Pulsatile Tinnitus, Patulous Eustachian Tubes, Vibrations and Many Other Things...

Discussion in 'Support' started by Swampy, Apr 15, 2016.

    1. Swampy

      Swampy Member

      Location:
      Berkshire, United Kningdom
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      Hi everyone, this is my first post here. I have lurked on this website for a couple of years now, here and there, but decided it was time to make an account. I also want to apoligise, this post will probably be quite long, i hope that's okay. I also hope it's okay to talk about the ear conditions i am about to mention, some of them are tinnitus related, others are not, but i just wanted to see if anyone here could perhaps relate to some of the other things too. I look forward to talking with you all, and hope you are having a bright day :).

      Since i was young i have suffered with Patulous Eustachian Tubes, which means i have lots of air in my middle ear, and as a result suffer from autophony ( hearing my own voice and breathing very loud and echoey ). I used to sniff in to fix this as it would close the tube back up and suck the air in and i never thought anymore of it, as annoying as it was. Now about 2 or so years ago, randomly out of no-where i had tinnitus start up, when it first started i thought it was like the usual ring you get in your ear from time to time, only this one did not go. Not long after that i then developed Pulsatile Tinnitus in my right ear. It was around this time i did some research and found out names for all of the ear conditions i had. I found a great ENT specialist and booked in to see him.

      I learnt from seeing him, that i did indeed have Patulous Eustachian Tubes ( i was always told by doctors growing up it was Eustachian Tube Dysfunction ), although saying that, he did also say i do have a minor case of ETD too, although they are complete opposite things. He informed me my ears were very retracted due to all the sniffing i had done over the years and were in very bad shape, i also have one of the hearing bones missing in each ear. It was suggested i could have bio-plastique put into my tubes to help with the Patulous Eustachian Tube problem, but to see how i get on otherwise using ear drops that are meant to help close it. He also referred me for a CT scan with contrast dye in the mean time to try and see if we can find what's causing my Pulsatile Tinnitus.

      During the period in-between waiting to see him again i then also developed a very loud vibration sound. I hear this constantly, and it has got much worse over the last couple of years, it sounds like a truck engine has been placed inside my head and i can constantly feel and hear it all around my head/ears. It is very distressing and extremely loud, so that coupled with the pulsatile tinnitus made it very difficult to sleep at night. I also developed a horrible loud reaction noise on my right eardrum, it basically feels like it is being plunged in and out rapidly and has a loud air rush sound in it when it does this. Kinda similar to the sound of a metal sheet being rapidly bent in the air, if that makes any sense lol. It moves and reacts to the sounds of my voice, a light switch turning on or off, a fork or plate clanging, clapping or any type of high pitched sound. So, anyways, i got around to my next appointment, my scan results came back and apparently there was nothing on the scan to show what could be causing my Pulsatile Tinnitus. Which to me was both fantastic news but also worry, as i still want to find the cause. Although on the up side he did say my ears were looking a little better as i managed to stop sniffing in all the time, he said the fluid behind my eardrum looked to have drained a bit, which is great.

      Before my last visit to see him, this February just gone, i also developed a new problem in my left ear, that whenever i move my jaw, open or close, i will get a very loud air rush sound. I am used to air rushing sounds due to my PET, but this is very different, a lot louder than normal. I also have noticed i am losing my hearing more than usual in my right ear. I did mention this when i went to see him last, but unfortunately he had a look in my ears and informed me my right ear is in a very bad state. Apparently it is collecting dead skin on the eardrum, and because of the nature of my ears he is worried it will form a cholesteatoma so recommends i have mastoid surgery. He is a little worried to operate on me though as i have a lot of anxiety due to all my ear, and many other, health conditions, so i'm currently waiting to see another Doctor for a second opinion on whether he thinks i should have the Mastoid Surgery. This is currently where i am at, at the moment, although i have had another problem start up too. I also now get a loud clicking sound whenever i am breathing in or out in my right ear. So i still don't really know what is causing this Pulsatile Tinnitus, or Loud vibrations, or ear reaction sounds and movements ( could possibly be TTTS, but made worse due to the PET, although i have taken magnesium but this has not helped ), but i'm pushing through it all as hard as it is.

