Eustachian Tube issues for well over a year

Found an article on Patulous Eustachian Tube and it sounds a lot like the problems I’m experiencing.

https://en.m.wikipedia.org/wiki/Patulous_Eustachian_tube

Yep..ears stops up, thumping sounds, hearing own voice, my ENT said my etd has caused the bone in my ear to push forward..seems mine mostly acts up at night/early morning. I swear cheese sets it off..I saw online where you can take the side of your ears and pull them put like Dumbo and look up while opening and closing yr mouth wide. This does seem to help sometimes, not always but sometimes it really does seem to open them up..I also suffer with tinnitis..ugh..but...I just do what I can and accept what I cant..take care

Hello Phixion

First:  the lump in your throat sensation.  I experienced the same decades ago and, suffering from an autoimmune disease which can affect the throat, immediately thought the worst and became even more anxious than I already was.  Like you, I had tests which showed nothing sinister.  A wise older friend, who did not have my disease, told me he had had the same thing and that it was caused by stress.  His had never totally gone away.  Mine did but recurs occasionally now.  I can just ignore it but know it is telling me to take a deep breath or two (or twenty) (i.e. calm down).  You will find websites about it if you google something like "why do I feel like I have a lump in my throat'?

Second:  now I may be barking up the wrong tree but I thought it worth making this suggestion,  You said:  "Ear popping, causing me to hear my voice in my head. This seems to be pronounced when I exercise and I'm breathing heavily."  This is suggestive of patulous Eustachian tube (PET) where your Eustachian tube stays open rather than closed.  When this happens you hear your voice in your head, rather muffled, because you are hearing it both through your ear and through your Eustachian tube but not exactly at the same time.  I have this problem in my left ear and for me it is there all the time except when I am lying down and for about 50 mins after I get up in the morning but when doing a lot of research into this when it first happened to me I read several accounts of people who experienced it only with heavy exercise which makes you breathe heavily.  For me, it first appeared with singing, also something which makes you breathe more heavily.  If you think about it, heavy breathing causes more air to go up through the Eustachian tube which can dry it out and cause it to stay open.  Your Eustachian tube will still look healthy (and is).  This is rare enough that when I told my GP I had the problem I had to spell it for her and when she typed it in it did not come up on her software as should have happened.  It is not diagnosed by just looking at the tube (as your specialist did) and also I would imagine that you would not have been breathing heavily during this test and therefore quite likely the tube was behaving normally.  I was initially misdiagnosed by an ENT and two audiologists.  It was only when I found an audiologist who would do the correct testing (and this one told me she had never been asked to do this test before and had to practice using the equipment on people at her clinic before she tested me), that I got the right diagnosis.  The two ENTs I saw later both confirmed PET but the first, when looking in my ear, did not see the ear drum move (typical of PET) while the second did because he knew what to tell me to do while he was looking.  I am very long-winded (as you will have gathered) but I am saying that perhaps you should take this into consideration.  If this is your problem, you most certainly do not want to have anything done which will widen the tube or put a hole in your eardrum.  I cannot tolerate loud noises like clapping but do not know if this is connected.  Low loud noises cause a sort of vibration in that ear and sometimes I find myself putting a finger in the ear when I blow my nose.  As for treatment - I am told (live in Melbourne, Australia) nothing can be done and I do know that things tried in the past have proved dangerous or ineffective.  One ENT suggested I put on weight.  I did manage to put on a few kgs but it made no difference (I am within the normal weight range for my height).  If you have lost weight through those recent difficult times, you could try gaining some back.  At least one person using this forum was 'cured' of this by putting on weight and he was ecstatic!  If you google PET you will find a lot of information.

Have the MRI (I did at one point) to ease your anxiety but do not panic in the meantime.  I very much doubt that you have any major problem.  If I can help you with any other information, please do not hesitate to ask.  Best wishes Phixion.  I do hope things improve in your life.

