MY HEARING LOSS STORY
HELPFUL HEARING HEALTH RESOURCES
IMPORTANT NOTE: If you or a loved one has recently experienced sudden hearing loss, please SEEK MEDICAL ATTENTION RIGHT AWAY. The first 72 hours after experiencing sudden hearing loss are crucial, and swift action is necessary. Steroid treatment may be the only chance to restore your hearing, either partially or, in some cases, intratympanic injections may significantly improve your hearing. These interventions must be administered within the initial 72 hours of the hearing loss.
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Sudden sensorineural hearing loss (SSNHL) is a rapid-onset hearing impairment, often occurring in one ear. The exact cause is not always clear, but it’s believed to involve damage to the inner ear’s sensory organ (cochlea) or the auditory nerve. This can result from various factors such as viral infections, vascular issues, autoimmune diseases, or traumatic events. The sudden loss of hearing is typically noticed within a 72-hour period.
One of the many doctor visits at University of Miami Health System (UHealth) - With Dr. Tricia Sheehan Scaglione, AuD - Tinnitus Specialist, Assistant Professor, and Clinical Audiologist
“I WILL NOT BE SHAKEN.
I WILL FIND MY WAY BACK TO
MY NORMAL SELF AGAIN,
RENEWED, HOPEFUL, STRONGER…”
My Journey to Recovery
Since I began sharing my Meniere’s diagnosis and other vestibular conditions on social media, I’ve received hundreds of messages and questions. I thought this blog would be the best way to compile the information. I hope it helps you or someone close to you going through a similar situation.
Keeping notes on my phone and in a journal was essential to track my symptoms on days when brain fog and vertigo were severe. It also helped me be better prepared for my doctor appointments, which were overwhelming and left me feeling anxious and confused at times.
Please keep in mind that the information here is based on my hearing loss journey. Consult with your doctor about any specific questions regarding your health condition, as every case is different.
My very first hearing test revealed that I had experienced profound hearing loss in my right ear. I was unable to understand speech, not even when amplified through a hearing aid device.
During one of my audiology tests at UHealth Plantation.
THE DIAGNOSIS
To date, I have been diagnosed with various conditions, including Benign Paroxysmal Positional Vertigo (BPPV), caused by calcium deposits in the inner ear.
I have also been diagnosed with Secondary Endolymphatic Hydrops and Meniere’s Syndrome. Consequently, I’ve experienced Tinnitus, Hyperacusis, and Chronic Migraines (possibly Vestibular Migraines).
These conditions are listed and explained at the end of this post.
Sudden sensorineural hearing loss (SSHL), commonly known as sudden deafness or “Ear Stroke,” occurs as an unexplained, rapid loss of hearing—usually in one ear—either at once or over several days. IT IS CONSIDERED A MEDICAL EMERGENCY, AND YOU SHOULD SEEK MEDICAL ATTENTION RIGHT AWAY. It is caused by damage to special cells or nerve fibers in the inner ear. Sometimes, the hearing loss is caused by damage to the nerve that carries signals to the brain.
Resting after receiving an intratympanic injection. Steroids, powerful anti-inflammatory medications in small ear doses, were administered. Following the injections, I experienced fullness in my ear, nausea, and vertigo.
Meniere’s symptoms include vertigo (spinning sensation), sensitivity to loud sounds, tinnitus (ringing in the ears), temporary or permanent hearing loss, and fullness/pressure in the ears. During severe episodes, I also experience nausea, vomiting, and an increased risk of falls.
2017, the year it ALL BEGAN. . .
AUGUST 2017
8/3/17 - THURSDAY EVENING: The night before I lost my hearing, I attended an art exhibition in Downtown Miami. The event was held on the 33rd floor of a skyrise hotel. When I rode the elevator on my way up, I recall everyone in the cab complaining about ear discomfort due to the sudden pressure change. The elevator was going incredibly fast, and my ears felt blocked for about 10 mins, but I was OK for the rest of the evening (normal hearing and no pain). I discussed the elevator incident with several ENT's and neurologists when I lost my hearing overnight, but only one of the specialists took an interest in this information and said that this incident could have triggered / caused barotrauma and therefore, my sudden hearing loss (considering that we now know I have Secondary Bilateral Hydrops.)