      Life is a wonderful thing and I am very grateful and blessed for every day i get, and just hope i can find some answers soon to try and help some of these ear things. :).

      Sorry for the mini essay, i just wanted to kind of let it all out.

      I want to also say a big thank you to everybody on here, as i have lurked on here before, and it is nice to sometimes feel like you are not so alone, as horrible as some of these things can be. So thank you everybody and i hope you are all having a great day/evening. :)
       
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    2. ChrisJ

      ChrisJ Member Benefactor

      Location:
      London, UK
      Tinnitus Since:
      PT since 1988. T with H since June 2015
      Cause of Tinnitus:
      Unknown
      I think there are many people in here with this condition. I have recently determined that this is what I have based on what others have said and going back through my notes. This is a helpful Wikipedia article on Patulous Eustachian Tube or PET.

      This condition explains the following symptoms I have seen mentioned here including my own:
      • Hyperacusis, including your own voice making your head hurt.
      • Autophonia, hearing your own voice in your head, sometimes feels like you have a bucket over your head. Some people say it comes on more during cardio exercise or heavy breathing.
      • Tinnitus can be caused by PET including pulsate and low pitched roaring sound.
      • Disrupted air pressure behind ear drum can interfere with hearing and acoustics including amplifying sounds.
      • Myofascial pain caused by pressure in the sinuses as a result of the Eustachian Tube being open intermittently.
      • Recurrent ear infections due to bacteria entering the middle ear via the opened Eustachian Tube
      • Clonazepam has been frequently mentioned on this forum as relieving symptoms, it is a muscle relaxant and the Eustachian Tube is made of mucsles.
      • Being able to change the tinnitus by twisting the head side to side. This stretches the muscles in the Eustachian Tube and the connecting tissues.
      • It's a difficult condition to diagnose with some patients being told it's psychological (I think we all know what that's like).
      • Usually Audiologists make the diagnosis and not ENTs (from the wikipedia article).
      There is an interesting book The Heart of Listening by a guy called Hugh Milne. I will try and scan the pages from the middle of the book when I get a chance and show it on here.

      cc @Mike K @Marie79 @Natalie Roberts << you might find this thread interesting.
       
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    3. Natalie Roberts
      Haunting

      Natalie Roberts Member Benefactor

      Location:
      USA
      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Pregnancy or mild hearing loss.. Who knows.
      @ChrisJ thank you! I go to see a new ENT next week and will ask about this. I also have an appointment tomorrow for a new hearing test with audiologist and will mention this as I suffer from pressure changes and some of the other things you mentioned
       
      • Like Like x 1
    4. Natalie Roberts
      Haunting

      Natalie Roberts Member Benefactor

      Location:
      USA
      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Pregnancy or mild hearing loss.. Who knows.
      Also, @ChrisJ I found it interesting that it says it can develop during pregnancy which is when mine started and can be exaggerated by anxiety which I also suffer from. In reading about it though, it seems kind of depressing because the treatment options don't seem great. It does say if anxiety is the cause cutting caffeine and taking a GABA blocker may provide relief though. I suffer from a great deal of anxiety usually so who knows . A lot of these symptoms match mine except the change from lying down or tilting my head, congestion issues, facial pressure, and ear infections because I don't have those issues. Nonetheless, worth mentioning . thanks so much
       
    5. ChrisJ

      ChrisJ Member Benefactor

      Location:
      London, UK
      Tinnitus Since:
      PT since 1988. T with H since June 2015
      Cause of Tinnitus:
      Unknown
      You don't have to have all of them, I think the condition can range from mild to severe. I had mine for 20 years and had no idea it was a medical problem. It was only when the symptoms got a lot worse. The main thing is whether your E Tube is opening up more than it should and air is getting in to your ear.

