Eustachian Tube Dysfunction Cure
Posted , 60 users are following.
As far as I know, there is not ETD cure, yet. I am interested in finding one. I am a Caucasian 34 year old man living in Santa Clara, CA. I have a BA in Psychology and work in a Neuroscience Lab. I was diagnosed with ETD a year ago. I have been suffering from it for 17 years. 13 years ago I had a bought of Bulimia that lasted for about a year. I had Anorexia Nervosa as an adolescent. I was given the maximum dose of testosterone to boost me through puberty since Anorexia was preventing it. Soon after I abused alcohol, marijuana, tobacco, and various other drugs until 2005. I believe all these factors have contributed to my ETD. I was diagnosed with OCD and Generalized Anxiety Disorder two years ago and have been taking Effexor (Venlafaxine) to cope. An Ear, Nose, Throat doctor (currently called Head and Neck surgeon in US) prescribed me Flunisolide (coritcosteroid) to reduce ETD inflammation. It seems to help a little, but it is certainly not a cure, even when used for a significant period of time (i.e. 3 weeks).
My ETD has been recently aggravated by my attempts to remove pimples and skin tags, which may be a symptom of OCD. Has anyone else experienced this situation? Numerous doctors say there is no connection between the skin abrasions and ETD, but they obviously don't have ETD.
Primarily, I am asking for information regarding ETD. I need to know the statistics of ETD so that I can develop a valid research proposal. Health organizations neglect to respond to my questions. It seems that most biological research is involved in diseases such as cancer and heart disease, which is great. But, as I am sure that anyone reading this knows, Eustachian Tube Dysfunction is a debilitating disease that hinders one's ability to live to their fullest potential. As I have recently graduated with a Bachelors degree. I am researching what my next step will be. I am strongly leaning towards statistics and data mining, since that is a much needed position in all research fields.
I am looking for information on the number of people with ETD worldwide and specific to certain regions. A timeline of ETD cases in these regions. Research groups, Academic and Professional, that are researching ETD. Research groups that are investigating ETD from the Neuroscience and/or Ear, Nose, Throat (Head and Neck surgery) perspective. Any other information is helpful as well, especially your own personal accounts of ETD. Please share your history, as much as you care to disclose, so that I can begin to develop an etiology of ETD.
I have read many of the other discussions on ETD and recognize that many of you are suffering and I certainly empathize with you all. I am still trying to decide if my anxiety disorders are the result of ETD, my ETD the result of my anxiety disorders, if they are mutually intertwined, and/or if something else is going on. I very much hope to hear from you so that we may begin to develop a cure for ETD so that we may not be hindered by this ruthless malfunction.
1 like, 209 replies
xminh2329x Tympanic
Posted
Well, let's start with what works for me. I'll put it on a list from 1-3 to make it easier to follow along:
1. Gluten/diary free diet seems to work for me (food allegy can cause inflammation in the middle ear? I also notice my sinus problems goes away completely too).
2. Avoiding over heating oils when cooking (gives me worst symptoms, it's damn near unbearable. I would experience super tightening of my eustachian tube or ear drum, and constant tightness and clicking of the ear).
3. Meditation (helps redirect my focus away from my ETD symptoms and stay in the moment with other people, otherwise, I'm at the mercy of my ETD and would not be capable of socializing like a normal human being. For some reason I'm unable to maintain eye contact nor process social interactions when the left side of my face is full and pressurized, and my eustachian tube's tight. It almost feels like I temporary turn autistic. It sucks
).
4. When my blood sugar levels are in balance, my symptoms of ETD has very little effect on me. So it's important to eat periodically to keep my energy level up.
Here is what I noticed about my particular ETD experience.
When my ear is fully relaxed and opened, my restless leg syndrom and anxiety completely subsides. When it's tighten, my RLS and anxiety levels instantly comes back. So my take on it is, ETD causes anxiety. Not exactly sure, but maybe the middle ear puts pressure on certain nerves or blood vessels of the brain, particularly in the amygdala region of the brain, and somehow makes it difficult to process social interactions properly, thus causes a load of anxiety? I don't know, but I'm quite charismatic when there is no pressure on the left side of my head, and socially retarded when it's full.
Also, I think that there are nerves on our face/head area that is directly connected to our limps. When one of them gets pressed on by pressure inside the ear, it sends false signals to that part of the limb it's connected to? I dont know. Look up phantom limbs on people who have gotten their limbs amputated. They're able to feel sensations from these amputated limbs by touching certain area on their face.
