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Old 08-18-2009, 09:41 AM   #1
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Roaring tinnitus - Patulous eustachian tube?

I am looking for help. I have trawled the internet since the start of the year and gone to tewo ENTS but I am getting no where. I will try to keep my post as short and concise as possible, but want to include a lot of information - I really hope there is someone out there who can recognize my symptoms and offer me some hope and/or direction, as I just donít know what to do anymore. I donít overstate things generally, but I really feel like what Iím going through is going to be the death of me.

My problems started 7 months ago. After a once off rehearsal with a band (actually just me on guitar and a drummer) I had trouble hearing (the next day). Everything was muffled and not sharp. I became very worried and anxious as I didnít understand what was happening. After about 16 or 17 days my ears Ďpoppedí, a day or two apart, as if I had been on a plane. I could hear again clearly in each ear.

However two days before they popped a roaring tinnitus began in my right ear and has never stopped. It began very suddenly, and faded in. It sounds very like the noise you get when you yawn, a roaring , windy, airy sound very low frequencies, or like the noise you hear on a plane of the air rushing past.

Over the months since the noise started, I developed soarness in my ear, and the right side of my face, as well as sinus like pain in my teeth and headaches. The pain has been getting worse and worse, and is now almost more annoying than the noise. It feels very tight in my right ear, I think the feeling is on my ear drum, like a clothes peg or something. It is there about half of the day, and becomes excruciating, and then sometimes the pain fades in to the background a little. Hot drinks and hot soup seem to help sometimes. But it comes back.

Additionally I frequently feel like something is rattling around in my ear. If I am on a bus, or in a car, I feel a vibration like something hitting off something else, near where I imagine my eustachian tube is.

Also my ear Ďpopsí all the time, not like if I have changed altitude. It is a rough crunching noise and feeling, and it is triggered by the slightest noise - such as someone speaking near me, putting a cup down, etc Just in my right ear.

Finally, three weeks ago the hearing in my right ear went crazy - the effects seem to be that of patulous eustachain tube. I could hear my own voice like an echo, and it seemed so very loud. When I spoke I could hear static and noise, and couldnít hear outside things normally. It felt so straange. It passed after a few hours.

I have been to see two ENTs about it. The first, about two months after it started, said it was probably a virus, which had left me with this. There was nothing, he said he could do.

I went to a second, just last week, for a second opinion. He did a thorough exam, looked in my nose and ears. He said there was no sign of infection, and that the most likely explanation was damage to my cochlea. I asked him if this would cause the pain in my face and ear and he didnít seem to think so. I asked him about the rattling feeling, which he said was probably always there, but that I was only noticing it now as I was concentrating on that area. I find this impossible to believe!

My theory is something along these lines; back at the very start when my hearing was muffled, my eustachian tubes were jammed shut due to shock(I hadnít been around music or noise in quite a while before the rehearsal), but before they released, a part of the eustachian tube, at the ear end, opened up, or the muscle was damaged, and as a result it is not closing properly anymore. This is having creating problems with pressure in my ear which is causing the pain in my ear drum, and stopping me from hearing clearly.

This fits with my eustachian tube opening up comletely three weeks ago, as part of is always open?

Has anyone gone through this? Or can anyone tell me if my theory is even plausible? What do I do next? My life has been completely dominated by this curse. I feel so bad for all the people who go through serious ear problems like this, until you have experienced it you have no idea how frustrating and dehabilitating it can be.

Many thanks.

 
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Old 08-18-2009, 10:51 AM   #2
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KSM79 HB User
Re: Roaring tinnitus - Patulous eustachian tube?

Hi Paul, Really sorry to hear about ur symptoms. I, like many others on this message board also suffer for Patulous Eustachian Tube and I know how it can be. It is life changing.
But I am just a lil confused about your post although I am no doc.
Regarding the tinnitus, it is not necessary that it is the root cause of whatever you have (not sure yet). Many ppl have tinnitus and live perfectly normal lives. I had tinnitus before i got PET, but my PET came because of a combination of stress, a lean frame, loss of weight and a bad head cold.
The primary symptom of PET is autophony( hearing your own voice when you talk, and your voice seems like your talking in your head). I dont suffer from any face pain or Sinus type pain like u mentioned. But yes lying down helps a lil, relaxes and close the Eustachian Tube momentarily. But no pain as such. And my hearing is excellent.
But I agree when you say it affects you even when there is the slightest of noises ( like putting down a cup). Thats the ear drum moving coz there is no equalization of ear pressure. So the sound goes through you ET's and hits your drum so it vibrates.
You should have your ENT do an endoscopy on you where they put tubes up ur nose to look into your ET. This will confirm the PET if it is indeed that. Other than that you can do a Tympanogram. Tympanometry is an examination used to test the condition of the middle ear and mobility of the eardrum (tympanic membrane) and the conduction bones by creating variations of air pressure in the ear canal. This should again confirm PET. But again, not sure why your getting pain. I can understand the tightness.
Look up other posts from people on here like Mine, Fluffyhouse and many others and also look up Dr.Poe ( PET specialist and an expert in PET surgery). Dr.Poe is the only answer to this problem according to many people who have PET.
Keep in touch and hope you figure out what exactly is bothering you.
Take Care
Kunal

