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Crackling in ears when swallowing - Patulous Eustachian Tubes?

Posted , 14 users are following.

jennybean17
jennybean17

Hi all! First post here so hopefully some of you may be able to help me. 

In June I woke up one morning after a loud concert with vibrating in my right ear. Terrified by this I went to an outpatients appointment at my local hospital, and was told that I was suffering from Eustachian Tube Dysfunction and he prescribed some tablets to treat a middle ear condition as well as decongestant nasal spray. With my ears not getting any better, my GP prescribed me a different steroid nasal spray, which did not work. Since this happened, my ears have become progressively worse and now am afflicted with the following conditions.

My symptoms are:

- Tinnitus in both ears

- Right ear Eustachian Tube open at 3mm, left ear Eustachian tube also open (explained below!)

- Both ears 'crackle' when swallowing. Some relief offered after yawning as first swallow is sometimes not affected.

- Left ear will occasionally 'click' when talking/walking, akin to rice crispies popping.

- Right ear will occasionally be affected by autophony - usually during/after walking/exercising but (luckily) short lived, max 10 mins.

- Occasional earache at front of ear and across temples

- Feeling of pressure

- Good hearing but being able to pick up a lot of noises I previously wasn't able to hear/tune in to. Crashing plates etc hurt. 

On a family holiday to Prague my ears were so bad that I was taken to a medical centre out there and they performed an endoscopy which immediately showed that I had patent Eustachian tubes, with both permanently open - my right at the worst, open to 3mm.

However on return to the UK the ENT doctor I saw here was dumbfounded - all the tests they undertook came back that my ears were fine (no hearing loss) and that I didn't have Eustachian Tube Dysfunction (which I knew now) however couldn't tell me what the issue was even though I told him it was Patulous, with evidence of my Prague medical report. He prescribed me a steroid nasal spray (of which I haven't taken after research online of nasal sprays having an adverse effect) and told to come back in 9 months. 

Earlier this week my autophony was coming back quite intensely and not related to exercise so I'm become really constantly anxious whenever I swallow incase it comes back.

Googling my symptoms has left me feeling incredibly low and not knowing how to move forward, or what the future holds for my ears. I've not been able to sleep for nights on end due to the crackling whenever I swallow. It makes it especially worse as I work in music and haven't been to any work events recently due to being concerned for my ears!

I would really appreciate it if anyone here could offer me some advice as to moving forward with this condition and how to manage it. Has anyone had similar conditions and how did you deal with them/help?

Thank you!

0 likes, 20 replies

20 Replies

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  • aaron_78693
    aaron_78693 jennybean17

    Posted

     Hi Jenny,

    Sorry it has been so long since anyone has posted anything. I saw your message and feel compelled to help. I have the same symptoms as you. Right now I only get autophony during intense exercise as of yet. The rest of the time I have;

    -crackling/squelching of ears when I swallow

    -clicking/feeling the tube pop open inside my head and against my eardrum after swallowing - always happens when i lie down and swallow for some reason

    - hissing tinnitus

    - pressure build up in the ear

    - earache occasionally

    -pain sometimes when the tube snaps open

    - a bunch of other stuff I've probably forgotten to mention

    What I wanted to say is - you are not alone. There is a facebook group (2 in fact of which I am a member of both) - just go on there and type in patulous eustachian tube - you should find it. There is a TON of members, all experiencing the same thing. Here you can find out more about the treatments available, medicines, recommendations to dietry changes etc. Also you can find out who the best doctors are in the world treating this.

    I totally understand your concerns for your future ears. I have spent hours researching and talking to doctors over the world to get the best help. What I will say to you is that success of surgery/medicine varies from patient to patient and you may find that more often than not.. people report negative results. HOWEVER I want to let you know that while a "complete cure" may be difficult... I can guarentee you that the current treatments offered will get you at least some relief to make you more comfortable. Also though I have spoken to many who have had treatment and have cured it completely and I hope you are one of them too.

    If you have any more questions drop me a mail. I know all about the current treatments/surgeries available and who to see for them so I'd happily share if you wish. Check out the facebook groups if you have not done so already.

    I wish you well.