My hypothesis on what's going on with our eustachian tubes (It's 6AM here and I've yet to sleep, so some of the stuff I write might not make the greatest of sense):
For some people, the main cause of their ETD experience is from scarred tissue on their tubes, making them inflexible to carry out their normal functions. For me, and probably a manority of others, it's inflammation of the area around the tubes. My guess is, somehow a group of bacteria, yeast, or fungi have made it's way into your middle ear and have colonize it. Certain food may feed these colonies of bacteria ir mold or whatever, and their activities causes the middle ear and everything around it to inflame, causing our ETD experience. Otherwise, what would explain why ETD happens on only one ear and not the other (at least for most of us)? Why is it when the eustachian tube gets inflamed, it's only on one side? So it's not an issue of an allergic reaction to certain types of food, but rather one side of the ear is being colonized by a mold or bacteria of some sort causing this inflammation to take place, otherwise, both eustachian tubes would be inflammed.
Also, I've never have had this happen before until I got an ear infection in my left ear. It got worst after I got a surgery repairing my left ear drum. It could be the massive dose of antibiotics that I took after surgery. Antibiotics supposedly kill off the good bacteria in ur body (the ones that keeps the fungi/mold in your body in check), thus allowing fungi/mold to thrive. Anyway. That's just my guess.
xminh2329x
Posted
It's also important to avoid overheating your oils when cooking. I try to avoid eating fried food when I'm out at a restuarant since they often carelessly over heat their oils or reuse old oils from the day before. My ETD flares up everytime I break this rule, so give it a shot and see if it works for you.
And don't forget to meditate daily. If you've never practiced meditation before, you're missing out on probably the single most important practice you can do for yourself in life. Pick up a meditation guide and start practicing them daily. Do not skip days! You need to do at least 20-30 minutss of meditation everyday to keep in tip top mental shape. You'll be rewarded handsomely for your efforts, trust me. Try it for 6 months straight.
Last but not least, eat a well, balanced diet every 2.5-3 hours or so. This will keep up ur energy level. Drink plenty of water. I find that drinking lemon + honey water in the morning subside the morning ETD symptoms some of you were talking about. I usually make this drink the first thing in the morning follow by 20-30 minutes of meditation. I then head straight to the gym for some exercise. Btw, it's important to drink the lemon/honey water at room temperature. Hot water denatures the vitamin c in the lemon.
Ps: Stay positive. To put things into perspective, if a guy without limbs is able to thrive and be happy in this world, I think we can to. Negativity will only make ur ETD experience worst, so do yourself a favor and kick the habit.
xminh2329x
Posted
annamay123456 xminh2329x
Posted
Are you still active on this site xminh?
Keen to hear how you're doing after a year??
Olizzieo Tympanic
Posted
Tympanic Olizzieo
Posted
About a month ago I got a second opinion form another Head and Neck Surgeon at Kaiser Santa Clara, CA. She says I do not have ETD or PET. She agrees with what I suspecte, that it is a musculoskeletal problem at the core. A physical therapist has given me instructions to do exercises that strengthen the "inner neck" muscles, as opposed to outer. I still feel the need to do the Politzer maneuver to relieve pressure from time to time. The tube I got in and out within a week seemed a little helpful, although was not treating the root cause. The hearing of breathing/pulsating only occured with the tube in. Within a couple days of receiving the tube, I could feel that my tympanic membrane was trying to heal and did not want the foreign tube there.
Now that my most recent diagnosis is not ETD, I feel like somewhat of an imposter on this thread that I started. Although, I continue to seek a cure for ETD and its expansive associated etiologies. My interests and the current job market has led me to be in current pursuit of a Medical Lab Technician Cerficate and a graduate degree in neuroscience and/or biomedical engineering. Regarding the physical therapist exercises, I do feel like they are helpful. The theory is that by strengthening the inner neck muscles, I will have less ETD type symptoms. It does make sense.
My father had been diagnosed with bone spurs in his neck and was told he needed surgery. He started to ingest more oils with omega fatty-acids, such as flax and fish. His symptoms went away and did not need surgery. So I have been taking a couple tablespoons of flax oil a day and have been feeling a little better.
Also, as it is becoming more and more imperative that I get a source of income and I desire it to be from a field of interest, such as graduate/professional research and development, urgency and survival are powerful temporary cures.
Regarding your questions about my symptoms. It really does feel like muscle inflammation. I get a quick muscle spasm on either side of my neck/face and or chest, especially when I feel a sort of "wave of anxiety." My condition is certainly complex, which is evident in my education and professional pursuits of neuroscience, psychology, and medical technology. I don't have any hearing loss or any type of physical sign of disease, such as infection/fluid build-up. All my tympanostomy tests are normal.