      If you search around the web it looks like there are a range of treatment options from Yoga stretches through to collagen injections, I even saw one recommendation of putting on weight to pad out the tissue around the E Tube! I think it's one of those conditions that is tricky to cure but easy to manage with symptoms waxing and waning.
       
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    6. Natalie Roberts
      Haunting

      Natalie Roberts Member Benefactor

      Location:
      USA
      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Pregnancy or mild hearing loss.. Who knows.
      Did you get diagnosed with this? Yes. My symptoms wax and wain. Some days I have zero problems except minor tinnitus ranging to days when it is most severe especially the hyperacusis and reactive tinnitus. Today for example my voice is driving me crazy. I did loose a lot of weight when I was pregnant (or didn't gain, rather) due to anxiety issues but have since put on weight and at 5'1 weigh about 130 so considered healthy, if not slightly overweight . My sensitivity also ranges by the hour and will be really bad in the morning but get better by the afternoon and worsen in the evening although I can go days without severe hyperacusis / voice bothering me. I hope my audiologist will take me seriously tomorrow. These symptoms and descriptions seem very similar to mine .
       
    7. ChrisJ

      ChrisJ Member Benefactor

      Location:
      London, UK
      Tinnitus Since:
      PT since 1988. T with H since June 2015
      Cause of Tinnitus:
      Unknown
      How did you get on?

      I finally got my Patulous Eustachian Tube diagnosis confirmed. This was after some time of doctors writing to each other debating whether I had it based on case history; eventually my GP just sent me to an ENT and after asking about my symptoms and running a standard hearing test he took me in to a room with a large microscope and took a look inside. Next he asked me to pop my ears using the valsalva maneuver to trigger my symptoms and then just breath normally.

      Labomed Prima ENT Microscope Demo - English

      Promo video for said large microscope

      After a few moments he asked me to describe what I was feeling and I said my voice was very loud in my head and I could also hear my breath.

      He checked both ears and said unequivocally that I had Patulous Eustachian Tube or PET. My ear drums were moving 'considerably' he said and for an extended period of time, long after the tubes should have closed up.

      He is going to write to Dr Ian Bottrill at John Radcliffe Hospital in Oxford who is an expert on Eustachian Tube disorders. I sought him out after finding this website: http://www.patulouseustachiantube.net/

      The ENT guy was really nice and spent a lot of time with me. He said that in his opinion the PET diagnosis would probably not cause my intractable headpain but rather there could be a concert of issues going on on the left side of my head which are impacting on one another.

      Treatments you can try for PET are:
      • Putting on weight especially if you lost weight running up to the onset or worsening of symptoms.
      • Saline Nasal Spray (often sold for babies, it's harmless). Just spray it up your nose when your ears pop.
      • Putting your head between your knees or laying down when your ears pop
      • I even saw one suggestion of spraying fruit juice up your nose as apparently the acidity contracts the tube to make it close - don't try that at home kids! At least until I have researched it more.
      I have been told that treatments for this condition are not very good and can sometimes make them worse. As I make progress I will report back to this thread.

      One last thing on PET, Hyperacusis and Retracted ear drums:

      The way that PET can cause hyperacusis even when the ears are not popped is to do with the compensatory behaviour suffers engage in, namely sniffing a lot to try and pull the ear drum back in to place and close the tube. Doing this or a negative valsalva can cause the ear drums to be retracted all of the time, stretching the ear drum, increasing its surface area and making you more sensitive to sound. Retracted ear drums can lead to other problems also.
       
      • Informative Informative x 3
    8. Kazue

      Kazue Member

      Location:
      USA
      Tinnitus Since:
      09/19/2016
      Cause of Tinnitus:
      Unknown
      I think @Coyotesheaven experienced this as well. Maybe they can provide some insight. :)
       
