My never-ending ear problem

Source: www.brighamandwomensfaulkner.org/programs-and-services/otolaryngology/ear/eustachian-tube-dysfunction.aspx?sub=0

About me

- Hi, I'm a 23-year-old girl from Denmark currently having a very annoying ear problem that seems to be unsolvable. No matter what I do, I can't seem to get rid of it, and very few people have a clue what might be wrong with my ears. 

- In the recent years, many people from all over the world have written to me that they have the same problem. I'm surprised that many of them say that it started with a massive cold, stress or that they have jaw issues.

- I am a Slavic/Caucasian woman of 176 cm (5', 9") and 70 kg (154, 3 pounds) and average, lean build – my head is quite small, my hips and shoulders are wide/broad. In 2018 I have been diagnosed with PCO, but not PCOS. I 2018 I have also been diagnosed with depression and exam anxiety – for this I've been trying Escitalopram 10 mg and later Paroxetin 20 mg + beta-blockers in regards to exam anxiety (Metoprolol 5 mg, I think).

- I regularly take vitamin D, magnesium and fish oil. Sometimes I also eat psyllium husks to feel fuller. I have tried cut caffeine for many months, so usually I just have one tea a day.

When?

- It seems to have started around May 2014, when we were having a big prom at my high school. I was very sick (cold and fever), but stuffed myself with pills and went to the event anyway. We were having cold weather, and we were only wearing dresses that didn't cover us up 

- I believe I might have gotten a "super cold" after this, which could've created my ear problem.

How does it affect my daily life?

- I'm always looking weird because I'm trying to pop my ears by adjusting my jaw

- I need to sit in the front row to hear stuff clearly

- I can't hear music (or even hum) like I used to in 2014 before the incident. I'm also trying to learn piano, but the notes just don't sound as "clear" as they should

- I feel less like being social because it's a strain to always hears hear "the popping" and it annoys me and makes me sad

- My jaw can hurt from the adjusting I do through a whole day

Symptoms:

- Crackling, popping, clicking sound in the ears when I eat, yawn, swallow, talk

- I recent years (2017 and onwards I think) there is a grating, sand-like sound in the left side of my jaw (maybe it's TMJ?) and I have very sensitive teeth (to sugar and sourness)

- A gluey sensation; like you want to pop your ears but there's some kind of mucus stuck there

- No pain, dizziness, nausea or tinnitus (although I've had a few times where I suddenly got deaf in the ear followed by a strong beep noise – only in one ear at a time)

- Gets a little better if I eat ice cream or if I hold something that vibrates up to my ear (maybe spicy food also does something inside the ears for me, but I'm not 100% sure)

- I can sort of open my ears for a brief moment if I adjust my jaw in a special way (I look like a fish when I do this)

Additional symptoms:

- Twice I've had dizzy sensations, but I've been tested for Ménierès disease and I didn't have it

- Sometimes my ear drum randomly flutters/twitches

- I have VERY sensitive ear drums; if I merely touch my ears I can feel them "tense up"

- A couple of time I've gone completely deaf and had high tinnitus, but this happens in stressful situations mostly – sometimes also when intaking larger amounts of alcohol

- Newer symptoms from 2017 include sudden pain in ear drum, tinnitus in left ear when lying down to sleep and very full ears when drinking alcohol 

- I'm not sure if it's a symptom of some problem with my jaw/teeth, but my teeth are VERY sensitive to sweets and acidity; can't eat most things without drinking water or eating something more "neutral" right after

- I have a LOT of phlegm and keep "barking" it out subconsciously

- I have an acidic feeling in my throat/stomach when I lie down

- My tongue is very white/light green; once I got an antifungal gel for it and it helped, but got back immediately after the gel was finished

What does it sound like for me?

- Like bath foam bubbles popping all the time

- Like pop rocks candy going off

- Like a rubber string being tightly pulled (so that you can hear the string "strain")

- Sometimes if I do the valsalva method it sounds like a foot inside a wet rubber boot (a "squishy wet sound") 

Extra info about me & my ears:

- I was bitten by 6 ticks after a school trip (I think I was 10-13 years old, I'll check with my hospital)

- I had a lot of sore throats and was very hoarse/raspy as a child. I was also frequently on antibiotics due to me picking the skin around my nails. My throat currently has been hurting for a long time and I have green/yellow mucus coming up in the mornings.

