3 + years with stuffy/clogged/crackling ears
Posted , 7 users are following.
I have had stuffy/full and crackling ears for 3 years. Driving me crazy. The crackling is triggered by clanging sounds -- dishes, silverware, etc. hitting each other, tinny sounds such as microphone amplified voices, and even voices on cell phones -- with the cell phone up to my left ear, the tinny sound of voices over a cell phone triggers crackling in my RIGHT ear, and vice versa.
Been to 6 specialists, ENTs, allergists, across 3 years etc. -- all COMPLETELY USELESS. Not a single one has been able to help me. Why not? Because if everything is allegedly "normal", then nothing is allegedly wrong -- and my hearing tests, etc. all came back normal.
Believe me, if my clogged/stuffy/crackling ears weren't "real", if I were making this up, I would not be devoting so much time to a so far completely dead end search for a solution, or even a diagnosis.
Tried decongestants, allergy medicines, fluticasone, netti potts, various ear drops. I have even tried Patulend for 30 days, a nasal spray created by a doctor in Santa Barbara, Calif. at the Ear Foundation. It did not help, unfortunately.
The ENTs I have seen claim that I don't have ETD or Patulous Eustachian Tube Disorder. They say they can't see any fluid build-up, etc. I don't care what they say or can't see: There is very clearly fluid somewhere in the ear system that is trapped and cannot get out. One odd thing is that ever since I have had this clogged ear issue, the mucous flow in my nose has dropped by 90 percent or more. It's almost as if my sinus system switched from draining out of primarily the nose to using the eustachian tube as its primary drainage conduit.
One ENT was convinced it must be a jaw/TMJ issue. I went to an oral surgeon-MD-TMJ specialist. He said I did not have any of the signs of TMJ. Plus, he said, if it was my jaw: Why would crackling be instigated by sounds like clanging dishes -- even when I am not moving my jaw? Why indeed, Mr. ENT "expert" at Kaiser Permanente Franklin (Dr. Nosan) in Denver, Colorado?!!
BTW, sleeping in a prone position for 7 hours a night allows the problem to go away -- that is, until I stand up. Then, stuff drains into my ears, and, boom, 5 minutes after standing up my ears are crackling/full and totally, utterly annoying.
Two things correlate with the start of my crackling/full/stuffy ears 3 years ago:
1) I have been on various anti-depressants for depression and anxiety, 7 different ones, actually across the past 3 years. The "experts", of course, say it "can't be" the anti-depressants that triggered the ear problem. I did go off ADs for 5 months, and problem continued. However, it's my understanding that various drugs/medicines can leave lasting consequences that last months, even years after one has stopped taking them.
How do these "experts" "KNOW" that anti-depressants could not be causing this problem? Actually, they do NOT know, but conceding this would undermine their "expert" status.
Anyway, I need the anti-depressant I am on now (Desipramine), because unlike the other 6, it is actually helping. So it's not like I could stop taking it anyway to see if my clogged ears would clear up when I wasn't taking it. But it would be nice to at least know what is causing my full/clogged/crackling ears!
2) I also started swimming regularly 3 years ago (I had never swam regularly before this) - but I don't think it's the swimming causing the stuffy/crackling ears. I've been wearing ear plugs for the past two months when swimming very religiously -- and the crackling/full/stuffy ear problem is still there. I've also used various swimmer's ear products, products that "dry" out the ear, etc. and these have NOT helped the problem at all.
The congestion/crackling is ALWAYS notably worse INSIDE buildings, houses, etc. Also is worse in low pressure weather conditions. I was tested for major allergens -- trees, grass, etc. twice. But they did not test for indoor allergens, food allergies, etc.
So, that's what I apparently need to do: Find an ENT Allergist. Kaiser Permanente doesn't have these, i don't think (I hate HMOs). Don't even know where to begin. This ear issue is a major contributing factor to ongoing struggles with depression and anxiety.
Would be awesome to finally find someone who can help.
Why is our knowledge of ear, ET issues/problems so totally back in the Middle Ages? Is it really THAT complex that we can't figure out why people have stuffed/clogged ears that crackle like crazy?
0 likes, 24 replies
dianataylor cbdh19
Posted
I am so sorry, and i know your frustration! I went thru everything u did and more! My answer was finding an ENT who got it! He understood i wasnt crazy and took ETD seriously. I had symptoms for over 3 yrs and he helped me. You are not crazy!! The dr i found was Dr Brian Weeks in San Diego, i am sure there are more drs in the US that can help u, but he helped me..don't give up...there are answers out there!!! Diane
cbdh919 dianataylor
Posted
Thank you Diana. I don't give up very easily, as I've been at this for 3 years. Also spent 5 years trying to figure out a chronic foot/leg/knee pain issue. Turns out contrary to what the "expert" doctors had to say about my leg length discrepancy of 9 mm being "too little" to cause problems, it was indeed me adding 9 mm of height to my right shoe that has reduce my right foot, ankle, leg and knee pain by about 90%.
