Is there anyone here who also has chronic pain, ear infections, and or sinusitis?

Ambuhhlurr

Member
So I'm HoH and I grew up thinking it was normal to have what my ENT calls chronic ear disease, but I learned that not every deaf/HoH person has it and not every person with chronic ear disease is deaf/HoH. I was wondering if anyone else was dealing with both and how they handle it and if there's anything they have found to find relief from it.
The best way I can explain it is that a "simple" cold or ear infection to me is equal to like having a bad flu.
I'm talking about me being unable to function or do anything really. Like its so bad I have to shut myself in a room with no lights or sound vibrations, I start throwing Up, no balance and super dizzy, I go from hearing a little to hearing nothing at all. I've been dealing with this since I wa two years old and it's hard for me to find others who can relate with it.
 

rockin'robin

Well-Known Member
Not sure if I had the same thing as you did...but I did have a chronic ear(s) disease. My ENT Specialist told me that I was only the 2nd patient he had seen with it....Suffered with inner ear infections since I was a very small child. Multiple surgeries ever since, and after the 10th one, I'm finally free of ear infection. Had Cholestoma also...Dizzyness was a problem, and also bright lights bother me highly to this day. My ear drums were destroyed by this disease and I became totally deaf at age 14....Before that, I had 60/40 hearing.
I encourage you to see a specialist...
 

Ambuhhlurr

Member
Not sure if I had the same thing as you did...but I did have a chronic ear(s) disease. My ENT Specialist told me that I was only the 2nd patient he had seen with it....Suffered with inner ear infections since I was a very small child. Multiple surgeries ever since, and after the 10th one, I'm finally free of ear infection. Had Cholestoma also...Dizzyness was a problem, and also bright lights bother me highly to this day. My ear drums were destroyed by this disease and I became totally deaf at age 14....Before that, I had 60/40 hearing.
I encourage you to see a specialist...
I do see a specialist. I have gone through many surgeries on both my ears and sinuses since I was a toddler. My last two were to actually reconstruct my eardrums. By the age of 18 I had huge gapping holes in both ears which caused me to have a severe infection that took about half a year to fully heal before he could make sure it was gone so he could do the surgery. The surgery was an success even though I had some problems during the healing process. Since then my ear infections and sinus infections have been less, but according to my ENT my ears are just bad and I'm going to face problems with them my whole life and I have to be super careful not to damage them any further so pretty much if I have any type of ear or sinus infection I have to go see him to check and make sure that it didn't pop a new hole where he had reconstructed the holes. I'm going to try to get in soon because I'm due for my annual check up and retest for my hearing so I'll probably bring up the issues again, but according to him there's no real fix for wha t I'm experiencing.
 

rockin'robin

Well-Known Member
I really do feel for you!...It's painful and I still do experience pain in my right ear. The ear wax also does not form right (??) and stays embedded, so I see the ENT every 3-6 months for cleaning. My balance is off a lot too...But I'm so thankful I don't have anymore of those smelly, annoying ear infections...Do you use any precaution when washing your hair?...My ENT told me to "never" get any water in my ears...wax ear plugs didn't do the job...So I was advised to use cotton balls, swabbed with Vaseline, insert into both ears to keep the water out when washing my hair and bathing. It works like a charm!
I also have very big "holes" in my ears...and cover them with my hair.
Good Luck to you! and welcome aboard AD. rockin'
 

karap

Member
I never heard of chronic ear disease. But I had chronic ear infections and sinus infections.
 

Ambuhhlurr

Member
Do you use any precaution when washing your hair?...My ENT told me to "never" get any water in my ears...wax ear plugs didn't do the job...So I was advised to use cotton balls, swabbed with Vaseline, insert into both ears to keep the water out when washing my hair and bathing. It works like a charm!
I also have very big "holes" in my ears...and cover them with my hair.
Good Luck to you! and welcome aboard AD. rockin'
I have to avoid water as well! My ENT told me the same thing. He said in general that ear plugs are not good to use because a little water still get in and the little water that does get in cannot get back out so it ends up in your ear one way or another. I also was advised to use Vaseline with cotton balls. I put a little bit around the inside opening of my ear, a generous amount on both sides of the cottonball, and then some around the cotton ball when it's in my ear. Do you have to wear foam earplugs when around a lot of super loud sounds?
Thank you so much!
 

Ambuhhlurr

Member
I never heard of chronic ear disease. But I had chronic ear infections and sinus infections.
I had never heard of it either until I was 18 and my ENT said I had it after looking at my history. I can link you to a site that will explain it. It's actually from what I understand a broad term and it has it's own spectrum which does include does with chronic infections and such relates to ears and sinus.
http://www.owensearcenter.com/hearing-disorders
 

rockin'robin

Well-Known Member
I have to avoid water as well! My ENT told me the same thing. He said in general that ear plugs are not good to use because a little water still get in and the little water that does get in cannot get back out so it ends up in your ear one way or another. I also was advised to use Vaseline with cotton balls. I put a little bit around the inside opening of my ear, a generous amount on both sides of the cottonball, and then some around the cotton ball when it's in my ear. Do you have to wear foam earplugs when around a lot of super loud sounds?
Thank you so much!
Foam ear plugs?...No, never had. I'm just sensitive to vibrations. Jet planes flying very low do bother me a lot. At one time, I did live in an area where they had to practice, and I had to move...LOL....
Do you have tinnitus? I had it for years...and now have "musical tinnitus".
 