- I have weird "purple-ish" stretch marks on my hips

- I have petechiae (pin dots of red color) on my arms and torso + lots of skin tags on neck

- I have weird gel-like eye floaters in my eyes (water cysts?) (see video below)

- I was frequently tired as a teenager and had insomnia. I still feel this way, I'm never well rested from a night of good sleep

- I had a very bad case of mononucleosis around 1/8/2015. I felt like dying for about 2 weeks, couldn't even stand up for a minute to take a shower. When I visited the doctor, I needed to lay down on his desk because I could not keep myself sitting up

- I seem to have very sensitive ear drums – they move if I hear certain sounds, fx if you hit a book with a pen very hard. They make a small, quick movement with minor sounds – like they're adjusting themselves. It is most possibly the stapedius reflex. 

- If I clench my jaw, I can sometimes hear/feel "a rush to my ears". It might just be blood rushing to my head, but I'm not sure. 

- My lips have been tingling/quivering for some weeks now (updated 12/10/2018)

- I might have a minor case of misophonia. I really dread certain sounds, like people chewing, breathing loudly or coughing loudly or clocks ticking. 

- I don't think that this is from exposure to loud sound. I have gone to loud concerts a few times, but with those transparent earplugs in my ears, and I very rarely go partying at places with very loud music (me and my friends prefer bars, lounges or home parties)

Video evidence 

Example of when my ears started clicking (around June 2014):
11/6/2014

I tried 3% hydrogen peroxide to clean out the possible ear wax, but it didn't work:

16/6/2014

Example below in video of me flexing muscles in my mouth/jaw:
23/12/2016

Example of me doing the valsalva maneuver while having a cold:

27/12/2016

Valsalva maneuver after neti pot:

28/12/2016

Moring clicking – short
16/3/2017

Morning clicking – long

16/3/2017

Valsalva maneuver with wet, crackling, sticky noises 

7/6/2017

YouTube playlist with all these videos above: https://www.youtube.com/playlist?list=PLSi_ABicLRGjN6yrJt5TsIQ0LjCyFHsjn

How many doctors/ENT doctors have I visited?

- About 12 or 13 in total. I think I know the hearing test by memory now! I know the whole deal - the camera up the nostrils, the measurement of pressure, the checking for fluids, etc.

What examinations have I had done?

- Normal throat examination with swabbing and sending to a lab (no diseases found)

- Allergy test (I think it was a standard one, with like 10 or 12 animals/foods/things tested)

- CT scan in PL (8th July 2015)

- 3D scan in DK (2015)

- Ionophoresis (1,7) with hydrocortison (in August 2016)

- A scan of my jaw when I visited an oral & maxillofacial surgeon (in September 2016)

- MRI scan in DK (24th January 2018)

A whole set of tests, treatments and medications on Poland in 2017, consisting of:
Audiometry tonal (dB HL)
Tympanometry
Eustachian tube test
Audiometry tonal; high frequenzies
Treshold comfort test UCL
DPOAE test
ABR-latency from brain stem

- Diagnosis, Milgamma vitamin B and Nivalin drugs, Electrostimulation of the palate, the tongue and later "Traberta" electrostimulation of the neck region
- Magnetotherapy of both ears
- AMSA inhalation of 0,125 hydrocortison in vibration/1 ml and ACC 1,5 m/1 ml into the "cave" of the eardrum, through the throat, and into the eustachian tubes by vibro-aerozol and overpressure and last psychological consultation

What non medical methods have I tried?

- Valsava method (pinching nose and blowing)

- Chewing gum 

- Otovent balloon 2015

- Eustachi Ear Popper machine 2016

- Neti pot with slightly salted water

- Steam inhaling with mint drops

What typically pops up during my research:

Eustachian tube dysfunction
Patulous ear syndrome
Temporomandibular joint dysfunction (TMJ)
Bruxism (grinding teeth)
Large adenoids, allergies, or a cold
Meniere's disease

NEW 15/10/2016 advice/hints from reddit, fb and mail:

Middle ear ossicles
Tensor tympani syndrom
Crepitus
Chiropractor
Tinnitus
Hopi Ear Candles
Superior canal dehiscence syndrome (SCDS)
Palatal myoclonus
Hearing damage from loud sounds (I don't think I have this)
Vestibular neuritis from negative middle ear pressure
Hyaluronic acid (July 2017)
Autoimmune disease (August 2018)



July 2017 update:
I'm working on getting a treatment with hyaluronic acid inside the middle ear/eustachian tubes in a different country since my homeland can not offer me any good tests or treatment. 
I'm very disappointed in the way the Danish doctors have treated me, some have even been downright rude and unprofessional, saying that "it's all in my head, I just need to say to myself that "everything's great" every morning and focus on something else". The medical standard here is much lower than what I'd thought, given that Danes have actually helped a lot in the hearing field in general. 