Thanks for your post. Please let me know of further comments and questions. I do hope people still utilize this thread and site to give and receive helpful information for their conditions.
Olizzieo Tympanic
Posted
maureen05275 Olizzieo
Posted
It is 9 months later but I thought I'd ask as you seem so knowledgeable. I believe I have a patulous eustachian tube - autophony of voice and breathing, relieved by lying down and also by pressing the side of my neck which, only today, I have discovered is probably because I have been pressing on the jugular vein. I have Sjogren's Syndrome. Have you come across such a connection before? Do you have any suggestions? The fullness has now become pressure and pain. The last ENT was less than helpful (June or Jul 2015).
Olizzieo maureen05275
Posted
Hi Maureen. I have quickly looked up Sjorgren's syndrome and it makes send that you suffer eustachian tube problems due to dryness of the mucous membranes. It definitely sounds like patulous eustachian tubes PET!!! What country and city do you live in? There are few ENT's that have experience treating PET. If you can email a few ENTs in your area, ask them if they know of an ENT that specialises in eustachian tube dysfunction in adults, particularly PET. They may insert grommets, which can help some sufferers, or insert trans-tympanic catheters, which seems to have good success. Google the trans-tympanic catheters as I found the research interesting!!! If you can find an ENT that performs this, I think it would be your best bet. Please let me know how you go. This is still all so new!!!xxxx
maureen05275 Olizzieo
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Olizzieo maureen05275
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Hi Maureen, I am in Perth WA. I will ask the PET specialist here, who he would recommend in Melbourne. Will get back to you ASAP as you definitely need the best!!! xxx
maureen05275 Olizzieo
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Oh thank you, thank you. xxx
Olizzieo maureen05275
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Hi Maureen, he doesn't know of anyone in Melbourne. Are you able to phone ASOHNS - The Australian Society of Otolaryngology Head and Neck Surgery' and ask them if they know of anyone? You could also try phoning some of the bigger ENT/Otolaryngologist practices from the Yellow Pages, in Melbourne. One of them should be able to direct you to the right person. xx
maureen05275 Olizzieo
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maureen05275 Olizzieo
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Hi Olizzieo, I am just using this place to contact you to ask you what tests should be done by an audiologist to test for patulous eustachian tube. I have had audiology tests done recently but there was no specific test done for this condition. I had a Type A result and asked wouldn't that be the case if the eustachian tube was normal or if if was patulous. The audiologist was very definite in saying that it wasn't patulous but very vague as to why, said she would have observed 'respiration' when doing the typanometry but I thought there are other tests that can, should be done, looking at movements of the ear drum (?) to diagnose definitely if the tube is permanently open or not. I contacted another audiology place who emailed me back to say yes, they did do tests for patulous eustachian tube but I am now very unsure and don't want to be spending yet more money on inadequate testing. I would appreciate your advice on this. Thank you. Maureen
Olizzieo maureen05275
Posted
Hi Maureen. Just looking at the ear doesn't tell you if the ear is patulous and the audiologist should not have, and does not have the medical expertise to diagnose a patulous eustachian tube. Only a specialised ENT can do this. We regularly see people that look like they don't have a patulous eustachian tube when we look in their ear and observe respiration, but when we test them we find they do.'Use of Middle Ear Immittance Testing in the Evaluation of Patulous Eustachian Tube' is a research paper you can Google and give to a different audiologist!!!! Unfortunately I am not legally able to share my protocol for testing PET and unless an audiologist set a protocol up themselves, they wouldn't know how to run the test the same way. If you can download a copy of this article and give it to an audiologist, you can ask them if they can perform this test for you. The outcome is the same as the one I perform.
Henry DF, DiBartolomeo JR.
J Am Acad Audiol. 1993 Jan;4(1):53-7.
"Patulous eustachian tube identification using tympanometry."
Type A tympanograms are what I have found with clients that have PET. When you phone the audiology clinic, ask what test they perform. It would be great to find an audiologist in the eastern states, that definitely does this test and performs it fairly regularly so they know what is real and what is artefact. Please let me know how you go, or come to Perth for a weekend and I can perform the test myself lol!! xx
maureen05275 Olizzieo
Posted
Olizzieo, thank you so much for your reply. For some reason Patient has stopped sending me emails so I did not realize you had replied. This morning I went into the general Patulous Eustachian Tube forum, clicked on members, found your name, clicked on that and your replies came up and that is how I came to find this answer! I just thought you had decided it was something to which you did not want to reply!