Maureen

Hello Phixion

Thank you for the update and good to know you are on the right track.  The first of the helpful ENTs that I saw couldn't see the ear drum moving on respiration as does happen but diagnosed me conclusively with PET because the symptoms went away when I was lying down.  I don't know if you have read this anywhere but it appears to be because of venous congestion.  The same thing happens if you are bending over.  I have found a bit of relief when in a conversation by pressing a point on that side of my neck close to the jawbone.  Apparently I am pressing on the jugular vein, again causing venous congestion; the relief is short-lived relief but it can be helpful.

About the ear drum twitching - I don't feel this but the ear drum does move as you breathe (I hear myself breathing) because of the air pressure coming up the open Eustachian tube.  The last ENT I saw said this would not cause any damage and also that there was not an increased chance of infection.  I have had crackling - said by others on the forum to be movement of mucus.  Again, nothing to worry about.  Once I stopped worrying, I stopped noticing transitory things like popping and crackling.  I have a mild to moderate hearing loss but I am 73 years old so this is to be expected and the loss is much the same in both ears so not related to the PET.  I also have a mild case of hyperacusis (sensitivity to loud noises) and it got worse at the same time as the real PET started so may be related but I was also really stressed out at the time and at others times later and I have found that if I am not so stressed I can tolerate everyday loud noises much better (but still can't tolerate things like chainsaws that don't bother other people).  I have the generalised anxiety disorder - have had it for decades if not virtually a lifetime - and now take an anti-anxiety tablet at night before bed (equivalent of Xanax).  I find that I cannot sleep without it.  On the rare occasions that I forget to take it at the normal time, I realise later because my brain doesn't 'switch off'.  Getting a good sleep is very important to maintain well-being so if I am addicted I don't really care but you are young so I understand your concerns. 

Now - the Vitamin A.  Worth a try, yes, but be very, very careful!  Back in 2006 I was seeing a 'naturopath' who turned out to be a herbalist.  I ended up in hospital for two weeks with severe liver problems and came within a whisker of being put on the liver transplant list.  The gastroenterologist blamed the herbalist's concoction that I was taking but there was nothing in it that could have caused my symptoms.  I am very meticulous (was a science, predominantly biology, teacher) and keep records of what I take and a couple of years later (yes, that is years!) I realized that what I had had was a Vitamin A toxicity.  I was taking a high dose vitamin tablet plus cod liver oil tablets and when I added up the amounts of Vitamin A from all sources I was way, way, way above the recommended dose.  So look up the recommended dose and make sure you stay below it.  I still take a multivitamin tablet but no extra Vit A.  Weight loss may indeed be a factor for you.  Is 75 kg below a normal weight for your height?  If so, perhaps you could try to regain some of that weight.

PET is not something you want to have but knowing the cause of symptoms, and knowing they are largely benign even if pretty awful, can be a great relief.  One ENT told me that this is not as rare as one would think and that five of his ENT colleagues had the condition.  I thought, privately, that they would probably not be working if it was as persistent as mine but maybe they are made of stronger stuff than me!

Keep researching Phixion and if you find anything else helpful, I would be glad if you would share it with me.  It is good to be able to help one another.

Warm wishes, Maureen

Hi, I am sorry for your difficulties 

Below is a thread to a discussion for ETD. I am being able to control this ETD

by the method described. This is a temporary remedy which I use on daily basis .some days better than others. At least I have something that works. I upgraded to a better delivery system for the saline flush. You must follow the directions it’s important to have the saline reach the ear drum to work.

Practice will get you there as doctor Mandel states in his video. The first time the saline reached my eardrums I was worried but now I know that is the key .

https://patient.info/forums/profiles/william46306-1130054

Just got back from the Hospital, I didn't have the MRI as I don't want to have the dye, the specialist said I could have had the MRI without the dye but it's harder for them to diagnose.

She's said I likely have PET, due to my symptoms... She said I could have an operation where they put cartilage in the Eustachian Tube, or a gel/foam injected, but that can cause problems such as glue ear which would require grommets.

