Is it possible to have the 'autophony' (voice sounding in head) symptom when you have a blocked eustachian tube, rather than an open one? (PET)

Also if you have PET is it always a constant problem?

I have the same symptoms as PET but it's on and off. The doctor hadn't heard of PET and said that the eustachian tube is always open anyway. He reckoned the tube was just getting blocked. Could he be right?

I find it comes on whenever I'm in a hurry or stressed about something. Does anyone else get that?
It goes when lying down.

Any advice would be greatly appreciated...

Does anyone have a blocked eustachian tube? Could you please describe your symptoms? Thank you.

Pheobe,

I'm sorry I can't answer your clinical questions, but I do get that also. Strange thing is, I just had this yesterday. I was having a very emotional talk with my daughter about her behavior "issues" as of late. Got all upset, and this came on.

Weird part is...... I don't and have never thought anything of it, until I read your post.

In searching for your answer, you have actually helped me. An important, yet albeit, annoying symptom that may very well be quite helpful in finding out what in the world is wrong with me someday. An addition to my list, if you will.

Just proves, every single post matters on this board. Wish I could help you more.

Much love,

SL :angel:

Thank you for replying!

When your voice sounds loud in your head, try turning your head upside down. Does it go away? Mine does while I'm actually upside down, but will come back when I stand back up again.

I'm sure there is a link between stress and it coming on, like you say, when you got upset and it happened. I often get it when I'm nervous before going out, which is the most awkward time to have it! Do you find that trying to hold a conversation is really annoying because you slur your words?

Have you been to a doctor about it? What did they say?

:) Anyway, thanks again for replying :)

Thank you for replying!

When your voice sounds loud in your head, try turning your head upside down. Does it go away? Mine does while I'm actually upside down, but will come back when I stand back up again.

I'm sure there is a link between stress and it coming on, like you say, when you got upset and it happened. I often get it when I'm nervous before going out, which is the most awkward time to have it! Do you find that trying to hold a conversation is really annoying because you slur your words?

Have you been to a doctor about it? What did they say?

:) Anyway, thanks again for replying :)

hi pheobe,

when you hear your voice really loud, do you hear your breathing in the ear really loud like a megaphone?
there are several conditions that cause autophoney.
lib

Yes, it's so loud sometimes that it makes me slur my speech.
Everything outside my head I can hear normally.
It's only a small problem I'm sure but it's kinda debilitating when it happens.

Yes, it's so loud sometimes that it makes me slur my speech.
Everything outside my head I can hear normally.
It's only a small problem I'm sure but it's kinda debilitating when it happens.

can you hear and feel your breathing in that ear really loud?
lib

Thank you for replying!

When your voice sounds loud in your head, try turning your head upside down. Does it go away? Mine does while I'm actually upside down, but will come back when I stand back up again.

I'm sure there is a link between stress and it coming on, like you say, when you got upset and it happened. I often get it when I'm nervous before going out, which is the most awkward time to have it! Do you find that trying to hold a conversation is really annoying because you slur your words?

Have you been to a doctor about it? What did they say?

:) Anyway, thanks again for replying :)


Hi Pheobe,

I don't put my head upside down, as this usually makes it worse and makes me spinny when I bring it up again. I get it quite often, now that I've had it brought to my attention. Just last night, I was telling my husband about it.

Yes, I do slur my words, and also get "stuck" in conversations because I cannot think of the word I need. Like my vocabulary has just been deleted. This is almost daily, and makes me feel really embarrassed. I now look to my husband for words, sometimes he can help me "catch it". When it's really bad I usually cry, because it feels as though my brain is falling apart or I'm losing my mind.

I have been to my family doc and a neuro-oto, who ordered an ENG which I refused to go to because they would not allow my husband in. I'm just plain stuck now, and have given up much hope. Having a real down period. I feel like hell today, and am scared to death. I'm alone during the day, and my fear during this time I'm alone is increasing. I don't know why either. I am very afraid something will happen to me while I'm alone.