    9. Coyotesheaven
      Depressed

      Coyotesheaven Member

      Location:
      Utah
      Tinnitus Since:
      02/18/2015
      Cause of Tinnitus:
      Multiple
      @ChrisJ
      I have some of these similar issues as well. Self- diagnosed with eustachian tube dysfunction (ENT's too dumb to realize this), but that does not appear to be the whole story. The other half of the story involves blood vessel spasms in my inner ear or something off with my intracranial pressure, or something wrong with my middle ear muscle. My doctors have lead me to dead ends over and over again (while poisoning me with meds!), so who really knows what is going on.
      I'm not sure if I have PET's, because my voice and internal noises are not amplified in any way. But I do suspect something is really wrong with my eustachian tube function. When I swallow, yawn, or open my jaw to lightly pop my ears, my ears often have an explosive force carried through them and there is this really loud noise. On occasion, I also get a *ping* sound in my ears, and it feels like my eardrums move. My eardrums are not retracted, according to what my ENT says, but who knows how well he was looking?
      I have to be really careful about swallowing or opening my jaw too wide, eating food, etc because the explosive popping seems to lead to hearing loss and the low-pitched tinnitus, even vertigo. Not fun.

      @Swampy
      My low-pitched tinnitus also appears to be pulsatile in nature. Like yours it sounds like a truck engine, or water flowing through pipes, but if looked at carefully its intensity is synced with my pulse. I also have a rapidly developing low frequency hearing loss accompanying this tinnitus (can't hear much below 100 hz at all). The hyperacusis can appear to be a physical reaction, like I had a muscle spasm in my inner ear or something. I additionally have 'hyeperacusis', and can't stand mid-high frequency noises whatsoever; but it almost seems like noises around 70 db or higher actually set off a migraine-like reaction, meaning that it is not just hyperacusis. Again, nobody has explained any of these problems other than that they may be migraine related, and possibly related to the muscle tension in my neck and jaws.
       
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    10. japongus

      japongus Member

      Tinnitus Since:
      1998
      So much for pathways in the dorsal cochlear nucleus and the limbic system. Know anyone with confirmed retracted eardrum plus hyperacusis to external sounds that was subsequently cured by solving the patulous issue? What sensations of discomfort did they have?

      What about eardrum stretching without retraction, could that be possible...
       
    11. JurgenG
      Approved

      JurgenG Member Benefactor Advocate

      Location:
      Belgium
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Loud noise exposure / headphone accident maybe?
      I hear my voice louder in my ear these days, been wondering if it might be PET? I don't hear my breathing too loud though. I guess it's also more of a vibrating issue, maybe it's because I have a bit of a cold?
      Could your voice be damaging with PET?
       
    12. leah farr

      leah farr Member

      Tinnitus Since:
      2 months
      Cause of Tinnitus:
      Blocked ears
      Hello everyone! I have been on this forum for over 12 months now, i have spoken to some amazing people who have realy helped me, after a long battle with doctors and consultants i have been diagnosed with PET, i have been offered the operation were they pack the ear to try and help things, i refused the operation as i understand it can make things worse, i also have bad throat infections and i am booked into having an operation to have them removed, however i am terrified that the operation will make my tinnitus worse, i have learnt to cope with volume it is at the moment, i feel like i am stuck between the devil and the deep blue sea, has anyone had their tonsilis removed and their tinnitus has become unbearable?
       
    13. RubyKP

      RubyKP Member

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      PET
      I was dealing with PET a couple of years ago, and it was so discouraging, as it seemed like there was no viable resolution in sight. Mine had developed for no apparent reason. . .Anyway, after dealing with it for months, I decided to switch my morning cup of coffee to decaf. I had read that you should try cutting out caffeine, but thought that one cup wouldn't make a difference. I WAS WRONG! I found that if I stick mostly to decaf and stay well hydrated, then the PET doesn't bother me at all. I am so thankful to God that it was such an easy solution for me. . .I hope it might help some of you!
       
    14. SarahStacey

      SarahStacey Member

      Tinnitus Since:
      August
      Cause of Tinnitus:
      Unknown
      This sounds like what I have except no one has made the diagnosis. I had an upper respiratory infection last year and after that, I developed headaches and ear pain in my left ear. The headaches literally felt like they were in my ear. My ear also pops randomly, flutters, I have tinnitus. I have also developed hyperacusis which is more predominant in my left ear but also subtly in my right. After I speak, it's like there is a mild thump/vibration/crackle. When I am still, I can feel a thumping in my ear. If I talk a lot and fast or exert myself, I get dizzier. There is also a constant vibration in the background, almost like the background sound one hears on a plane.