I'm truly grateful for having discovered, on my own, that adding height to my right shoe has turned out to be a godsend. Adding the height in the sole, NOT as a heal lift, a heal lift did not work, despite what one foot expert/orthotic maker expert maintained, is what worked.
Kind of lost faith in doctors and experts at this point.
What, specifically, finally solved the problem you had? What was the fix/treatment?
Thank you :-)
dianataylor cbdh919
Posted
cbdh919 dianataylor
Posted
Immediately after the procedure?
For how long has it lasted?
Thank you.
dianataylor cbdh919
Posted
Yes, immediately after surgery my symptoms were gone...however i came home and got a terrible cold and they shut again, so i went back for a 2nd time and immediately they were open again. It's been almost 6 yrs and they are still open.
cbdh919 dianataylor
Posted
That's awesome :-) Good for you!
Morano dianataylor
Posted
Hello Diana, My name is Michael. I've dealt with Tinnitus For 35 years, both ears 24/7 and handled it. But 4 and half years ago my ears took a turn for the worse. First they clogged and had pressure, then Ive had all the same symptoms you had and then sum. Also developed depersonalization from the trauma of the violent 24/7 screaming ringing, clicking, swooshing, tapping, pulsating thumping , loud crickets, pressure,....etc..... in my head. I Can't work, etc....fighting for my life every day.
About to throw in the towel when I came across your message saying that Dr. Brian Weeks helped you. So I called hes office, my wife and I hope to see him next month. I'm praying he can help. You said he's serious about helping, most of the doctors dont care or just don't want to take the time. Sad.... thank you for your post.
Best, Michael Morano
dianataylor Morano
Posted
anne05078 cbdh19
Posted
Hi there. I live in England and have suffered this problem, that is definitely Eustachian Tube Dysfunction. Of course you have it, obvious to any layman !!
I don't want to depress you further, but I've suffered this condition since the 1980's.
In 1994 I contracted Bacterial Meningitis through this condition. Mucky mucus had sat in my eustachians so long it turned bacterial and crossed the blood brain barrier, leading me to loss the sight in my left eye and hearing down in left ear too, with tinnitus. My blocked left ear get so bad the eardrum perforates. I then see my ENT consultant (who is brilliant) and he microsuctions all the muck out. Sadly, eventually it all builds back up again and the cycle starts all over again. I know my problem is Perrennial Rhinitis, Allergies and Sinus issues. Never get colds !! I live in England and it makes no difference to our weather conditions. Damp spores in Winter and Pollen in the Summer. I use Fxonase Aqueous nasal spray twice daily. If it gets particularly bad I use Flixonase Nasule Drops, which are stronger than the spray. Lean head over bed to administer. I have recently finished a 20 days reducing method of Prednisolone steroid tablets and feel wonderful. Ears are completely clear, no Post Naal Drip, no Sinus headaches and sense of smell and taste has returned....although sadly that's starting to fade again....but all the while my ears are clear I can deal with everything else. Blocked ears is the most miserable condition.
It does seem as though you've tried pretty much everthing. Did your blocked ears start after having a cold ?
The only thing I can recommend if your doctor will prescribe them is the Prenisolone. You need relief after suffering for so long and in my opinion they will be your best bet. We all know they shouldn't be taken too often due to possible side affects. However, you may never need them again once your ears are cleared of inflammation.
Good luck and let the group on this Forum know how you get on. There are so many of us on here suffering the same, so we all symathise.
Good luck
Anne
cbdh919 anne05078
Posted
Hi Anne,
Thank you. I'm glad that you found a solution :-)
I did try a course of Prednisone about 2 years ago. It's kind of hard to remember everything I've tried across the past three years. Perhaps I should try it again, since I can't remember how long I did take the Prednisone for, or if I even stuck with taking it long enough. I may have tried it for only 7 days. I just can't remember.
To the forum: Have others out there, beyond Anne, had luck with Prednisone?
anne05078 cbdh919
Posted
Yep, try it again, but must be at least a 20 day reducing course. If they will prescribe, I don't think you'll be sorry. Mustn't stop them though as it took mine at least 5 days before they worked.
I advice most of the people on this Forum to ask for them. Some have reasons why thy don't want to take them and others maybe their doctors won't prescribe. However, like I've already said, in your case where it's dragging on and on and at the same time dragging you down, I'm pretty sure it's the only fast method for relief if you want to feel normal again.
