My Hearing Loss Journal

Profound Sudden Sensorineural Hearing Loss  shown on my first audiology test.

Profound Sudden Sensorineural Hearing Loss shown on my first audiology test.

During one of my audiology tests at UHealth Plantation

During one of my audiology tests at UHealth Plantation

Intratympanic Steroid Shot (Gentamicin)

Intratympanic Steroid Shot (Gentamicin)

An Artist’s Journey through Hearing Loss - Story by UHealth

Rotary Chair - Vestibular Function Tests at UM

Rotary Chair - Vestibular Function Tests at UM


ONE YEAR AGO TODAY

Exactly one year ago I experienced a profound Sudden Sensorineural Hearing Loss (SSHL) in my right ear—commonly known as Sudden Deafness.   Time flies for some, but for me, this past year has gone by very slowly and it has been a rollercoaster of emotions. During these 12 months,  I have felt sad, lonely and guilty for not being energetic enough to be able to work on my projects at the same speed or capacity I'd like to be able to.

Planning has become such an unpredictable thing these days because your mind wants to do one thing, but your body says otherwise. Sometimes I wish I was in a better mood so I could achieve more because the world moves faster and we are expected to conquer more and more every day.

If you or a loved one are suffering from a chronic physical or mental illness, that is for the most part invisible, I feel your pain. We often struggle in silence as we face the prejudice of certain expectations of how the world sees or doesn't see these conditions. We are expected to recover in a certain period of time so when we don't, the world starts questioning you, and you start to question yourself as well. Am I doing the right thing, and am I doing enough to heal fast? Most of the healthy population is back on their feet and moving on with their lives in no time. For me, it feels like the flu, the pain and fatigue doesn't go away. So what then? 

Living with a chronic health condition can be a very isolating experience. They often develop unexpectedly and it is quite a shock going from healthy to unwell overnight. Usually, one condition develops and then, other ones follow.  And with that the misdiagnosis, the medical tests, the long wait to see what works and what doesn't. 

However, it is OK to learn to enjoy the silence that isolation brings,  it is OK to have periods of grief, it is OK to not feel OK sometimes and give ourselves those days when we are not "available" to the world.  After those days pass, we can come back stronger ready to keep fighting our fight.

This is a reminder that compassion starts with giving yourself the necessary time to heal, as long as it takes.

 

THE DIAGNOSIS

To date, I have been diagnosed with many different conditions such as Benign Paroxysmal Positional Vertigo (calcium deposits in the inner ear), Tinnitus, Hyperacusis, Chronic Migraines and Vestibular Migraines, Probable Ménière’s Disease and Secondary Endolymphatic Hydrops.  The links explaining what these conditions are will be listed at the end of this post. 

Sudden sensorineural hearing loss (SSHL), commonly known as sudden deafness, 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 these special cells, or to the nerve fibers in the inner ear. Sometimes, the hearing loss is caused by damage to the nerve that carries the signals to the brain.

 


MY JOURNAL

I have kept a journal which has helped me keep track of my symptoms, medical tests and doctor appointments. I hope this helps someone who is going through a similar situation.

Needless to say, this is only a PERSONAL RECOUNT of my hearing loss journey, so please consult with your doctor any questions you may have regarding your own experience as every case is different. 

 

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, everyone in the cab felt the ear discomfort due to the pressure change. The elevator was going incredibly fast. My ears felt blocked for about 10 mins, but I was OK for the rest of the evening. I discussed the elevator incident with several ENT’s and neurologists when I lost my hearing,  but only one of them took interest on this information and said that this could have been the trigger or cause of the barotrauma for my sudden hearing loss (considering that we now know I have Secondary Bilateral Hydrops.)

8/4/17 - FRIDAY:
- I woke up with a strong pressure on the right side of my head and I couldn't hear from my right ear. The right side of my head was also numb.

- I went to an Urgent Care Center and I was sent immediately to an Ear Nose Throat (ENT) doctor after doing some examination.

- The first ENT I saw ordered an audiology. Hearing tests were performed and I was diagnosed with Sudden Profound Hearing Loss 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, as well as, numbness and mild pain around the ear area. I had a strange sensation, the best way I can explain it is: I felt as if I had an air balloon inflating inside my head. This would get even more accentuated when stepping out of the house to go to the doctor, in the summer heat, or in a hot car; as opposed to the cooler temperatures of being inside the house with the A/C. 

- I was prescribed to take oral steroids: Prednisone 30mgs daily. I only took them for 4 days because the side effects were causing my skin to itch, as well as, insomnia, severe anxiety; and my face would get red/flushed.

- - - 
*The numbness in my head lasted around 2 months. (Doctors still don't know why this happened. They have attributed it to an inflammation of my auditory nerve, but they are not 100% sure.)

**I've been told by many specialists that in these cases the most important thing is to seek medical care right away, especially during the first 72hrs as the 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 immediately recommended doing the shots. 

 

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 other neurological problems.  

8/11/17 - FRIDAY:
-Went to Aventura Hospital's ER around 4 am. I woke up in the middle of the night feeling as if my head was being hammered continuously, and as if it was going to explode. 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 with me. The ER doctor just gave me Meclizine for vertigo. 

