What is Meniere’s Disease?
Meniere’s disease is a chronic inner ear disorder that can lead to episodes of vertigo, hearing loss, tinnitus, and a sensation of fullness in the ear. This unpredictable nature of the condition significantly affects the daily lives of those diagnosed.
My Personal Experience
My journey with Meniere’s disease began in September 2023 with some dizziness a few times within a few days. I thought maybe it was allergies. My right ear was feeling plugged up.
I woke in the middle of the night with what I thought was food poisoning, a month later. I had just gotten over being sick with COVID and had gone out to get something good to eat after the 10 days of Isolation had passed. I did have a bad ear infection with that and was treated in the ER. I didn’t know I had COVID, but they tested me. I thought it was food poisoning because it was coming out of both ends (sorry, TMI)
After that, this happened once a month. It would begin with my body breaking out in a sweat, having to get to the bathroom quickly, then begining to throw up violently for hours. Eventually, I would be able to get back to bed and fall asleep. I would be wiped out for several days after, with sore stomach muscles, and my digestive system a mess. I thought this was food-related somehow because it seemed like it was after I had meat. The first two times it was hamburgers, then it was after a prime rib dinner, so I decided to stop eating meat. Then it seemed after a heavy meal. I had already had my gall bladder removed, so it wasn’t a gallbladder attack, although it was similar to one. This continued about once a month. It was like a really bad hangover without the headache. I don’t remember recognizing I was dizzy at that point.
In March, my next episode started with spinning, breaking into a body sweat, releasing bowels, then throwing up continuously for hours, unable to leave the toilet. This episode was the first one not in the middle of the night; it was in the evening after dinner. My sister happened to be with me that time and took care of me. She was a retired ER nurse, and she asked me if I wanted to go to the emergency room. I declined, she got me back into bed, slept for several hours, and then was able to get up.
My sister encouraged me to see a doctor, so I did. The PA I went to felt like it could be an inner ear issue, which surprised me. She referred me to an ear, nose, and throat doctor. I had two episodes in April.
In May 2024, I had an appointment with an ENT (Ear, Nose, and Throat) PA. (It seems to be hard to see a doctor these days) He checked me out and prescribed Methylprednisolone 6-day pack and Klonopin 0.5 mg for a week. I remember feeling Amazing that week. It was wonderful.
Other than feeling pressure in my right ear and varying tinnitus, I didn’t have any episodes.
In January, after a Christmas trip to AZ. I came down with a bad cold. It took 5-6 weeks before the cough and phlegm cleared out. I later learned I shouldn’t ever let a cold go that long. I had not been a go-to-the-doctor person, but that has changed.
In March 11th, I was a caregiver for a woman with brain cancer. I had not had any episodes in 10 months. I had noticed I was struggling to hear from my right ear; it felt plugged up. We were sitting watching TV, and all of a sudden the room started spinning. I got up, made it to the bathroom, broke out into a sweat, had to relieve my bowels, and immediately started to vomit continually for at least two hours until I was able to get into bed, still heaving bile, and then slept. The next morning, another episode, not as violent as the day before. I went back to my ENT PA and he gave me the same cocktail again as before, but it didn’t work this time. I still don’t know what is wrong with me. I am having a hard time hearing out of my right ear, I feel queasy, there is a fullness feeling on the right side of my face, and a loud ringing. I don’t feel well at all and have anxiety.
I went back to the ENT, PA, and he referred me to physical therapy to have a test done to see if I had crystals out of place in my ear. He also ordered a hearing test. At this point, I have been on the internet looking to see what this might be. I want to know what is wrong with me. Before all this started, I was a healthy person who was not on prescription medication and doing all I could to be healthy. Taking supplements, limiting sugar, and eating mostly healthy foods.
The next week, I had episodes every other day. I was so terribly sick. My eyes have been twitching, sensitive to light and loud noise. I am pretty much staying in bed in a dark room. By the end of the week, I went to the emergency room. I had blood work done, a CT scan, prescriptions for Zophrane, meclizine, kolonapin, and a referral to a neurologist. They advised me to avoid caffeine, no soda, and no alcohol. They could not tell me what I had or what was happening.
So quit drinking coffee, which I love, desperate to feel better. I had already given up soda years ago and didn’t have but an occasional glass of wine, so that was easy to give up. I started on the medications, and in a few weeks, I realized the Kolonapin would keep me from episodes if I took one every other day. Please know that everyone’s experience is different with this disease.
April 16th was my appointment for my hearing test and later that day to see the physical therapist. My hearing test came back that i had significant permanent hearing loss in my right ear. I remember crying because I knew in that moment I had Meniere’s disease. The test at the physical therapy office came back with no crystal issues. I was relieved to know what I had according to the internet, but so sad to know there is no cure.
I went back to my ENT, PA to review my results. He didn’t give me an official diagnosis but did say to cut way back on salt, like 1 teaspoon a day. He also asked if I would take Triamterene for a week. That was another week spent in bed with NO energy, queasy, sweaty, clammy, episodes, low blood pressure, constant ringing, right side of my head feeling heavy. I went back to my ENT PA told him I couldn’t take the Triamterene and he prescribed Betahistine.
Betahistine improves blood flow to the inner ear and helps reduce pressure from fluid buildup. It also acts on histamine receptors, which play a role in balance and inner ear function. It is not FDA-approved and must be purchased at a compound pharmacy. It costs me $98.00 a month; the cost does vary. It took many months to see results, but it has helped me so much, and I continue to take it 3 times a day.
I decided to get a new doctor and a new ENT in May. It was a good decision for me because they helped me navigate through so many issues and diagnosed me with Meniere’s disease and Vestibular Migraines.
I continue to have episodes, but much less frequently. I have had many injections in my right ear, which I feel helped me as well. I still have ringing that sounds like it in my ear, but it comes from your head.
Strategies for Coping
Over the years, I have adopted various strategies to cope with the symptoms. Maintaining a low-salt diet has helped manage fluid retention, while regular exercise keeps my stress levels in check. Additionally, I have learned to listen to my body, recognizing when to take a break and prioritize rest during flare-ups. Support from family and friends has also played a crucial role in my management journey, proving that I am not alone in this struggle.
Through this experience, I have gained resilience and adaptability. While Meniere’s disease is challenging, understanding my symptoms and responding to them has empowered me to reclaim control over my life.