    Aaron (London, UK)

     

    • leila29439
      leila29439 aaron_78693

      Posted

      Hi Aaron

      I have been reading your replies and you seem to know what your talking about.

      I have just had my middle ear drained in an unusual way. 

      The doc tested my hearing with a musical tuning fork. I could barely hear it with my death ear and could mostly hear it with my "good" ha ha ear.  Then he put the tuning fork in the centre of my forehead and I could hear it clear as a bell with my deaf ear (first thing I had heard in weeks) and could barely hear it with my "good" ear.  Within seconds I was swallowing yucky stuff.  My ears continued to drain for 8 hours with 2 major mouthfulls and 2 very significant dizzy spells.  Now my deaf ear is my better 1.

      I was just wondering if you know anything about sound virations draining ear fluid as I have looked and couldn't find anything.

       

    • aaron_78693
      aaron_78693 leila29439

      Posted

      Hey Leila - just picked this up on my emails. I am afraid I haven't heard of this method draining ears before. But I would see it as a good sign! My guess would be what has happened is that the vibrations to your eardrum/eustachian tube caused the sticky fluid to finally shift and thus drain down your throat. Give it some time to get fully better but I reckon it won't be long until you start feeling great again and things balance out in both ears smile

       

    • leila29439
      leila29439 aaron_78693

      Posted

      Hi Aaron

      Thats what I think happened too.  Not surprised you haven't heard of it working before cause I can't find anything either. 

      I got pointed to some info about tuning forks See Weber Test.

      Hopefully it won't be months before its all better but 20% annoying is so much better allready. Still no change from yesterday, mores the pity but at least its not filling back up YEAH.

    • Casey1337
      Casey1337 aaron_78693

      Posted

      If you’re still active please let me know. I’d love to ask you some questions about these Facebook groups and current doctors and treatment options.  I’m not positive what I have going on but I’m quite certain my left eustacian tube is the problem or is at least being affected by a causal problem. Please let me know if you receive this message. 
    • aaron_78693
      aaron_78693 Casey1337

      Posted

      Hi Casey - sorry I caught this by chance as I no longer follow this thread but it turned up as I was clearing out my SPAM emails. Please email me on and you can ask anything you like! 

      Kind Regards,

      Aaron

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

  • marina93718
    marina93718 jennybean17

    Posted

    Hello, Aaron. I live in Russia. I suffer Patulous Eustachian Tubes for 7 months, since the beginning of pregnancy (this is my first pregnancy). unfortunately, this disease does not allow me to enjoy the pregnancy, I got the strongest stress, as they do not know whether it will end after childbirth or not. I was very worried about the future, and how I can work with this disease. it is hard for me. the child is suffering, because of the stress I strongly increased blood pressure. in the Russian Internet is very little information on this issue, but a lot of sufferers. I joined a special group, but they have a lot of negative people only "cry" and can't find help. the last time try Google English-speaking Internet, but have difficulty because of the language you know is bad and use automated translator. I read Your post and as I understand it, You know cases of cure. this is very important information for me, because I was desperate and in need of positive information. Please share information you own. how these people were able to recover what they did? maybe there are useful recommendations? have You ever come across information about atom disease in pregnant women? maybe you have contacts or links to articles on the Internet. we in Moscow are doing the operation (pump Teflon paste), but I was warned that it's pretty risky. hope You understand my broken language and I can help. thank you for any information. thank you.
    • aaron_78693
      aaron_78693 marina93718

      Posted

      Hello Marina,

      I am sorry to hear about the stress and suffering you are experiencing. 

      I want to reassure you. I have read many cases of people who are pregnant and experience Patulous Eustachian Tube. In almost every case, their symptoms dissapeared after the pregnancy. So this is good news for you. I am sure it will go away after you have had your child so please do not worry :-).

      The reason for this is because one cause of Patulous Eustachian Tubes is both rapid weight gain/weight loss. So in your case it is weight gain. After you return to your normal weight returns - you are likely to be fine

      Another reason is due to hormone imbalance. Again I expect pregnancy to be a cause of this. So once your preganancy is over - you are likely to be fine.

      For the reasons above - do NOT seek surgery. If your symptoms continue after childbirth (give it a few months I'd say) then I would seek treatment. There are many available worldwide to help alleivate some of them and I am happy to help.