 
Old 08-20-2009, 12:31 PM   #3
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thelittlesthobo HB User
Re: Roaring tinnitus - Patulous eustachian tube?

Thanks so much for your post.

I am confused as well - I don't think that PET is what I have in the sense that other people like yourself have. Only once - three weeks ago - have I experience those 'autophony' and echoing sensations.

Most of the time the feelings are different. There is a ringing resonance I get when I hear certain frequencies (people talking on the news etc.) that sounds like they are speaking into a glass bowl - bring bring.

The pain and discomfort are very bothering.

Can I ask you - you say that your PET was brought on in part due to weight loss. MY ENT said that in many cases of PEt weight gain can help. Did this help you?

I am quite underweight myself and probably had lost weight shortly before this happened (I went on to a vegetarian diet about October in the London winter, and my tinnitus began in late January).

Anyway - thank you again for your kind comments.

Paul

 
Old 08-20-2009, 01:47 PM   #4
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Re: Roaring tinnitus - Patulous eustachian tube?

Paul,
No the weight gain hasnt helped me at all. In fact nothing has helped me. I am going to Consult with Dr.Poe about his new Catheter Insertion method. Apparently he has had some success.
Again, I have no pain as such. Autophony is the most annoying symptom. Tinnitus- I can live with.
Well keep trying until you find an answer. Don't give up.
-Kunal

 
Old 08-24-2009, 03:17 AM   #5
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thelittlesthobo HB User
Re: Roaring tinnitus - Patulous eustachian tube?

Thanks Kunal

I won't give up - and will post again when I get somewhere - good luck with your consult!


Paul

 
Old 09-02-2009, 12:34 AM   #6
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Joleecsd HB User
Re: Roaring tinnitus - Patulous eustachian tube?

I have exactly what you describe, can you recommend anyone in London or England to see, someone that will be more educated in PET than the usual ENT Dr's?

 
Old 09-06-2009, 08:30 AM   #7
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thelittlesthobo HB User
Re: Roaring tinnitus - Patulous eustachian tube?

Hi Jole

Sorry to hear you are also having problems with your hearing.

I am afraid I cannot reccommend anyone to you. i have seen two ENTs in Ireland, both of whom were sympathetic but unable to offer me any constructive help.

For me the pain in my ear is the biggest annoyance as when I am out and about - cycling, in the city etc, I do not hear the noise, but the pain and discomfort are constant.

I have begun to wonder if the pain is actually coming from my ear canal (it is hard to pinpoint) as I have a very sensitive spot around some bone or cartillage just on the entrance to the canal.

I also remember now that the I had used new plastic ear plugs a couple of days before the noise started, and the day it started I visited my GP who firmly stuck a torch in to the canal. I remember thinking at the time that he really jammed it in quite violently.

The hum started that evening.

I am now going to try and investigate this avenue.


Good luck finding a good ENT, and I hope you get over yours and I get over mine.

Cheers


Paul

 
Old 09-25-2009, 04:44 AM   #8
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Re: Roaring tinnitus - Patulous eustachian tube?

I too have been searching the net for answers as I am going made with this ear problem. I think I shall go to the doc's to see if they can do anything, but reading your posting I'm not sure. I don't think my symptoms are exactly the same as yours but this is how it is. I posted this as a question to an online doc so it will be interesting to see his reply. I will post it to you as soon as I know.