June 2018 update:
Nothing has helped with my ear fullness/clicking, but I am not giving up hope. Last year I even wrote to "NORD: National Organization for Rare Disorders" asking them to look into this disease, but I never got an answer. I get loads of messages on facebook, youtube, blogspot, reddit etc. from people saying they have the same thing and to "hang in there".
This year I am also going to Poland to see if the hospital can help me any further. I really hope they do because I truly feel that there is some negative pressure/fluid in my ears. 
My brother suggested it might be something with the wisdom teeth pressing on the jaw and the eustachian tubes, which is rather interesting. My wisdom teeth haven't come out yet, and I'm almost 23 years old. Maybe he's onto something? 

September 2018 update:
George Ablett from Essex County, UK, recently wrote to me on Facebook suggesting that the problem might be caused by wisdom teeth pressing on something inside the head – the same thing my doctor brother suggested. Very interesting thought. I'll definitely keep this in mind if I can't fix my ear problems in any other way.
George also mentioned this blogpost which supports his theory: https://www.pprune.org/medical-health/294662-blocked-eustachian-tube.html


February 2019 update – possible cure is removal of wisdom teeth:

Jeyashri Chandrasekaran wrote this on the ETD facebook group: 

"I have been suffering from ETD for the last 9 months. 

I used to do high-intensive work out and my ears would completely clog. Running 100 meters was hard for me. I would lose complete control of balance and would feel extremely giddy and dizzy. This was a recurring problem .. 

I would constantly feel fullness in my ears and would feel a pressure difference as well. I would try yawning continuously to pop my ears. This was the case in both my ears. 

I approached an ENT regarding this. I had to get my ear scanned and did an endoscopy as well. There were webs of mucus and fluid accumulated behind my ear drum and in the Eustachian tube because of an inflammation. I had to do an allergy test following that. 

He told me this was because I was allergic to dust and pollen and my city had a lot of that. The doctor put me on meds and decongestants and nothing worked. 

I looked up a lot online and found that for some people the otovent and neti pot had worked and I tried it too. I had relief in my nasal passages but hardly felt any difference in my ears. I tried everything possible and completely gave up on it. I even moved out of the city. 

A couple of weeks back my boyfriend found me a link online where someone had suggested that this could be a case of wisdom tooth. I went to a dentist the same evening.. and yes! Who would have thought of that! That’s what the dentist told me too. 

He said both my wisdom teeth in the upper jaw had grown horizontally big with hardly any space for growth and the upper jaw was pushing back upward causing pressure on the Eustachian tube and there is an inflammation because of this. He quickly got a scan done and showed me. 

So I got my right tooth extracted the next day.. in 4-5 days I found significant relief .. and following that I got my left tooth removed as well. I am yet to have my stitches for the left tooth removed. 

95 percent of the ear-popping is solved and I hardly feel any fullness. It’s almost clear. I would know in a week! The good news is that I have been able to run again after 8-9 months.. 

I could run a good 4.5kms without break today. It still pops very occasionally but I would know if I have got complete relief once the other stitch is removed as well! Fingers crossed!!

I know how hard having ETD can be .. and I really hope all of you find a way out of this .."


June 2019 update:

1) I've heard stuff about Turbinate hypertrophy (and you don't need to have a deviated septum to have this)
2) I've heard I should try Pseudoephedrine (PSE) (drug/medicine)
3) I will upload some pictures from my CT and MRI scans 

Vlogs about researching 

Flight to Poland

13/8/2017

My room at Centrum Słuchu

13/8/2017

Day 2 at Centrum Słuchu – so many treatments!

14/8/2017

Subcutaneous injection – tender and swollen arm? Part 1/2

19/9/2017

Subcutaneous injection – tender and swollen arm? Part 2/2

20/9/2017

What medicine have I tried?

See list below.