I've decided to leave it be for now, It is annoying as hell but I'm sure when I reach the end of my tether with it I will be more willing to go the surgery route. I'm also half hoping I will just wake up and not have it one day.

She isn't sure whether the eardrum fluttering and the sound loss at high volume is related, but probably so.

Hello again Phixion

Thank you for keeping us informed.  I very much doubt that the MRI would have shown anything so don't stress about not having it.

Three things people have written about that have helped them:  1) 'Caitcastle' - found a nasal spray IPRATROP BROMIDE (.03%) - she had instructions about how to best use this; I can send these to you if you wish; I have not tried it.  2) Patulend has been mentioned - useful to some, not to others and expensive; I think, again, that you have to learn how best to apply this to get good results.  3) 'Dreaming tree':  I am quoting what she wrote on this forum sometime late last year:  "I'm going to try to make this as short and to the point as I can. I suffered through patulous eustachian tube (right ear) for 20 years with the last few of them being an every day all day (while not lying down) nightmare. I had 3 (machine breathing for me) surgeries, the first 2 were unsuccessful leading me to my point here. If you want it fixed this is what you need. The 3rd surgery was to fill the eustachian tube with bone cement and was successful (thank god). Don't accept a tube in the eardrum, injections, acid scarring, like I did before the first 2 surgeries, it doesn't work. These were all completely useless. If you have serious PET/ETD get the tube filled with nothing other than bone cement or an equivalent."

Best of luck with whatever you try, Pixion, but I think it is a good decision to just live with it for the present.

Maureen

 

Hello again Phixion.  This is most of the comment about the Ipratropium Bromide (I copied it at the time to Word, hence my being able to paste it to you).   "Feb 2017:  [caitcastle HB User]

[Smile] Re: Constant left ear autophony - Looking for a cure

TREATMENT:  Read more": (From Maureen:  I deleted a website here as my reply would have been rejected by the moderators but it was to the healthboards forum).  "Nasal spray IPRATROPIUM BROMIDE (.03%) -

I was so afraid there was no treatment.  This so far has been a LIFE SAVER.  I don't think it was created as treatment for this specific condition in mind, but it works non-the-less.  PS Stay away from nasal sprays that are for decongestion (Ipratropium Bromide nasal spray is not a decongestant.)  This so far is the only thing that has helped my autophony / patulous eustachian tube (when I talked, my own voice was loud in one ear, and I could hear my breathing/ it felt like I had a bucket over my head.)

*I have not noticed any bad side effects so far

*ENT's advice when spraying into nose- two squirts in each nostril. When spraying, it helps A LOT if you spray in the correct direction. This helped me: for each nostril: Visualize the back of your ear and aim the first spray back and outwards with that in mind (as if the spray was entering your nostril and going all the way back to behind your ear.) 2nd squirt: Then angle the bottle inwards towards your nose, spraying deep back into nose again, but this time inwards. (If this is confusing let me know.)

I have just started this regiment and wanted to share what helped me as soon as I could for anyone else suffering. Autophony / PET is HORRIBLE, I know. This stuff works amazingly, but it requires daily use. I want a permanent cure. So I am going to try estrogen ear drops which are meant to enlarge the fatty tissue around the Eustachian tube (the autophony is caused by it staying open when it shouldn't.) I will update as soon as I try the drops. - Cait"

Maureen again - I have not seen any further update from Cait and would not have missed it if she had sent it to the same forum.  I haven't tried to get the spray so don't know how readily available it is or how costly.  I would like to hear back from you if you do try it.

About the cream on your ear drum - this sounds very like something a Boston ENT who had specialized in Eustachian Tube disorders for about 10 years talked about in a lecture he gave to other ENTs in mid-2015.  The talk is on U Tube and goes for about 20 mins.  You need to enter "17th Causse Otology Course June 25-27 2015 Patulous Eustachian Tube Manohar Bance" into Google (or whatever you use) and it will come up.  I think it would be worth your while to view it.

The hour is latish, here in Melbourne, Australia, so I shall bid you goodnight as I wish you again good luck.

Maureen