Struggling To Find Balance Amidst Bilateral Meniere’s Disease, COVID-19 & Grief

In the hospital for Covid-19, Heather Gonzalez texts her family that she's OK.Six years ago, Heather Gonzalez lost her balance to Bilateral Meniere’s Disease, a vestibular disorder characterized by fluctuating hearing loss, recurrent episodes of vertigo and nausea, and cognitive problems such as difficulty multitasking, concentrating, sensory sensitivity and memory loss. She has also been diagnosed with intracranial hypertension, a condition caused by high pressure within the spaces that surround the brain and spinal cord, which can intensify her Meniere’s symptoms.

This past March, Heather’s health took another serious turn when she contracted COVID-19. For over a month she battled fever and breathlessness, which sent her to the emergency room on multiple occasions.

“I felt like my body was failing me, or I was failing my body,” says Heather. “I didn’t understand how and why I had a fever for 30 straight days. I felt like my body was failing me, or I was doing something wrong because that was so long to run a fever. I fought them for 6-7 weeks, off and on.”

Worse yet, Heather’s 18-year-old son, Logan, also came down with a bad cough and fever, landing him in the hospital, too. And then, just when Heather and her son’s health was beginning to rebound, Heather’s father passed away.

“I just keep telling myself it’s going to be okay,” says Heather.

Heather recently spoke with VeDA about her vestibular journey and her experience having the coronavirus.

VeDA: How has Bilateral Meniere’s Disease impacted your health?

Heather: I’m deaf in my right ear and have limited hearing in my left year. It fluctuates but it’s about 60% good. I have used hearing aids and tried the Baha hearing implant. Cochlear implant is the next big thing to consider.

My balance is horrible at times. On the right side, I have no balance or nerve function, it’s just gone. On the left side, it’s deteriorating. I teeter a lot, almost like someone is pushing me to one side, or over, or backwards. I’ll have one foot come off the ground for no reason.

I also have poor depth perception. For stairs, even if it’s just one step, I need to use a person’s hand or a cane. I lean on my husband a lot.

VeDA: What do you when your husband is at work?

Tilly, Heather's service dog Heather: I have a service dog, Tilly, a yellow lab. She just turned two. When I drop something, she retrieves it for me. Talking while I’m walking is a distraction on my mental thinking, so Tilly carries the mail for me, so I’m not distracted. When I’m walking, I have to mentally focus on my walk. My central compensation is backwards. I don’t have a normal sense of gravity. I focus on the word “forward,” otherwise I could fall backwards.

Also, when I have a vertigo episode Tilly lays on me, across me, which gives me a sense of stability. During an episode, she helps me feel grounded and helps with anxiety. We’re trying to figure out other ways she can help me, which will require more training.

VeDA: When did your vestibular symptoms begin?

Heather: About five years prior to being diagnosed. I was just not feeling well or right. I had vertigo-type episodes. Doctors thought I had an inner ear infection. I also was having a lot of head pressure, which they called migraines. I was struggling to hear. I went to see my primary care doctor. She sent me to an ear, nose and throat specialist to check my hearing. I did a hearing test and sure enough, I had declined hearing, about 25%. During the appointment, the doctor asked me if I was having any other symptoms. I told him about my bad pressure headaches, and he mentioned maybe we should do an MRI to see if there’s a tumor.

I put it off and went back to work, but I was struggling just looking at the computer screen. Words were combining, almost moving. I wasn’t reading right, so I finally got the MRI. Afterwards they called me back pretty quickly and stated they saw something abnormal and wanted to evaluate me. They said maybe there was a cyst or tumor on the temporal bone near my skull.

Before the doctor’s appointment, I started having intense head pressure, especially on the right side of my head. I went to the emergency room, which turned into three-week hospital stay. My vestibular system just went haywire: dizziness, spinning, vertigo, vomiting, intense pressure in my ear and head, a lot of pain. They were focused on a tumor but started doing more studies. It was in a spot they couldn’t do surgery.

They released me from the hospital. I was in such bad shape, I had a hospital bed in the living room so I wouldn’t have to walk upstairs to my bedroom. I used a walker and started physical therapy.