      I am wondering if this is what I could have. The tympanometry have always been normal. I was did the vestibular testing which was normal...
       
    15. AUTHOR
      AUTHOR
      Swampy

      Swampy Member

      Location:
      Berkshire, United Kningdom
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      Hi everyone. So sorry I haven't been on this forum for ages! Just wanted to say I hope you're all doing well. I know for PET there are options such as a bio-plastique injection which has been offered to me, but I haven't taken that route yet as it can cause a permanent head pressure and other issues and as I have quite a few ear issues going on at once I'm a bit reluctant to make the jump for this yet incase it makes anything worse. If any of you are still struggling for a diagnosis try and have a search for any ent specialists who are knowledgeable about PET. I believe there was (or at least used to be) a Facebook group that has a file with a list of ENT specialists who would be good to see to get a diagnosis and discuss any possible options.

      I had my surgery last year to remove the cholesteatoma I have had growing and all is well from that surgery other than the fact that the air from my PET in my right ear now travels up to a pouch I have from surgery instead of pushing so much against my eardrum.. It's really strange so I still have the autophony on that side with the PET but it's now also in this pouch area too as I can physically feel it there, which is just above my ear, so I kind of hear any movements when I move my head (like hair moving) a bit echoey, and when I touch the pouch area I can feel all the air there it's a very strange feeling, but as soon as I sniff in to fix my PET and close the tubes (which you should not do) the pouch area feels normal to touch, no weird feeling when touching it as there's no longer any air there. My left ear still has the PET as usual but for the last month or so seems to keep spasming and thumping after a hiccup or yawn or burp and can last for days, I'm wondering if this is possibly TTTS.

      Anyway, I wish you guys all the best with everything and thanks to you all for the information that's been posted above. I think the more we speak about PET the better. All the best :)
       
    16. BlackSwanNSW

      BlackSwanNSW Member

      Tinnitus Since:
      02/2018
      Cause of Tinnitus:
      Ear infection from with otitis media and/or blowing nose.
      Any update guys?
       
    17. dingaling
      Relaxed

      dingaling Member

      Location:
      London UK
      Tinnitus Since:
      2016
      Cause of Tinnitus:
      unknown, probably loud music
      @Swampy

      Glad you got some of your issues sorted. I seem to remember in your opening thread about having one of the middle ear bones missing. Was this the same ear with the cholesteotoma? After your mastoid surgery, did you have an ossiculoplasty done to replace the missing middle ear bone?

      What might be of use to others is that when any of the middle ear ossicles are disrupted or missing, the acoustic reflex is lost meaning that sounds that would normally be damped down aren't. This means that many sounds will sound a lot louder than normal. This is regardless of whether you have a patulous ET or not
       
    18. Rafaa

      Rafaa Member

      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Who knows? I have Patulous ET and ETD + Other things
      So your pet + pulsatile T is gone now?
       
    19. AUTHOR
      AUTHOR
      Swampy

      Swampy Member

      Location:
      Berkshire, United Kningdom
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      Heya. The middle ear bones in my right ear (cholestestoma) were being eroded I believe. Not 100 percent sure which ones exactly or how bad they were. I'm sure I got told one of them had been completely eroded but I will need to triple check that when I see my specialist next. I know when he removed the cholesteatoma he also rebuilt my eardrum as most of that was eaten into as well. I believe he used cartilage from my outer ear to help rebuild the eardrum. I'm not actually sure what happened with the bones, but my hearing is actually a little better thay side now than it was before the operation, thankfully. I will definitely ask him what actually happened with the bones when I see him next, honestly sounds silly but I've never thought to ask as I have quite a few other things going on I never actually enquired what happened there lol. I'm assuming what was left is still there and sitting with the eardrum he regrafted, but can't be sure. Sorry I'm not of much help.