Anyway, I'm going to see my family doc again soon, and when I do, I'm going to tell him everything. I never remember to take my list. I'm lucky enough that I have a doc who I can trust, who cares about me, and won't think me a hypochondriac when I tell him how afraid I am.

Please let me know how things are going with you. I hope you are having a good day.

Love from SL

Lib,

I don't know really. I can hear my breathing in my ear, but i don't really notice it if I'm not speaking, so it can't be that bad. Do you get it? Have you been diagnosed?


Sharalee,

Sounds like you're going through a bit of a rough time hun, I hope you are better since your last message.
It sounds as if you have a bit of anxiety going on there. I am quite an anxious person myself, and often worry there is something more serious going on with me. So I know where you're coming from. I'm glad to hear you have a supportive husband. Seems a bit strange to me that he wasn't allowed in with you. Did they give a reason? I would push for more to be done. Even if there is no complete cure, it would be good to get to the bottom of it to set your mind at ease. Good luck.. x :)

Lib,

I don't know really. I can hear my breathing in my ear, but i don't really notice it if I'm not speaking, so it can't be that bad. Do you get it? Have you been diagnosed?


Sharalee,

Sounds like you're going through a bit of a rough time hun, I hope you are better since your last message.
It sounds as if you have a bit of anxiety going on there. I am quite an anxious person myself, and often worry there is something more serious going on with me. So I know where you're coming from. I'm glad to hear you have a supportive husband. Seems a bit strange to me that he wasn't allowed in with you. Did they give a reason? I would push for more to be done. Even if there is no complete cure, it would be good to get to the bottom of it to set your mind at ease. Good luck.. x :)

phoebe,

when you speak does it sound like wind? do you feel the ear drum move?
i have middle ear myoclonus and some palate or e tube myoclonus.
it can cause patulous like symptoms. lib

Pheobe,

I have the same symptoms you have. I find 90% of the time it comes on when i'm under any type of anxiety or physical activity (yard work, playing catch with my son) and it starts around the afternoon. Mornings are good. I wonder if there is a connection between the brain and the ET.
FJ

Lib,

No that doesn't really sound like what I've got. I don't really think I can feel the ear drum moving. I'll look it up though, thanks.
Does your ear itch? Mine drives me mad! It feels like it's itching down where the eardrum is. The doctor thought it was just eczema in the ear, but I find it hard to believe it's not related. Wouldn't I have eczema in both ears?!

FJ,

Sorry to hear you have the same problem. There might be a connection. My guess is that the internal pressure when we're stressed causes the tube to open. Do you have symptoms every day? Do you ever go days on end without noticing it? Do you ever get an itch inside your ear that just doesn't go away? Have you been diagnosed?
Sorry for the 20 questions! :)

Pheobe13,
I have symptoms almost every day. I've been keeping a daily log. I've been told It was "Eustachian tube dysfunction" and to grin and bare it. I've just met with an allergiest and had allergy testing done 3/8/05. results that I have some allergies. and x-ray shows swelling in sinus area. I asked the doctor if this could be a connection with my ETD, she said yes. she put me on some medication (type of steroid) and a nasal spray to reduce the swelling. Have a follow up in 10 days. time will tell.
FJ

FJ,

I have also been prescribed a nasal spray by my doctor. The thing is, I read that if you have PET (where the tube is open) the spray will make matters worse as the steroids in it are meant to reduce the swelling. (It sounds like you may need it though, if you have swollen sinus's.)

I read that the spray stops your body being able to fight infection properly. So I've only used it once. The main chemical is bec..something. Long term use has been shown to stunt growth in young children. I'm not gonna use it until I get a proper opinion from the ENT doctor.

Eustachian tube dysfunction is a bit vague. Did they say if the tube is getting blocked or that it's open too much?

