Long term possible ETD, Sinus and Head pressure issues

Hi guys,

Sorry I haven't posted for a while.

Over the past 4/5 months I've had CT scan of Sinus & Jaw. Which found nothing, and I've had a brain MRI recently.

My ENT consultant thinks I have a neurological disorder of some sort - this is related to my facial pain and could be related to my ears etc.

I'm going for my results on the 1st of May so I will let you know.

In terms of the popping and ringing ears, after 5 years I'm not pretty much used to this and it doesn't bother me that much anymore. I would rather just know there is nothing seriously wrong and have no more pain.

Thanks

Jack

I was just wondering if anyone in here experiebces dizziness, imbalance or vertigo from their etd? My ears are constant. popping, crackling, plugging and super sensitive to elevation changes.

However my most annoying symptom is the dizziness that seems to come and go. Always worse when I have a cold. Please let me know if you experience similar symptoms! Thanks

Because you have sinus inflamation without infection during endoscopic sinus  exams (or a CT scan of the sinuses)  perhaps you have silent reflux.  This type of acid reflux can come up your esophagus, spill over into your throat, and travel up into the nasopharyngeal area - and enter the eustachian tube and travel up into the ear, causing severe inflamation of the sinuses, eustachian tube and inner/middle ear.  Goggle "Dropping Acid" a great book by New York-based otolaryngologists Drs Jamie Koufman and Jordan Stern.  While this is a problem common to many infants and small children it also does occur to a significant number of  adults.  Low acid diet change, losing weight, temporary medications (proton pump inhibitors) all work together to resolve this problem.  Something worth considering when you visit your ENT doctor.   

Addition thought:  if your issues are neurolgical in nature, then perhaps you have a milder form of Trigeminal Nerve Disorder.  However, I suggest you consider my previous mention regarding silent reflux.

Hi, Was wondering if you found out what was the cause for this as I am having the same problems and I mean every single one you have.

Hi just wondering if any ETD people can help me. i have been suffering from what i thought was lybranthitis on and off for 8 year. Whenever i got an attack cinnerazine always sorted me out. however in november 2014 my dizziness started and this time cinnerazine didn't help at all instead I got a massive headache to go with it. After many trips to docs they forwarded me to a neuroligist who asked about my symptoms and said you have migraines....wasnt happy by now i was on 15 tablets per day (and im only 34)!!! eventually got an appointment to see ENT had tests and hot water in ears mri scan ect all fine.....so they diagnosed me with ETD and Hypercusis.......i just want to find out if anyone else has a massive list of symptoms like i do.....and i'll apologise now for poor spelling and punctuation. i can look at the pc too long without getting a banging head.....my symptoms......massive headache near enouigh 24/7 dizziness/light headedness feel like im hungover or drunk, confused, in a daze, cracking ears, ringing in my ears, easily angered, blurred vision, double vision, numbness down left arm, wake up through the night with numb red blotchy hands, hate going into supermarkets, hate talking, hate listening, memory loss, fall over (about 20 times in last 6 month) walk very slow due to balance, im only asking because i feel terrible i havnt worked a day since september and had to give up work, and it was my own business.....my wife is sick of me because all i want to do is sleep....or yeah another sympton fatigue (very bad)...... and remeber im only 34 and currently on 2700mg gabapentine, 210mg codeine, 180mg cinnerazine, and 100mg of sertraline to keep me sane.....i know some people will think god that amount of tablets no wonder all i want to do is sleep......but i was like this before the meds....the meds only help take the edge off the headaches.....thank you for taking the time to read this.

.....oh yeah i have hypercusis also and sensitivity to light thank again people.

Have you looked into a condition called Chiari Malformation it's quite rare and is diagnosed by an MRI but it causes pressure type headaches x

Hi Jacko,

What a relief to find someone suffering with the exact same issues as me! I literally could have written your post. My problems started about 3 or 4 years ago and I am beginning to believe I will have to live with this for the rest of my life. I have a CONSTANT need to do the valsalva maneuver to reduce the pressure and release blocked air. It feels slightly better for a minute and then I have to do it again (during times when I'm having a flare up). Certain things exaccerbate my symptoms such as alcohol and caffeine. I have pain in my face and neck area under my ears in the e tube area. I have pain in my forehead and sometimes the pressure gets so bad I feel as if it is an emergency and I need help fast. When that happens I usually have a panic attack because I don't know what is happening andnit scares me. I have been to the ENT.. Actually a few different ones and they can't find anything wrong. Sooooo frustrating!!! I want there to be something... So that it can ve treated and GO AWAY! I want someone to literally cut upen my sinuses and figure out wtf is going on. It is ruining my quality of life. Just writing this I am in tears. Like you, I have had to just go on living my normal day to day life. People ask me, why do you keep holding your nose? Why do you keep squeezing your etes tight and pressing on your face? I don't even realize I'm doing it now... It sounds like we both have a chronic long term issue and I hope we can be a support for each other. Hope all is well!

Ps. Im a 29 year old female so close to your age.

Natalie

Well, I found this discussion as I was browsing Google trying to figure out some sort of reason for why I'm feeling this way.