Anne
michael11955 cbdh19
Posted
I know exactly how you feel.Like you when I get up in the morning I have little or no symptoms at all for the first 10-20 minutes .Then it cuts in.I too tend to sleep on my back & if I'm having a bad day I go & lie down for twenty minutes or so & get some relief from that "bunged up" feeling.
cbdh919 michael11955
Posted
Sorry to hear this.
May I ask: How long does your relief last after lying down for 20 minutes?
michael11955 cbdh919
Posted
It doesn't go totally after laying down & it only lasts a very short time.Just a few minutes relief.
eisenhorn cbdh19
Posted
cbdh19,
What you're describing is extremely similar to what I've been working through the last year and a half, almost a carbon copy. Kaiser HMO, two ENTs, GPs, a TMJ specialist, and Audiologists. They punt it around and shrug their shoulders. One ENT said "maybe it will get better" and "could be" while another said there was nothing to be done. I reject both of those.
I usually feel great in the morning, and it gets worse as the day goes on. Sometimes, I waken and feel the fluid in my ear rolling around. I also relate to the noise-induced problems you describe. Problem is, I have a radio on my shoulder all day at work and I have the noise in the ear all day long. It's produced some anxiety and it does help to know that I am not terminally ill and not alone.
As for relief, I have slowly improved. I cut out sugar and dairy as much as possible because I read how they increase inflammation and dairy thickens mucous. I tried some supplementation in order to assist my digestive system since it is linked to everything. They were not cures, but made things better. I've slacked off a bit with the food, but I am still a bit better. Exercise does wonders for me, probably because of its affect on the anxiety and its affect on the blood flow, which helps the crud flow. I think your analogy of the lack of drainage from the nose affecting the drainage in the ears is dead on, but none of my doctors seem to listen or care or whatever.
cbdh919 eisenhorn
Posted
Yes, the paternalistic expert advice/feedback from ENTs I have gotten has been maddening as has been the indifference of the last one I saw. He said he sees "several" people a week like me for which he cannot do a damn thing. I don't even have a diagnosis. Did you ever get one?
michael11955 eisenhorn
Posted
Dear eisenhorn,It really does seem that they have little idea about our disorder & rather than be upfront & admit it they play about with words & fudge the issue.
In the time I've been on this site I've yet to see any point being made by any ENT doctor or specialist of ETD made.
THAT GIVES YOU AN IDEA OF HOW LITTLE THEY KNOW.
eisenhorn cbdh919
Posted
I have been given a diagnosis of "ETD", but it is really because I told them I think I have it and described the symptoms. I feel like they do not like to get into the way it affects the neck, back of the skull, etc. They look in the ears and check for fluid which, if they cannot see past the eardrum, they will not see. The process with the TMJ specialist frustrated me, as it was not cheap and really amounted to nothing. One ENT had me in a hearing test, which led to another test since he got focused on a tumor that was not there and had nothing to do with the ETD. He then forgot about the ETD.
But, I am venting and I try not to do that, instead focusing on solutions. What struck me about your description was how similar it is to mine with the neck pain and how certain environments, sound, and air pressure/weather conditions can make it worse. I think the key for me is getting the fluid in my ears to drain out.
cbdh919 eisenhorn
Posted
Yes, the ENTs can't see past the eardrum -- yet they say "no fluid" trapped in the ear. Obviously, we can sense and feel the fluid. I can actually sometimes get it to drain somewhat into my throat and I notice the extra mucus in my throat -- to be graphic. However, it never drains completley out.
I have wondered about my tonsils/adenoids blocking drainage but, of course, the last 'expert' ENT I went to claimed that 'studies have shown that removing the adenoids' does not help. Funny, because there is stuff out there on prominent medical centers ENT web pages that directly contradicts what he said.
Do you know anything about this? Adenoids/tonsils blocking drainage? Know anyone whose had them removed to help with EDT?
anne05078 eisenhorn
Posted
You're are right and you have to get rid of the mucus that's causing your ears to be blocked. However, unless you have a perforation, in my humble opinion, it will take forever to drain. That's why I keep harping on about taking one course of Prednisolone to dry it all up and get rid of the inflammation. Must be a 20 day reducing course to benefit though. We are all suffering Eustachian Tube Dysfunction !!!!
I'm still good since finishing my course over a month ago, although, sadly, my sense of smell is diminishing, but I can live with that, as I've had to for the past 30 yrs and it only returns for a month or so when I've been taking Pred.
Anne
eisenhorn cbdh919
Posted
eisenhorn anne05078
Posted
anne05078 eisenhorn
Posted
The only side affects I experienced was a little weight gain and not being able to sleep. However, a month on and everything is back to normal.
My GP has requested I take a blood test to check my sugar levels, which I will do. But I really think, one would have to be on them for a very long time for Diabetes to occur. I only ever have short courses and not that often, maybe once every 2/3 yrs.
Anne
eisenhorn anne05078
Posted