Ambuhhlurr

Member
Foam ear plugs?...No, never had. I'm just sensitive to vibrations. Jet planes flying very low do bother me a lot. At one time, I did live in an area where they had to practice, and I had to move...LOL....
Do you have tinnitus? I had it for years...and now have "musical tinnitus".
I am sensitive to the vibrations as well. By foam earplugs I mean the type that blocks noise. My ENT has me being them everywhere bc I'm so super bad when it comes to even like vibrations from like the car and it can be super painful. I've had tinnitus since my right side eardrum reconstruction back at the end of 2013. Is it bad that don't know what musical tinnitus?
 

rockin'robin

Well-Known Member
Musical tinnitus...late-deafened people have it. All the noises and music I had heard before becoming totally deaf, is still there....always have a difficult time trying to go to sleep...so I exhaust myself and try to avoid caffeine close to bed time. It's never "silent" in my head...LOL...and took a very long time to try to "control" the tinnitus and ignore it...(easier said than done)...
Since you still have some hearing, then maybe the foam earplugs help you?...I am profound deaf (both ears) and have no ear drums left due to the disease.
 

DeafNerdMommy

Well-Known Member
I have to avoid water as well! My ENT told me the same thing. He said in general that ear plugs are not good to use because a little water still get in and the little water that does get in cannot get back out so it ends up in your ear one way or another. I also was advised to use Vaseline with cotton balls. I put a little bit around the inside opening of my ear, a generous amount on both sides of the cottonball, and then some around the cotton ball when it's in my ear. Do you have to wear foam earplugs when around a lot of super loud sounds?
Thank you so much!
When I had tubes in my ears they told me to avoid water but gave me custom ear plugs. Water still got by them. Then I used a q tip to dry out my ears.
 

AlleyCat

Well-Known Member
As all the others, I have not heard of chronic ear disease. This sounds made up.

However, if you are dealing with dizziness, I would say either Menieres's or Vertigo. Either way, see your family doctor.
 

Ambuhhlurr

Member
As all the others, I have not heard of chronic ear disease. This sounds made up.

However, if you are dealing with dizziness, I would say either Menieres's or Vertigo. Either way, see your family doctor.
It's not made up. It's just a broad term. Chronic ear disease basically covers most chronic conditions related to ears or even your sinuses. You can be deaf/hoh and not have chronic ear disease or you can be hearing and have chronic ear disease. It's just basically having physical ear problems that have nothing to actually do with your hearing status (however people with chronic ear disease can lose their hearing or become deaf later in their life due to the damage being done to the person's ear.
There's probably many other sites, but here's one I usually link that people tend to find helpful:
http://www.owensearcenter.com/hearing-disorders
 

Ambuhhlurr

Member
Musical tinnitus...late-deafened people have it. All the noises and music I had heard before becoming totally deaf, is still there....always have a difficult time trying to go to sleep...so I exhaust myself and try to avoid caffeine close to bed time. It's never "silent" in my head...LOL...and took a very long time to try to "control" the tinnitus and ignore it...(easier said than done)...
Since you still have some hearing, then maybe the foam earplugs help you?...I am profound deaf (both ears) and have no ear drums left due to the disease.
The foam ear plugs I only use when around loud noises, not because of the noise but because the sound vibrations. I mean my last ENT was also worries about the loud noise causing more damage to my ears but really I don't hear the music that much, just the vibrations which hurt if they are too strong. I'm actually going to go see a new ENT except this guy is a specialist among specialists. He was recommended by an audiologist who my mom knows through work that wasn't connected to my old ENT. When my dad and I were telling her about my hearing and ear problems and how my ENT basically gave me no options and said I'd just have to live careful my whole life. She did a full screening full of charge and in the screening it showed that I have moderate to severe hearing loss and that my biggest problem is I don't hear vowels. Though she thinks there are options that would make things easier. Also she let me see what my eardrums look like. My right one is disformed bc of all the surgeries and the reconstruction and my left one is basically gone.
I know what you mean about the tinnitus though. Being HoH or Deaf isn't as silent as people think it is.
 

Bluetulisia

New Member
Musical tinnitus...late-deafened people have it. All the noises and music I had heard before becoming totally deaf, is still there....always have a difficult time trying to go to sleep...so I exhaust myself and try to avoid caffeine close to bed time. It's never "silent" in my head...LOL...and took a very long time to try to "control" the tinnitus and ignore it...(easier said than done)...
Since you still have some hearing, then maybe the foam earplugs help you?...I am profound deaf (both ears) and have no ear drums left due to the disease.
I am a clairiaudient. I “hear” music. I like. I’m getting my CI removed for medical reasons.
 

Radcliff

Member
I sympathize. As a child I had chronic ear infections. My infections got worse, I was always sick as a child. I ended up with TB in my ear, and now I have virtually no immune system. I can't travel without being bed ridden (which totally defeats the purpose of traveling) and I suffer from chronic pain on my face. My family just think I'm over dramatic
 

vegandreamer

Active Member
Do you have tinnitus? I had it for years...and now have "musical tinnitus".
I have tinnitus but it's not as bad as it was a several years ago when the noise was so loud I couldn't bear it. In my experience there is
tinnitus and there is TINNITUS. Musical tinnitus is not so bad.
 

vegandreamer

Active Member
Sorry to hear about all you out there with chronic ear infections. Regular ear infections are bad enough. In fact I really HATE having ear infections and Ear doctors poking in my ear and removing all the wax.
 
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