      So overall - do not worry :-) you should be fine! Please do not stress anymore for the wellbeing of your unborn child. 

      For your information this article explains it for you http://emedicine.medscape.com/article/858909-treatment

      It says "Patients are symptom free after preganacy" :-) so DO NOT WORRY!

      Hope that helps. 

      Aaron

    • marina93718
      marina93718 aaron_78693

      Posted

      Oh, Aaron, I'm so grateful that You responded and gave me hope. Because the last time all that keeps me afloat this faith and hope, and prayer. I am glad to hear that there are such cases. Read the article and surprised that the weight gain may also cause. I really don't understand, it's some mysterious disease. Many people have different reasons, but the same results. During the year before pregnancy I was very sick with ear infections, so when he had a Patulous Eustachian Tubes I had not thought of pregnancy and thought it was the consequences of otitis media. In addition, before pregnancy for family reasons was stress and I heard from ENT that this can lead to thinning mucous and fat loss in the anatomical region of the nose and the auditory tube. Anyway, I hope that out there, and Your letter of confirmation, thank You very much. By the way, if someone is going to help the guys from the community "autophone" find a way of temporary relief - buried nose, so to hit the pipe ascorbic acid solution. It seems the effect is reminiscent of the effect drops from Santa Barbara. Thanks again!

      Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • jenny16777
      jenny16777 marina93718

      Posted

      Hi marina I see this post is old but I'm currently pregant and are experiencing the same thing did your goes away after you gave birth? I'm so worried and stressed over this I been having this for 7 months already any advise?

  • ktdear
    ktdear jennybean17

    Posted

    Hello,

    I was diagnosed with and had patulous eustachian tubes from age 13 on after having several sets of tubes placed through out my childhood. I was told that the only way to correct this issue were steroidal shots directly in my ear canal, and after researching did not go through with this procedure. 

    Three years ago (age 22) I was taking prednisone for fluid in my inner ears after a sinus infection. It was a stubborn infection and my ears would not drain so I ended up taking two bouts of prednisone in succession. This fixed my patulous eardrums (miraculously??) and they have been functioning normally since! I still get ear infections easily and have very thin eardrums but my life is much improved now that my eustachian tubes are not constantly open - the walls of my eardrums used to flex from convex to concave with each breath 90% of the time, and it was not debilitating but was very annoying and frequently painful.

    Anyhow - I was prescribed the prednisone to fix something else but am sure that it also helped fix my patulous eustachian tubes.  I am not sure if docs anywhere are prescribing or proposing this as a solution, or if it has worked for anyone else, but you might think about it if nothing else has worked!

    Good luck, 

    Katie

     

    • theburner
      theburner ktdear

      Posted

      Hi ktdear, I was wondering if you used to have clicking when opening and closing your mouth. I don't have autophony 24/7 but the clicking of the E-tubes is really annoying and the pressure in my head never seems to equalize. 

      Lately, I've been trying to gain weight but I think I might add prednisone to my routine. I've tried prednisone before when I was sick and it didn't have any effect on my E-tubes but it might be a good idea combined with weight gain, as it also makes you more hungry.

  • theburner
    theburner jennybean17

    Posted

    Hey, I was seeing how you are doing. Have you had any improvement in your patulous symptoms? 
  • teresa97191
    teresa97191 jennybean17

    Posted

    Hi Jenny. I'm having similar issues after attending a night club. Could you give us an update on your condition please?

    Thanks much

  • Poppy321
    Poppy321 jennybean17

    Posted

    Hi Jenny,

    Just wondering how you are these days and if you've seen any improvement? I have very similar symptoms to yourself which also began after a loud concert.

    Specifically I have:

    A hissing Tinnitus sound, I believe in both ears

    "- Both ears 'crackle' when swallowing. Some relief offered after yawning as first swallow is sometimes not affected." I have this exactly. The sound to me is like bath bubbles popping in my ears.

    - Feeling of pressure

    - Able to pick up a lot of noises I previously wasn't able to hear/tune in to. Crashing plates etc hurt.

    I've had these symptoms for the last 3 months with no improvement and little assistance from my GP. If you could let me know if you know of any possible remedies I'd be really thankful.

    Thanks

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