Over the past few years, on odd occasions I get a vibration in my ear. It is not a ringing noise and it is not a steady noise. It comes and goes within a period. The only way I can describe it is if you are in bed with your head on the pillow and you can hear a car several roads away, it sounds like that. I have been to the doctors several times and seem always to get dismissed. It's like a constant, hum, hum, hum, hum. Over the past few weeks it has come with a vengeance, not only does it affect me at night, it is also happening in the day too. The only thing that I feel helps it is to put in an ear plug. It doesn't make it go, it just helps. When it is really bad it feel like I have a lot of pressure in my head and feels like my head is going to explode. It is really causing me a lot of upset at the moment, as when it is at it's worst, I cannot do with people talking to me, especially my husband and 4 year old when I get in from work. Please help as I feel this is ruining my life.

 
Old 09-29-2009, 02:52 AM   #9
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thelittlesthobo HB User
Re: Roaring tinnitus - Patulous eustachian tube?

Quote:
Originally Posted by Jayne1966 View Post
I too have been searching the net for answers as I am going made with this ear problem. I think I shall go to the doc's to see if they can do anything, but reading your posting I'm not sure. I don't think my symptoms are exactly the same as yours but this is how it is. I posted this as a question to an online doc so it will be interesting to see his reply. I will post it to you as soon as I know.

Over the past few years, on odd occasions I get a vibration in my ear. It is not a ringing noise and it is not a steady noise. It comes and goes within a period. The only way I can describe it is if you are in bed with your head on the pillow and you can hear a car several roads away, it sounds like that. I have been to the doctors several times and seem always to get dismissed. It's like a constant, hum, hum, hum, hum. Over the past few weeks it has come with a vengeance, not only does it affect me at night, it is also happening in the day too. The only thing that I feel helps it is to put in an ear plug. It doesn't make it go, it just helps. When it is really bad it feel like I have a lot of pressure in my head and feels lik dehabilitating e my head is going to explode. It is really causing me a lot of upset at the moment, as when it is at it's worst, I cannot do with people talking to me, especially my husband and 4 year old when I get in from work. Please help as I feel this is ruining my life.
Hello Jayne

First - you have my sympathies - I definitely know what you're going through, as do a lot of people of have had similar problems. It's hard, I think, for people who haven't had ear problems to understand how they can be.

OK. Try to stay positive. I try, but probably at least once every day I get in to a bad mood and I feel angry and sorry for myself. Don't let yourself go in to a spiral. Your positive energy is what is going to help you through this.

I've had the noise and pain I described for about 8 -9 months now. It's stops me hearing - I am - or was - a musician, but I take no pleasure from listening to music never mind playing it now, as I can't hear properly. But I live in hope that I can get it all back.

Doctors have been no help to me - my dentist was the most helpful. He hinted at TMJ as an issue, though not necessarily the proximate cause of my tinnitus.

Do you have any pain, or tension?

I get incredbile tension and pain in my chest, on the right side, as well as my neck and my face, on the right side, again.

When I stretch gently and slowly, I can usually relieve the chest tension to an extent. So I am going to start a yoga course in the hope that that can help.

TMJ does seem to be a bit mysterious, hard to diagnose with certainty, hard to treat safely and definitively. I have read that in many cases the best treatment is little to no treatment, and give it time. Hoping that will be the case with myself, and that the symptoms will ease.

I can't say that this necessarily applies to you, but I would definitely advise you to look in to it, if you have not done so already, especially if you have any discomfort in your ear, or sinuses. Perhaps go see a dentist for some advice.

Finally. Be careful with the internet - there is a lot of information on it, and some of it can be get you freaked out and more down about things, you convince yourslef that you have this or that, and you read horror stories - remember there are many people who go through bad times and fully recover who never even get to posting in forums etc! So stay positive!

Hope you find some relief soon.

Kindest regards


Paul

 
Old 10-02-2009, 07:24 AM   #10
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linggss HB User
Re: Roaring tinnitus - Patulous eustachian tube?

it was a month ago , and still happening , i also have tinnitus pretty loud , something like vibration.... and i can hear click sound at my left ear , it makes me stress , sometimes i open mouth to drain fluid that makes better.
go to some ent says nothing wrong for my ear, what i must do , it's like eusthasian tube dysfuntion ... , sometimes i get headache too....
helpppppp.....

 
Old 08-29-2011, 12:32 PM   #11
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bonniedaddy HB User
Re: Roaring tinnitus - Patulous eustachian tube?

Hi Paul,

If you are still active on this Healthboards thread, please check out my post on "Vibration in Ears" by bonniedaddy. It sounds like we have similar symptoms and I have done some research we can share.

 
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