Here’s my story about living with Meniere’s disease. This illness came from out of the blue, with no warning whatsoever. The first symptom – nothing worrisome at all – was a slight stumble when I stood up after sitting still for about an hour. Half an hour later I started to feel nauseous and decided perhaps I had the flu, and should leave work early. By the time I got home I felt distinctly dizzy – in fact my whole environment seemed to be turning in circles as if I had just gotten off the Tilt-O-Whirl at the fair. I couldn’t walk in a straight line, but I still didn’t think it was a big problem – probably an ear infection, as one ear did feel a bit plugged.
An hour later I was beyond dizzy – the room was spinning, and I had to use every ounce of concentration to try to keep it still. I couldn’t walk without hanging on to the walls and furniture, and I was exceedingly nauseated and unable to keep even water down. I had an unbelievable headache, including a roaring sound in my head, my eyes were tearing, my throat felt tight and my sinuses were draining. And still, I thought it would clear up soon.
How wrong I was! These symptoms persisted virtually non-stop for three days. I was unable to do anything other than lie as still as I could or crawl to the bathroom to be sick. In those three days I lost over ten pounds. Finally, on the fourth day I was able, with assistance, to pull some clothes on and be taken to a walk-in clinic. I still couldn’t walk unassisted, and was unable to bear even normal daylight. I had to keep my dark glasses on except when the doctor needed to look at my eyes. The doctor confirmed that I had some type of ear infection and recommended hospitalization to treat my dehydration, and further investigation by my own doctor.
I was utterly exhausted from this experience. Mild nausea and a feeling of floating unreality persisted for several days. I was afraid to drive, unable to move about normally, and barely able to eat. I was every bit as sick, or perhaps even more so, than when I had scarlet fever as a child, and severe mononucleosis as a young adult. But finally, after about three weeks, my health returned to normal and I carried on with my life, thinking that I had experienced a bad ear infection.
Little did I know that three years later the symptoms would return. That next episode lasted for just 24 hours. I was able to take anti-nausea medication at a much earlier stage, and saw my own doctor the next day. She prescribed a drug that I later learned was specially developed for Meniere’s disease. She also referred me to an ear-nose-throat doctor who specializes in inner-ear problems, and has considerable experience treating balance disorders. Over the next several weeks, before my appointment with the specialist, I had many more episodes of spinning vertigo – a few times I even had two or three attacks in one day.
Going to work was a nightmare, as I didn’t know if I would have another attack, or how bad it would be. Some attacks would last just a few minutes, and I would be able to just hang onto the arms of my chair to keep from falling onto the floor. But others were worse and included nausea. When you’re experiencing extreme vertigo, it’s impossible to run to the bathroom to be sick, because you can’t even stand up. Yet I didn’t want to be throwing up in my wastebasket with all of my colleagues looking on! I realized that I must take anti-nausea medication daily in order to achieve some degree of normalcy.
I finally had my appointment with the specialist, and he ordered a series of tests. In preparing for the tests I was unable to take the prescription my doctor had given me or any anti nausea medication for two days. I was feeling quite unsteady the day of the tests, but managed to get through them. The diagnosis was Meniere’s disease, and the specialist increased the prescription dosage.
A friend who was aware of the problems I’d been experiencing told me about a local Meniere’s support group she had read about in the paper. I started attending the meetings and began to gain insight into my illness. I have benefited from hearing the experiences of other group members who have found ways to reduce their symptoms and enjoy their lives as fully as possible. Many people with Meniere’s lose their hearing over time and have significant tinnitus as well. Learning to understand the disease process has made it easier to adapt to these changes.
Over time I’ve learned many ways to cope with Meniere’s. While the prescription medication does control the intense vertigo most of the time, symptoms can still be triggered by a variety of situations. These include bright or flashing lights, loud environments, eating salty foods, and too much visual stimulation such as looking at striped wallpaper or busy patterns. Learning about these triggers has allowed me to avoid or limit them. Stress is a significant factor as well, and after continuing to work for two years from the time I was diagnosed, I decided to retire. That has been a huge benefit, as I no longer have to force myself to go to work when I feel unwell.
Meniere’s disease and hearing loss are invisible disabilities. I’ve found it helps to involve family members in my coping strategies. Once my family and friends understood the difficulties I face, they have been very supportive. I don’t have to explain why I can’t stay at a social where the DJ is playing music at an ear-splitting volume and using strobe lights. And I don’t have to explain why some days I just don’t feel well. I have found quieter calmer pastimes that I can enjoy – either with my family or by myself. I’m grateful to CHHA Manitoba Chapter for providing help through the Meniere’s support group, as well as other chapter activities.
Special Note – August 2018 The Winnipeg Meniere’s Support Group is currently not active due to the group leader’s retirement, but help is still available via email or by leaving a message for a telephone callback with the SMD Clearinghouse which provides office support to CHHA. Contact information, and information about other resources is available here: Meniere’s Support Group