8/4/17 - FRIDAY:
- I woke up with intense pressure on the right side of my head, and I couldn't hear from my right ear. The right side of my head was numb, I had lost the sensation in several parts of my head (below my right eye and ear, and the back of my head).
- I went to an Urgent Care Center, and I was sent immediately to an Ear Nose Throat (ENT) doctor after some examination as it was considered an emergency.
- Dr. Levine, my first ENT, ordered an audiology immediately. Several hearing tests were performed and It was there and the were I was diagnosed with Sudden Profound Hearing Loss (SSHL) on my right ear: almost 100% of my hearing was gone. I couldn't hear anything out of my right ear and started experiencing Tinnitus, numbness, and mild pain around the ear area.
- I also felt a bizarre sensation; the best way to explain it is: I felt as if I had an air balloon expanding rapidly inside my head. I noticed this sensation got worse when stepping out of the house to go to the doctor, so basically being inside the car in the summer heat. The sensation was less intense in the cooler temperatures, i.e. inside my home with the A/C on. It was a horrible sensation, feeling how this growing object, which I can only compare to a ballon, was increasing in size so fast. It felt like my head was going to explode at any moment. I felt dizzy and disoriented, unable to talk coherently.
- My first ENT, Dr. Levine, prescribed oral steroids: Prednisone 30mgs daily. I only took them for four days because the side effects were causing my skin to itch uncontrollably, and I was experiencing severe insomnia and anxiety. Also, my face was red/flushed all day long. This weekend was uncomfortable, I couldn’t sleep well which made all the symptoms worse.
*The numbness in my head lasted around 2-3 months. Doctors still don't know why this happened. Some have attributed this to severe inflammation of my auditory nerve, but still not confirmed.
** I've been told by many specialists that in cases like mine, the most important thing is to seek medical care right away, especially during the first 72hrs as steroid treatment could be the only chance of getting your hearing back. I was fortunate because the doctor at the Urgent Care referred me to the ENT right away, who recommended getting Intratympanic Steroid Injections.
Intratympanic Steroid Injection Prep
Intratympanic Steroid Injection (Gentamicin). When used in Meniere’s Syndrome, a steroid injection reduces the frequency and severity of vertigo attacks.
8/7/17 - MONDAY:
- First Transtympanic Injection of Steroid and Gentamicin.
8/8/17 - TUESDAY:
- MRI of the brain with and without contrast. Ruled out tumors, acoustic neuromas, and any other neurological problems.
8/11/17 - FRIDAY:
-I went to the closest ER in Aventura Hospital around 4am because I woke up in the middle of the night feeling as if my head was being hammered continuously, and I truly felt as if a vein was going to pop. I was experiencing intense pain in my eyes and ears, a vertigo attack, nausea, and vomiting.
I was discharged after an hour as they didn't know what else to do. The ER doctor only gave me Meclizine to stop the vertigo attacks, which helped relieve the dizziness and nausea.
- Later in the day, I had my 3rd appointment with Dr. Levine: A second Intratympanic Steroid Injection was administered in the ear, and I was given oral steroids again.
8/14/17 -MONDAY
- LabCorp ANCA / LUPUS Test: Results came back normal.
8/15/17 - TUESDAY
- Balance Test ENT Aventura
8/16/17 - Dr. Levine suggested I should see an Oto-neurologist as this was a complex case. After searching for options only, I found the University of Miami Ear Institute, and I had my first appointment with Dr. Adrien Eshraghi; he applied the 3rd Intratympanic Steroid Injection. Sadly, this showed no improvement in my hearing.
8/21/17 - University of Miami / UHealth Plantation:
I was asked if I wanted to get another steroid shot because only three are recommended. I agreed to the 4th intratympanic steroid shot, and Dr. Eshraghi administered it.
8/25/17 - University of Miami / UHealth Plantation
MILAGRO! (It's a miracle!) The audiology test revealed that my ear had reacted positively after the 4th shot, and my low frequencies had shown a slight improvement. Dr. Eshragi proceeded to continue to a 5th Intratympanic Steroid Shot.
8/25/17 - Mount Sinai Miami Beach
- 11 am: Dr. Diaz, Neurologist. This appointment was not successful. No medical tests were ordered, no new information was given. It was very disappointing.
SEPTEMBER 2017
This month was a blur. I was experiencing the same symptoms (vertigo, brain fog, balance problems, migraines) and no relief.