I have a history with accumulating fluid in my middle ear and every single time, with the assistance of Benadryl, it's cleared up. I have never had an ear infection. The only thing I can say about my ears is that they're highly sensitive to pressure changes but popping them has never been a problem up until now.

Last Friday, I had a sudden case of loud tinnitus in my right ear and it quickly died down but then my hearing went muffled in that ear. So, as I usually do, assuming that fluid was accumulating again, I started my Benadryl routine. Well, it got better, but not completely. Curious about why I get fluid in my ear so much, I went to the doctor to make sure I didn't have an infection. The doctor said no infection. He then decided to do a tympanometry test on me. Not knowing really what I was in for (he described it as a puff of air and vibration, not an airtight seal on my ear), I went through with it. The test was uncomfortable but I made it through. He said its ETD and prescribed Flonase and sent me on my way.

That night, I developed a full feeling in both ears (my hearing was not affected much at all) and it wouldn't go away. Keep in mind I have had the ability to yawn to pop my ears, so this was unnerving to me. It was so uncomfortable.

I've had this full feeling ever since then and, two nights ago, deciding I wanted to see if I could pop my ears with the Valsalva, I gently did it. The left ear went first without issue and then the right ear built up pressure and I opened my mouth to release it. I thought nothing of it. Well, I realized my hearing went muffled and I have very slight tinnitus in my right ear now (if the tinnitus sticks around, I can learn to deal with it). I am worried that the test put my ears through barotrauma and that I made it worse with attempting the Valsalva. I usually never use that method but I was desperate. Now, I have the full feeling and feel the need to yawn every two seconds to try and pop my ears. I can pop them but the full feeling doesn't go away and my hearing is still muffled. I called the doctor today and told him what was going on and he told me to pick up some Afrin and try that for 3 days and come back if it was still bad.

I have been reading up on a bunch of different possibilities of what could be wrong and to be perfectly honest, I'm terrified. I haven't even gotten water in my ears since I was little because it terrifies me so much, so to have this happen has thrown me into a tailspin of anxiety and stress.

Help?

After my first vertigo attack that landed me in the hospital I've been having a nasty pressure on both sides, more on the left side, ringing in the ear and some pressure on the forehead. I can't even says its sinus and if it is it's bad. This comes and goes but been having for awhile. The feeling is very weird. No pain or dizziness

hi, i got a basic ear infection a few years ago and had itchy ear canals, i left it till i was getting tinnitus cos i had no money to see a doctor,a nd my medical card took years to come to me, eventually got it went straight to the doctor, she gave me five days of antibiotics, on teh fifth day it was just about gone, and i expected her to give me more as she said she would to make sure it was stamped out and wouldnt become antibiotic resistant. she said she would wait till it came back. and it did, she then gave me ten days of antibiotics but by this time i had the infection for over a year, and any info i read from america said chronic infections were treated with up to three months or more of antibiotics, so it started to go but didnt entirely go. i went back in and they said it had cleared up, they just looked with a little light into my ear, the ear wasnt itchy, but damn it still rang nad hurt, i went in three more times to see different docs in teh practice, i got sinus spray which just made it worse and dried out my sinus, and she gave me somethign else which had rectal bleeding and insomnia as a side effect which i would not take since i had insomnia already, one fo the doctors even said theres no such thing as an inner ear. i went to a chinese herbalist who said i needed to sort out my sleep first before she would do anything for my ears, i went to accupunture which sorta helped a bit sometimes but also made it worse, i cant stand needles anyway. and so it comes and goes, when it comes its like someone stabbing me in teh side of the head gently with a knitting needle. and it comes usualy if i get a cold, am run down and i get my throat sides swelled up and sometimes the backs of my ears swell up, which seems to me to mean its the infection and its just got into my inner ear. sometimes i get very dizzy if i turn my head to teh side, and sometimes my jaw and gums swell up as well. it could be in my bone at this point i have no idea. im convinced its an infection. and apparently theres not much hope of antibiotics getting into the ear or bone cos theres f all blood supply in the inner ear. i think im losing my hearing at this point, but its hard to tell, i totally get how depressing it is, it makes me so cranky all the time, and ugh, one day i did some stupid things of alternative ideas online and nearly god, i dont knwo what, felt like my head was on fire. anyway cant even consider alternative online bull anymore, stick a tomatoe up yoru bum and a clove or garlic in your ear and drink cider vinegar. i am afraid to do anything obviously its a sensitive area. i need to go into the doctor again and this time i feel like screaming at her to take me seriously, i might just speak very loudly like a deafened person might. that might get it through that i need some help. on the other hand, when i am taking really good care of myself it does clear up a lot,a nd in a way i thinki of it as my littel alarm system. if i eat well sleep well and take a lot of vitimins then it eases up, but the wooshing is always there, and the ocassional pings, but at least teh pain and clogged sensation goes away. i think if they cant do anything, i might go on a total detox diet even though i dont believe in all that, give up milk drink green smoothies and that, just to see if it works, i will miss my lattes, but i will miss my hearing even more. anyway i have no answers. sorry, but i hear your pain, for now. lol. ya got to laugh. what else can ya do! and keep trying. best of luck.