Thanks for replying, Pheebs :)

Pheebs,
None of the ENT's have said that the ET is blocked or open. They just say I have ETD. I don't know how they can make that determination unless some type of x-ray or something has been done to see what is actually happening. And would you believe that every time I have had an appointment with an ENT I don't have the symptoms and they say everything seems to be functioning well. So i'm sure that doesn't help.

Well I'll work with the allergist for the next couple of weeks to see what comes out of it. If it is PET I'm sure my symptoms with get worse from the steroid medication. With any luck it is an allergy and will get better.

I met with my primary doc this week. I started to explain, e-tube being open, PET and autophoney. He looked at me with the longest blank expresion and replied "your blood pressure looks good"

I do have an appointment with Dr poe in May. Have you had any allergy testing done?

FJ

No, I haven't, but that's a good idea. I have other stuff going on as well that might be caused by an allergy, so maybe it's all linked. It's weird that there are so many sites on the internet about PET, but no doctors seem to have heard of it. Very strange. It's just sod's law really that the symptoms will go away when you get there! :rolleyes: Gotta laugh at it really, it's bound to happen.
I'm on a waiting list to see an ENT doctor, but might be a couple more months yet till I get to see one. They'll probably say ETD, just like they did for you. Ah well.

Keep me posted on anything you find out if you can, would be interested to know if it turns out to be an allergy for you. :)

Pheebs,
Just an update. I have been take the allergy med. for about 7-10 days now. I also stayed out of my house to see if there was an improvement. There was some improvement not 100%. I've been back in the house for 2 days and I been having the autophony symptoms more than when I was out. I meet with the allergist again next week to see If the I have made an improvement. Hopefully they will take the x-rays again to see if there is any change. How about you any better or worse?

FJ

That's really interesting, that maybe you're allergic to something in the house. It might be coincidence though? Have you thought it might be the heating in the house, or the dry air? Because that probably dries the fluid out that's in the eustachian tube, so leaving an opening to cause the annoying symptoms? (I notice it more when I'm dehydrated actually.) Though, the allergy medicine is meant to reduce any inflamation, so would in theory open the tube, rather than close it, so I don't know. Not that we know if the tube is open or blocked too much!!
The thing is, as I understand it, I didn't think that blocked tube sufferers got the autophoney thing?
Mine comes and goes, and has actually not bothered me much this week. Maybe because I haven't been doing anything too stressful.
Still waiting for appointment to see someone, so I won't find out about mine for a while. Glad your symptoms are better anyway. Would be nice to know they've sorted the problem out for you. :)

Pheebs

Also.. I notice I get it when I'm tired and can't stop yawning. Does yours start when you yawn?

Pheebs
I haven't updated for a few weeks. Here is where I'm at. I have started allergy shots (7 shots weekly for 6mo. then once a month for abourt 2 years) and I have been using Nasonex every day. I have been symptom free for about 10 days. prior to that consistent decrease. I am allergic to cats, mold, dustmites, several different out door things. Cat is the highest allergy (and yes we have a cat).

I also met this week with a 3rd ENT. On my x-ray showed a polyp os cyst. He said it was very commond and not to be concern. I then told him the entire story and explained my symptoms. My big question was "is the ET open or closed". He said the symptoms I was explaining to him was that it sounds like it could be open but then when you pinch your nose and blow it temporarily relieves would mean its closed. He said that it is very hard to diagnose if the tube it to open. (again $200.00 not much help).

Well I'm hoping that it is allergy. I will know more in the next few weeks and month, that when it usually gets bad. I still have an appointment with Dr. Poe in May. Lucky for me I'm only minutes from Boston.

How have you been? I'll try to post every week to keep an update.

FJ

Hi pheebs,
I noticed you haven't posted anything since 2005. But just wanted to let you know your symptoms sound just like mine. I had SSCD. I just had surgery in Baltimore,Md. by Dr. Lloyd Miner. All the noises in my head are gone. Your local ENT don't have a clue. It took me 5 years to find the right Dr. and I will be forever greatful.
Good luck,
hpace