I will look up and print out these articles and speak to the new Audiology clinic before I make an appointment. The last audiologist, a TTTS expert, had virtually decided that that was my problem and from what she said, I cancelled the appointment I had made with the neurontologist last week. In a following telephone call, where she felt she needed to clarify things before she wrote and emailed her report to me, she said she now thought I should see the neurontologist because of the unilateral nature of my symptoms which is not consistent with TTTS. Having seen an ENT's audiologist 20 months ago and this one recently and neither doing the patulous eustachian tube test although the symptoms I describe seem really consistent with this diagnosis to me, I feel somewhat defeated.. Thank you for your help. I wish I lived in Perth rather than Melbourne and could come to see you. xx
Olizzieo maureen05275
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maureen05275 Olizzieo
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Hello Olizzieo
I have contacted an audiology clinic that I think may be able to give me the correct testing for a patulous eustachian tube. This is what they have emailed to me: "Our testing for patulous Eustachian tube function involves a tympanometry machine very much like what your audiologist used at your hearing test. We record a tympanogram from your ear, and then several subsequent tympanograms to record the effects of several manoeuvres designed to open and shut your Eustachian tubes. We should be able to "see" your middle ears inflating and deflating with each manoeuvre- otherwise there may be an issue with a patulous Eustachian tube and potentially explain your autophony." Does this sound like the correct way to go to diagnose a patulous eustachian tube? I would be grateful for your advice before I make the appointment.
Thank you for all your help to this point.
Maureen xx
mike2090 Olizzieo
Posted
Hi ... I've been reading this community thread with great interest. I'm in Sydney and have just had P.E.T formally diagnosed after 6 months of frustration. Are you able to advise the name of your specialist in Perth ... as I'm on a bit of a merry-go-round with the so-called ENT gurus here in Sydney. I'm now obviously keen to start exploring and trialing different treatment options.
Many thanks for any help you can offer.
maureen05275 mike2090
Posted
Hello Mike. I am not Olizzieo but I am going to reply to you as Olizzieo has not posted anything for about four months. I have PET also, with symptoms present all the time in my left ear except when lying down. I have known that I had it for two years but got the usual run around and managed an official diagnosis only this past April. I am in Melbourne. The ENT I saw in April said there are a number of treatments tried which means that none of them really works and some of them are downright dangerous. My extensive research had already told me as much so I was not surprised. His suggestion was to put on weight. As I was only 6 kg lighter then, at 71, than I was at age 18 (58kg vs 64 kg) I was a bit sceptical. By chance a few weeks ago, however, I saw a brief piece on U-tube where an ENT said as little as 3 lbs (~1.4 kg) can made a difference. Also my right ear, not previously affected, displayed autophony about four times between Feb and April and he said this was because I had lost more weight over this time. Since I started to try to put on weight, the right ear has not been 'autophonic' (probably just made up a new word) so I am going to persist with the efforts at weight gain (difficult for me because of other health issues). Even though the autophony is awful and even though it has taken away my singing which was my one talent and real joy in life, I am very loathe to try any surgical procedure and risk being worse off. You might like to try Patulend, often spoken about but expensive and you would have to import it from overseas. I have seen that it has been of benefit to at least one person. If you come do across anything that helps you, please let us know.
Best of luck.
larissa25469 Olizzieo
Posted
hi olizzieo,
i am based in perth and believe i have developed patulous eustachian tube following double jaw surgery 10 weeks ago.
who is the ENT in perth you would reccommend for this?
please help!
maureen05275 larissa25469
Posted
Hello Larissa
I am the Maureen who wrote the bit above 16 months ago (live in Melbourne). Unfortunately I have not seen Olizzieo write anything for about 20 months. You could try what I tried, I think suggested by Olizzieo. I contacted the ASOHNS organisation. I don't know what the letters stand for but its members are ENTs specialising in various fields. I sent a website email query (ASOHNS.org.au) and the manager replied. Her email address was carolegridley@asohns.org.au. She sent to me a list of Victorian members which included their specialities and highlighted those who specialised in otology and neuro-otology. I did go to see one on the list, I think a very good specialist, but he was unable to do anything to help me. Nevertheless, you could try this avenue to find somebody good. Say in your email (website or directly to the manager) what your problem is. Good luck and please let me know how you get on. It is an awful thing to have to live with and difficult, as it is one of those hidden conditions that no one but a fellow sufferer understands.
With best wishes, Maureen