I was working when I was hospitalized. I had just landed a great job and due to my three-week hospital stay I lost that job because I hadn’t been there long enough (only a month). I was let go once they knew I’d be gone for awhile. That was so hard because I was a single mom then, and I was starting enrollment for my bachelor’s degree. I had to give up my good job and school and file for disability very reluctantly. I kept assuming I would be better in a year and my specialists kept telling me my damaged nerves wouldn’t heal and they would get worse over time. So I had to accept that I’d lose more hearing, balance, and that I would have some cognitive issues that go with that. It was so hard to accept.

Over the next six months my hearing kept declining. My mom retired early to become my caregiver. I could not be left alone. My episodes of vertigo and vomiting were becoming more regular. I needed help taking care of my son, bathing, going to the bathroom.

It took a while to realize this tumor was not the cause of problem. The doctors started looking at other things. They referred me to a vestibular specialist and a neurologist, who ordered a spinal tap. After many more doctor visits, finally I had a diagnosis of Bilateral Meniere’s Disease.

VeDA: After your diagnosis, what treatments have you tried? 

Heather: From year one to two, I did a lot of vestibular therapy to improve my balance, eye movement desensitization and reprocessing, to make me comfortable with stimuli. Going anywhere in public was difficult, very overwhelming. There were a lot of trials of different medications. Different doctors recommended natural remedies, diet modifications, as well as FDA-approved medicines. I ended up doing best with minimal prescriptions. Now the main one I take is a diuretic. I can’t have too much salt or it impacts my tinnitus. Salt turns up the volume on the ringing!

That first year I was told I was disabled. I had a hard time accepting that. I wasn’t working, but I figured I could go back to work, but I was told to file for disability. That was one of the hardest things to deal with. I was a mom, I wanted to go back to school, but the damage to my body was too extreme.

VeDA: So, how have you coped since then? 

Heather: Around year two up to now I have learned how to adapt and push to live my life, but with modifications. I started slow with going places, like the beach, and gradually built up to traveling on a vacation. Over time I’ve learned what I can and can’t do. For our honeymoon, my husband and I went to Maui. I so badly wanted to snorkel, but I was afraid of the waves. But I conquered that! I snorkeled most of the days we were there.

When we travel there are days my Meniere’s acts up and we have to cancel outings and stay in the room. We also take ear plugs, lots of meds and essential oils, puke bags, etc. to help me. Most people see on my social media all the happy and fun adventurous pics but don’t see or hear about the days I get embarrassed by having to have help leaving an event early or laying on a floor while I’m dizzy. It’s frustrating because friends on social media will assume I’m just fine but that’s not the whole reality. I share the good pictures and times, not the ones that are bad. However, I still try. I push and live life the best I can. I think others with vestibular issues need to hear that. Try and have fun and do adventures and if you have to lay on the ground in a public place during an episode… so be it. You keep taking steps forward and try the best to live a “normal” life.

Last Christmas, we went to Canada. I was so scared to board the ferry in Washington. I was afraid the water would be choppy. But we brought all the things: my throw-up bag, Dramamine, and ginger chews in case I get nauseous or had an episode. I felt a little weird, but I didn’t let the fear of the ocean stop me.

Mindset is so important. If, in my mind, I don’t believe something, or I have doubts that are stopping me from doing something, I have found if I ignore everything and say, “I can do this, I am going to be okay…” I focus on empowering words that encourage me – they help me stomp out the bad thoughts and doubts. It takes practice and progress to be mindful and continue doing it.

I have a favorite saying: “If it doesn’t challenge you, it won’t change you.” Any physical or mental challenge, I try to remember it’s a good thing. Even if it goes bad, I know now how to make it better the next time.

Cover of the Summer 2020 issue of VeDA's On the Level quarterly newsletterTo read about Heather’s battle with COVID-19, become a member of VeDA’s Community of Support and you’ll receive a copy of “On the Level,” VeDA’s quarterly newsletter featuring testimonials from vestibular patients like Heather, plus information about the latest vestibular research and life-altering tips for coping with vestibular symptoms.