do still get little coughing fits now and then), feeling like I'm coughing up fluid. I guess that's thanks to my nose not being so congested which seemed to cause mucous to flow/be forced into my throat - wild guess. Just wanted to add that since this is also kind of a journal for me. Yes, it can be hard to know whether the coughing is originating in the lungs or is from post nasal drip, but I think the latter is very common. You are probably right about that. It is amazing how well we get to know our bodies with this dumb disease.