- Later in the day, I had my 3rd appointment with Dr. Levine: A second Intratympanic Steroid Injection was administered 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 - University of Miami / UHealth Miami Downtown:
Dr. Levine indicated I should see an Oto-neurologist, so I went to see Dr. Adrien Eshraghi and he applied the 3rd Intratympanic Steroid Injection (no improvement in my hearing was shown in the audiology.) 

8/21/17 -  University of Miami / UHealth Plantation:
I was asked if I wanted to get another steroid shot because only 3 are recommended. I agreed to the 4th intratympanic steroid shot and Dr. Eshraghi administered it.

8/25/17 - University of Miami / UHealth Plantation

MILAGRO! The audiology test revealed that my ear had reacted possitively after the 4th shot and my low frecuencies 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 (no new info was given.)


SEPTEMBER 2017

This month was a blur: Similar symptoms. I tried to go back to work and to my normal routine, but it only aggravated my condition. 

Shots 6, 7, 8. Low frequencies went back to normal levels. 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.

10/27/17 - Began Vestibular Rehab Therapy (VRT) Sessions at UHealth Plantation. My physical therapist was Ms. Zahilly Salinas. She was an amazing therapist. When I went to see Ms. Salinas I was not able to walk straight, I was constantly stumbling and even falling down, swaying to the right when walking, and couldn't drive. I did only 8 sessions, but they were extremely helpful because I was able to regain my balance. I continued doing VRT home exercises that helped me as well. 

To learn more about the UHealth team, click here
 

10/30 - Horrible vertigo a few mins after waking up.

Had an appointment with a new neurologist,  Dr. Andrew Lerman.

On that morning, I had another vertigo episode at his office. He was trying to assess if I suffered from vestibular migraines, he prescribed a new medication. 


NOVEMBER 2017
On and off symptoms. Louder tinnitus, a static sound that is constant and sometimes increases and varies in volume, but for the most part is always present. 

Follow-ups with all specialists. 
 

11/27/17 - Tests:

  • Electro/video-nystagmography

  • Rotary chair

  • Computerized dynamic posturography

  • Vestibular evoked myogenic potentials

  • Head impulse test

For more info, click here

 

DECEMBER 2017

12/04/17 - ECochG (ECOG) Testing  (Electrocochleography)

My test results were inconclusive.

 

12/05/17 - More audiology tests

12/11/17 - CT Scan

 

MARCH 2018
3/8/18 - BPPV, migraine, feeling foggy, disoriented, tinnitus increased, lethargy. This lasted about 8 days in a row. Bad days. Mostly laying down in bed.


JULY 2018
7/30/18 - New audiology revealed word recognition percentage showed a decrease.
Another Intratympanic Steroid Shot (Gentamicin) was administered. To date, this is injection #9. Back to feeling fatigued.  Mostly laying down in bed.

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, Meniere’s is known for this, I noticed this especially one day after eating salty almonds; however, I also noticed the same symptoms during days where 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 these types of headaches since the end of November almost every day after eating, even when I am eating health foods low on salt and no sugar. I still can't pinpoint the real reason, I need to find my trigger/s.

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 mouth guard during the day and another one at night, but I have to admit, I forget sometimes. More on this soon.


Useful Links

VIDEO STORY BY UNIVERSITY OF MIAMI
https://www.youtube.com/watch?v=x1tiEhQR2mY
 

TYPES OF HEARING LOSS
https://hearinghealthfoundation.org/types-of-hearing-loss/

 

DEGREES OF HEARING LOSS
https://hearinghealthfoundation.org/degrees-of-hearing-loss/

 

SECONDARY ENDOLYMPHATIC HYDROPS
https://vestibular.org/secondary-endolymphatic-hydrops-seh

 

MENIERE'S DISEASE
https://hearinghealthfoundation.org/what-is-menieres-disease/

 

BPPV
https://vestibular.org/understanding-vestibular-disorders/types-vestibular-disorders/benign-paroxysmal-positional-vertigo

 

TINNITUS
https://vestibular.org/tinnitus

 

HYPERACUSIS
https://hearinghealthfoundation.org/what-is-hyperacusis/?rq=hyperacusis

 

MENIERE’S FACEBOOK GROUPS

Meniere's Vertigo Tinnitus TMJ : Meniere's no more chat and support group

 

SPECIALISTS

Adrien Eshraghi, MD
(Miami, FL, U.S.)

https://pmc-umiami.provider-match.com/provider/Adrien+A+Eshraghi/52620


Tricia L Scaglione, AUD & Director of the Tinnitus Clinic (Miami, FL, U.S.)
https://doctors.umiamihealth.org/provider/Tricia+L+Scaglione/526097

 

Dr. Jorge Melo Moyano
(Barranquilla, Colombia)

http://www.otocen.co

 

*Special thanks to my dear cousin, Aixa Cure, MD in Buenos Aires, Argentina, for all her advice and support during this time.

 

HOW TO HELP OR MAKE A DONATION

HEARING HEALTH  FOUNDATION
https://hearinghealthfoundation.org/how-to-help/


VEDA - LIFE REBALANCED:
https://vestibular.org/civicrm/contribute/transact?reset=1&id=5
 

HEARING LOSS ASSOCIATION OF AMERICA:
https://www.hearingloss.org/make-an-impact/donate/

 

 

Nicolle Cure