I went back to work again and tried to get back to my normal routine, but this only aggravated my condition. Being exposed to the office lights and sounds was bothersome. Having conversations with others was difficult. I felt mentally and physically drained.
On my next appointments with my Otoneurologist, I was given more Gentamicyn, injections #6, #7, and #8. Because of this, I was able to regain hearing of low frequencies — they went back to normal levels. However, I only recovered about 10% of my high frequencies. I started several medications for the hydrops, dizziness, and migraines.
OCTOBER 2017
10/20 - 10/21 - Strong vertigo episodes. Debilitating, severe dizziness, room spinning sensation, and nausea. I was in bed for the most part. I couldn't eat. Everything made me feel sick.
10/27/17 - On this day, I began my Vestibular Rehab Therapy (VRT) Sessions at UHealth Plantation. I was assigned to a wonderful, caring physical therapist, Ms. Zahilly Salinas. When I went to see Ms. Salinas, I could not walk straight. I was constantly stumbling and even falling, swaying to the right when walking, and couldn't drive. I did only eight sessions, but they were highly beneficial because I improved my balance. I continued doing VRT home exercises that helped me as well.
To learn more about the UHealth team, click here.
Audiology performed by Dr. Tricia Sheehan Scaglione, AuD at UHealth in Plantation, FL
10/30 - Horrible vertigo attack a few mins after waking up.
Appointment with a new neurologist. His name is Dr. Andrew Lerman.
While sitting in the waiting room, I had another vertigo attack. From the moment I arrived to his office I was feeling very sick. I sat down to wait to be seen, but I was feeling extremely anxious and my body didn’t feel right. I felt like I was "out of it." I thought I was going to faint. I asked the nurses for help me because I was falling off my chair. The doctor brought me into an examination room, and he was trying to stabilize me. He then went on to ask more questions. He then prescribed a new medication as he suspected I could be suffering from vestibular migraines too.
NOVEMBER 2017
November was a busy month with many follow-up appointments with all specialists. My tinnitus got louder and louder… A static sound 24/7 would sometimes increase rapidly and then go back to a "normal" / baseline, which was incredibly bothersome. I also had a constant beep that would change in frequency.
11/27/17 - More tests were done to assess if I, in fact, suffered from Meniere's. Some of the tests were:
Electro/video-nystagmography
Rotary chair
Computerized dynamic posturography
Vestibular-evoked myogenic potentials
Head impulse test
For more info about these tests, click here
DECEMBER 2017
12/04/17 - ECochG (ECOG) Testing (Electrocochleography)
My test results were inconclusive, which was frustrating. As a vestibular patient that has been through so much, sometimes we just want to find an answer, a less vague doctor visit summary, so we can have a more precise roadmap. But nothing was determined here. The specialist said the test was unclear.
12/05/17 - More audiology tests...
12/11/17 - Head and Neck CT Scan
ECoG Test - an assessment used in the diagnosis of Meniere's disease and other disorders.
After an audiology test showed more decreased hearing, my ENT doctor suggested an 8th injection of Gentamicin.
Rotary Chair, one of the Vestibular Function Tests at UHEALTH — University of Miami Hospital
2018, the brain fog. the ups & downs...
MARCH 2018
3/8/18 - BPPV, migraine, feeling foggy, disoriented, intensified Tinnitus, lethargy for eight days in a row. These were horrible days. Mostly laying down in bed and not able to do anything at all.
JULY 2018
7/30/18 - New audiology revealed word recognition percentage showed a decrease. I received yet another Intratympanic Steroid Shot. This was injection #9. Back to feeling fatigued. Mostly laying down in bed.
2019, TMJ? Food sensitivities? What is the real cause of my pain and balance problems?
JANUARY 2019
01/02/19 - I have been experiencing earache right after I eat, combined with a headache (mild to medium) only on the right side of the head (the ear affected is the right one). At first, I thought it was due to high salt intake. I noticed this especially one day after eating salty almonds; however, I also noticed the same symptoms when my salt intake was not high. A few days ago, I experienced the same pain right after eating a dessert over the holidays. I would attribute the pain to eating certain foods high in salt or sugar. Nevertheless, I am experiencing earache and headaches since the end of November almost every day after eating, even when I eat healthy foods low on salt and no sugar. I still can't pinpoint the real reason. I need to know what my triggers are.
