Help please, My tube intermittently stays OPEN and it seems most have it closed

I’ve been having this problem with my tubes for about 5 months . No migraines though. Been to ENT 3 times . He keeps telling me to do the Valsalva maneuver. Helps for a little while. Going back to doc in 3 weeks. 

The stress of the Eustachian Tube Dysfunction is probably bringing on a migraine.

Scroll through all the messages about this problem on the Forum.  you're not a lone 

It is an extremely miserable condition.

I post so much about ETD

Anne

Hi Kristin- I feel your pain. I’ve been through something similar. I find help in Chiropractic. My chiropractor adjusts my 1 and 2 cervical vertebrae. It helps but doesn’t cure it. Good luck. Issues like this can affect your life in more ways than you realize. 

Hello Kristincoc

What you are describing is called a Patulous Eustachian Tube or PET disorder.  I have had it for 2 1/2 years, found it very hard to get even a correct diagnosis but in the end, like you, have been told there is nothing that can be done for me.  My right Eustachian tube is open constantly rather than intermittently.  An ENT in April last year told me to put on weight and I did try that but even an addition of 4-5 kgs made no difference in my case.  At least one person on this forum has found relief from putting on weight and only about 3 kg, so if you are underweight you could try this 'cure'.

I do not have migraines although I have had what they call (or used to call) migraine auras, episodes of zigzagging lights in the eyes.  For me these started decades before the PET so I don't think they are related.  Also I have had episodes of vertigo in the past, starting Dec 2011 and ending early 2015 (cause unknown but resolved without intervention).  Again these were before the PET.  The first ENT I saw looked in my ear trying to see the movement of the ear drum with respiration but he was not doing it the right way; the second knew the correct procedure and did see the movement.  Both, however, diagnosed PET conclusively, partly no doubt because I had found an audiologist who did the right testing and produced the conclusive graph.  The first ENT, however, also based his diagnosis on the fact that PET goes away when you lie down; venous congestion closes the tube.  Thus your 'vertigo' symptoms when rolling from side to side in bed are not consistent with PET but with the room spinning and nausea it most certainly sounds like vertigo, despite what your ENT said.  I have only a mild 'disequilibrium', a slight off-balance feeling if I move my head too quickly etc. and this does not affect me when I am lying down so there is something else going on with you.

Now - tips to help.  That's a tough one.  In Melbourne, Australia, there is no one who will try anything surgically but I wouldn't let them anyway as I have read of such attempts that have gone drastically wrong.  Recently someone on this forum said 'bone cement' was the way to go.  The person's forum name is 'Dreaming Tree' and she/he posted in Jan this year; you should be able to look it up.  Others have suggested Patulend (expensive and helps some but not others) and one a nasal spray called 'ipratropium bromide 0.3%' (there is an article on this [apparently] in Healthboard).  If I am having a conversation, when it gets too much I tilt my head a little to the side and press on the side of my neck for temporary relief.  I am pressing on the jugular vein, I think, and this brings about the venous congestion.  Anything that increases your respiration rate will make the respiration sounds worse, so for some people their PET occurs only when doing strong exercise.  Sadly, singing has the same effect - my own special misery with this.

You did not say how you were diagnosed.  The vertigo and nausea aspect would suggest to me that you should have further testing or perhaps get the opinion of a second ENT.

This is a very long post.  Please do feel free to ask me anything else.  PET is a miserable condition to have in every respect.  Good luck.

Maureen