I have had this condition for the last two months, I have been using the nasal sterpid too with no succes.

The ringing is so loud and my hearing is like I am under water no a good condition for a musician!!!

I will be back to the docs this week its unbearable

Vernon

PREVIEW: The findings indicate there's a CHANCE my hearing loss may not be permanent, however NONE of the 30 decibel drop will come back on its own. The doctor will need to research and troubleshoot lots... but basically, the new loss is not sensorineural, but in the eardrum area - they will have to find out WHY it's happening for me to get back that loss - if they can't find out WHY, it will be permanent. As for all else: my raw throat, my inflammation, pain, and fatigue - it could all be a chain reaction. We don't yet know. *Note: "normal" hearing=all figures to stand at "0" on the top of the chart. As you can see, I am no where near "0"

HISTORY: I was treated with 6 courses of antibiotics, 4 courses of steroids, and have seen several doctors and ENTs over the last 2+1/2 months. I was diagnosed with bilateral ear infections, bilateral effusion, bilateral barotrauma. After none of the medicine helped, I was told to have out-of-pocket surgery. I still had the infections, surgery was excruciatingly painful since I was not put under (extra cost to get put under), and after tubes were placed in my ears and blood from behind my eardrums was drawn with an electronic device (soooo painful), my hearing should have instantly improved but the hearing did not – in fact, if anything, I could hear even less and my inflammation dramatically increased. I feel sick all of the time, have been bedridden mostly for months now and my blood pressure has increased. I’ve had fevers on and off. I am constantly fatigued. I was then told I may also have a TMJ flare increasing all other pain in my jaw, behind my ears and in my throat. None of this was resonating with me. I was told to get a new audiogram by an audiologist and compare the new audiogram to a previous one. I’ve always had a sensorineural cookie-bite hearing loss, but the audiogram would indicate whether my worsening hearing was in fact a new nerve hearing loss (permanent) or to do with the middle-ear (permanent or possibly could be fixed). I was also told to schedule with a neurologist for pain and inflammation. I told them my head felt like I’ve been with a sinus infection for ¼ of a year and that this wasn’t just symptomatic, but that I believed illness is still involved. No one could tell me anything… and so then I had to wait. I was put on a waiting list for the neurologist but the earliest scheduled visit will be end of January 2017. Meanwhile I have no medication and suffer in pain. And the earliest I could schedule a new audiogram with Froedtert was today. And so now my 2nd ENT needs to take time to study my results.

2 DAYS AGO:

What I know for sure is this: the newfound hearing loss is NOT, I repeat is NOT sensorineural. It is NOT a nerve hearing loss! This is good! Not only does it back up my theory that I still have illness, but since a nerve hearing loss IS permanent, I have hope. Also the new hearing loss is a result of 1 of 2 things: either, A) I still have fluid behind my ear drums, or B) there was a problem with surgery. I think it could be both. For starters, I have complained of draining down my throat, pain in my eustachian tubes, and sloshing in my ears the ENTIRE TIME, including NOW. But no one saw any more fluid from looking in my ears so it was believed I was free of infection by now. I think otherwise. Secondly, today I have a raging sore throat – could it be related to all of this? Likely, but there’s no way to know for sure - - for now, am just keeping an eye on it. I feel ABSOLUTELY MISERABLE. Third, was there a problem with surgery? I wouldn’t be surprised either if there had been. Surgery was rushed, it was the day before Thanksgiving, I barely got in, and my 1st ENT (Dr Nordstrom) barely spoke with me, I was in HORRID PAIN and then discharged immediately. I demanded codeine, and finally received it after more back-n-forth with that office. I have not returned to that office since I made my 2nd opinion ENT (Dr Harkins) appointment.

TODAY:

Back in Urgent Care. Swelling and a cold on top of it all. Saw a DO instead of an MD and she put me on 16MG methylPREDNISOLone & vicodin for pain. I'm done with day 1 and feel slightly better at least from last night - I couldn't even sleep longer than 10-min sections due to pain waking me up. My face and ears and throat were beyond raw and swollen. At least now, even though it all still hurts the mucus isn't overwhelming and I can actually breathe a little through my nose. methylPREDNISOLone is a tiny miracle but short-term. I really regret getting the botched surgery of tubes placed in my ears because I don't have insurance to risk taking them out and they say fluid could build back again too. Instead by only alternative now is to get strong hearing aides - I can't believe it. 

Depressed.

please help im 15 and two weeks ago i wasn't feeling so good out of no where i felt lighted followed by a little headache that happened twice i went to doctor and they said i had flud in my ears and a tension headache they gave me ibuprofen and allergy meds on Christmas i went to the er because i still wasn't feeling well still headache but not dizzy anymore they told me it was the flu and they didnt do any tests on me and now a couple days ago i feel lots of pressure on my nose and my head head hurts a little it goes from my right to my left and i feel pressure all over my cheekbones where my eye brows are and behind my eyes and forehead and my ears pop i got meds from target and they do work but its annoying waking up to the same thing im so stressed out about this please help ive been reading online and it say sinus infection or other crazy things like brain tumor im so scared please help asap