A Facebook Meniere Support Group suggests that this seems to be a problem with my jaw. I do have a TMJ problem and have been advised to wear a mouthguard.
APRIL 2019
I am experiencing hearing fluctuations more than ever before. My ears get blocked intermittently during the day, so I can't hear from both ears for seconds. It feels like someone is flipping a light switch on and off. I lose the ability to hear for seconds, and it comes back again, and so forth. Keeping a conversation fluid is a struggle as I often have to ask people to repeat what they said.
Dizziness and brain fog continue to be present, which is frustrating as it slows me down, and I am an active person.
2020 & 2021
Still experiencing Tinnitus, sound sensitivity, and ear pressure, but no longer have severe Hyperacusis and vertigo attacks.
Brain fog is still a constant in my life, and feeling lethargic and exhausted due to high-stress levels, but not as much as I experienced extreme fatigue during the first years after my sudden hearing loss.
Currently not taking any medications.
2022 & 2023
how do i feel tHESE DAYS?
What are your most debilitating symptoms today? What has gotten better with time? Here are some recent updates based on all the questions I’ve received from your emails and DMs.
VERTIGO. DIZZINESS. MYOFASCIAL PAIN.
Though I am still experiencing dizziness and brain fog daily, I’m glad to report I haven’t had a severe, full-blown Vertigo attack in a long time. I used to suffer from violent vertigo episodes that would keep me in bed all day long, unable to lead a normal life. I also suffered from Benign Paroxysmal Positional Vertigo, or BPPV for short, but this type of temporary dizziness resolved after several sessions of Vestibular Retraining Therapy.
In addition, due to a discovery of cervical arthritis and several herniated cervical disks, I was diagnosed with Cervicogenic Dizziness a year ago—this can often result from a whiplash injury in car accidents or prolonged bad posture. In my case, I tribute it to a home accident, falling down the stairs, and, as a painter, terrible posture.
Cervicogenic Dizziness is characterized by imbalance, unsteadiness, disorientation, dull neck pain, limited cervical range of motion (ROM), strong headaches, and migraines. Needless to say, I can’t live without my heating pads. I even carry them with me on trips to ensure I decompress my neck and back after a long day.
Lastly, my Temporomandibular Joint Dysfunction or TMJ issues have improved, although I stopped wearing a mouth guard a while ago. I used to feel so much pain in my cheeks. I was carrying all that tension and discomfort, which generally builds up, and it is excruciating at the end of the day. Even though I still experience some of that myofascial pain and tension, it has decreased in the past year.
INTERNAL SOUND (AKA, TINNITUS)
I still struggle with constant ear pressure, variations in my hearing, and Tinnitus. The internal sounds in my right ear vary from hissing, sirens, whooshing, pulsing, buzzing, and clicking. However, the permanent sounds are always static, ocean waves, a white-noise-like sound.
EXTERNAL SOUND (ENVIRONMENTAL)
I'm still susceptible to sound, especially high-pitched noises, so I have to wear custom earplugs with filters to tune out those sounds. However, wearing these plugs is not the most comfortable thing.
It is challenging to have group conversations. I can't hear well what the people next to me are saying, so I have to constantly take them off and off to be able to follow a conversation, especially in a loud place.
My ears get blocked intermittently during the day, so I can't hear from both ears for seconds. Though it is never an entire minute, it is still bothersome when having conversations because I lose parts of it. It is also scary because I often wonder if that silence and void will be longer the next time.
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ALWAYS KEEP IN MIND THAT YOU ARE YOUR BEST ADVOCATE.
IF SOMETHING DOESN'T FEEL RIGHT, KEEP RESEARCHING,
CONTINUE LEARNING AND EDUCATING YOURSELF,
AND FOLLOW YOUR INTUITION
UNTIL YOU FIND THE RIGHT SPECIALIST,
SUPPLEMENT, THE BEST TREATMENT FOR YOU.
ALWAYS LISTEN TO YOUR BODY, AND NEVER LOSE HOPE.
EVEN IF YOU DON’T SEE IT JUST YET,
THERE IS LIGHT AT THE END OF THE TUNEL.
WITH LOVE,
NICOLLE
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I hope you have found this blog helpful.
I wish you all the best and better days ahead.