      That's interesting information, thank you.

      It's bizzare too as my right ear has had episodes of reacting to any sounds, even a light switch or a fork clanging, my eardrum would feel like it contracted in response. Sounded like when a metal sheet is bent in and out rapidly. This has come and gone several times over the years in my right ear, I believe possibly a form of Ttts maybe.

      Recently my left ear has been having issues with rapid thumping and popping, can last for days and it's usually (but not always) set off by a yawn or hiccup or burp. I've been told this is TTTS. It's very bizzare, sounds like when someone taps on a microphone in an amplifier rapidly, but also feels like something kicking on my eardrum. It seems it's the tympani muscle spasming. It's just bizzare as it feels different to the issue I had in my right ear when it reacted to sounds, but i was under the impression that was Ttts too.. So perhaps there are different forms of ttts. Damn the ears are so complex.

      I will definitely get back to you when I do find out about the middle ear bones and what happened there.
       
      • Helpful Helpful x 1
    20. kiel
      Depressed

      kiel Member

      Tinnitus Since:
      09/2009
      Cause of Tinnitus:
      Loud Headphones
      Hi guys. Just found this thread, as I'm a longtime sufferer of Patulous Eustachian Tube. I was wondering about the Saline Spray @ChrisJ mentioned. Would Afrin work? Also, I thought any kind of decongestants were bad for PET? Is this not the case? Just trying to find some more info on this condition, and anything that might be able to help.
       
    21. CalMark

      CalMark Member

      Tinnitus Since:
      06/2014
      Cause of Tinnitus:
      likely Patulous Eustachian Tube
      Chris, thank you so much for mentioning this! My doctors have been unsure of my diagnosis since this all began for me in 2014. I've been diagnosed with both Superior Semicircular Canal Dehiscence (confirmed by a CT scan and VEMP test), and Patulous Eustachian Tube. Fortunately, the neurosurgeon who dianosed me with SSCD advised against surgery because my jaw tension was inconsitent with what he would expect in a patient with the condition.

      The combination of the muscle tension and autophony has driven me a little crazy over the past four years, but at least it hasn't gotten worse. It's good to read that someone else has dealt with the muscle tension, though. I haven't read of that complaint anywhere before. Thank you.
       
    22. kiel
      Depressed

      kiel Member

      Tinnitus Since:
      09/2009
      Cause of Tinnitus:
      Loud Headphones
      Any updates here guys? My Patulous Eustachian Tube has gotten worse since a bad Ear infection, and I'm not sure what to do. :(

      I'm going to try a regular saline spray today to see what it does. This is ok, even though it's technically a decongestant?
       
      • Hug Hug x 1
    23. Proteo

      Proteo Member

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      Intense pressure in the inner-ear during infection
    24. monroeni
      Energetic

      monroeni Member

      Tinnitus Since:
      2000
      Cause of Tinnitus:
      PET
      I dealt with PET for a very long time. I finally got in to see a ENT, and within 10 minutes he found my Eustachian tube was wide open in one ear, confirming PET diagnosis. He prescribed estrogen drops (Premarin) which I will start this week. It's supposed to help develop the tissue around the opening to grow/close so it's not wide open all the time. Fingers crossed. If it doesn't make a difference after 2-3 months, I am determined to move forward with surgery in which they will inject gel/filler into the tissue to try and help close it.

      I did try PatulEND at one point (citrus nose spray). It burned a bit, and didn't seem to help much. It is a very frustrating condition. It has prevented me from singing (I am a musician), hindered my public speaking, and makes it difficult to run. I am eager to fix it.
       
      • Hug Hug x 1
    25. BlackSwanNSW

      BlackSwanNSW Member

      Tinnitus Since:
      02/2018
      Cause of Tinnitus:
      Ear infection from with otitis media and/or blowing nose.
      @monroeniwhy difficult to run?
       
    26. Mosaik
      Balanced

      Mosaik Member

      Tinnitus Since:
      12/2013
      Cause of Tinnitus:
      Acoustic trauma

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