In Danish:
Oprettet - Udleveret - Lægemiddel - Form - Styrke - Dosering - Årsag

In English:
Created/established - Handed - Pharmaceutical form - Strength - Dosage - Cause

25/8/2017
Pronasal spray 50 μg Mometasoni furoas (x2 daily)
Clatra 20 mg Bilastnum (x1 daily)
Nivalin injections 5 mg/ml Galantami hydrobromidum (x1 daily) (Sadly, I can't get it on the weekends! – Vici)

07 or 09-12-2016
Ibuprofen
Filmovertrukne tabletter
400 mg or 200 mg
1 tablet 3 gange daglig

Mod smerter
(Not sure about specifics and date because it wasn't a prescription)

05-10-2016
Avamys
Næsespray, suspension
27,5 mikrogram
2 pust dagligt i begge næsebor
Mod rhinitis


15.03.2016
15.03.2016
Ibumetin
Filmovertrukne tabletter
400 mg
1 tablet 3 gange daglig
Mod smerter


30.11.2015
30.11.2015
Flixonase
Næsedråber, suspension
1 mg/ml
1 beholder fordelt i begge næsebor 2 gange daglig i 14 dg
Mod tryk i ørerne


17.11.2015
19.11.2015
Betaserc
Tabletter
16 mg
1 tablet 3 gange daglig
Mod trykken i ørerne


11.11.2015
13.11.2015
Vastarel
Filmovertrukne tabletter
20 mg
1 tablet 2 gange daglig
Mod trykken


21.10.2015
21.10.2015
Betaserc
Tabletter
16 mg
1 tablet 3 gange daglig
Mod trykken i ørerne


03.12.2014
03.12.2014
Pancillin
Filmovertrukne tabletter
1 million internationale enheder
1 tablet morgen, middag og aften
Mod betændelse


02.10.2014
02.10.2014
Budesonid "Sandoz"
Næsespray, suspension
64 mikrogram/dosis
Ukendt


29-09-2014
Nasonex
Næsespray, suspension
50 mikrogram/dosis
1 pust daglig i begge næsebor
Mod løbenæse


18-08-2014
Nasonex
Næsespray, suspension
50 mikrogram/dosis
2 pust 2 gange daglig i begge næsebor
Mod næsepolypper


21-05-2014
Nasonex
Næsespray, suspension
50 mikrogram/dosis
1 pust x 2 daglig i begge næsebor
Mod hævede slimhinder i næsen


Older:
20-03-2014
Nasonex
Næsespray, suspension
50 mikrogram/dosis
1 pust daglig i begge næsebor
Mod løbenæse



MISSING from list (because I don't have the exact date):

- antihistaminer (Duact) (Loratadin? Mildin? Vialerg? I can't remember)
- histaminer

Contact:

If you know ANYTHING about this please contact me at:
Vici1807@gmail.com
www.facebook.com/le.vici
Skype: victoriasobocki or victoria.sobocki

I made a facebook group for people in Denmark with weird ear- nose and throat problems.
Please join so that we can discuss our remedies and recommend doctors.

"Øre, næse- halsproblemer Danmark"
www.facebook.com/groups/597427433792718/

Relevant images: 

CT-scan (computed tomography scan) (click on a photo to enlarge it) (10/7/2015)

MRI (Magnetic resonance imaging) (click on a photo to enlarge it) (30/7/2018)

X-ray of my teeth (22/10/2017):

My uvula and tonsils

Unedited pics with and without flash. I have some weird looking tonsils - rough edges, looking like they have been torn, and with slight yellow teint to them. My uvula is swollen, has white lines on it and curls to the left - could this mean some kind of nerve damage (CN 9+10)? 

I believe a bad case of mononucleosis around 1/8/2015 caused my throat to look like this :( 

Eustachian tube balloon dilation

Source: www.saomaimed.vn/product/bielefeld-balloon-catheter/

Source: www.youtube.com/watch?v=dBln0VwifP8

This is an "Eustachian Tube Balloon Dilation", which I have asked the doctors about here in Denmark because many people say it has worked as a solution to their clogged ears. Sadly, the doctors had not heard of it and informed me that it is not performed in Denmark :(

Grommets (tympanostomy/ventilation tubes)

Source: www.afairgo.net/grommet/

Source: www.danieltweedie.com/grommets/

Some doctors have said that grommets could be a good idea, while others said to absolutely not do it. I'm a bit afraid of getting them, because I don't know if they'll "grow back" or damage my hearing and whatnot. I'm currently trying light medication, because I wanted to see if that worked because I did any kind of more invasive surgery.

Facebook groups/communities you can join:

Keywords: tinnitus, eustachian tube, hearing loss, hyperacusis