Imagine a day where you wake up with a splitting headache. No, not quite a migraine, but pressure. The pressure is behind your ears, across the back of your eyes. Your ears are ringing so loudly that you think this is it – your head is finally going to explode. If you try to sit up, the world starts spinning. You start feeling nauseated from just sitting up in your bed. You can’t think straight, let alone do anything you’re supposed to do.
There’s work to be done, but you feel like you’re going to pass out from the head pain and the vertigo. You just lie back down in bed, closing your eyes and will the headache to go away. You will for the ringing to stop. You start praying for it to stop, but there’s no stopping it. You’re just there in bed with your eyes closed and your ears screaming at you. What did I do to deserve this?
I was diagnosed with Meniere’s disease at age 21, right after a tonsillectomy. My ears were ringing for a couple weeks, but I blew it off as normal. I thought that’s what it was supposed to be like immediately after, anyway. The ringing never went away. It got harder to maintain balance and I kept getting this spinning sensation. At first I thought it was just the painkillers from the surgery. After that, it still didn’t go away. I ended up going back to the ENT that performed my surgery.
After some rushing around, I went from being a throat patient to an ear patient for him. He did some quick hearing tests and exams and then came back. He told me that I had Meniere’s disease. It was something I’d never heard of until I was diagnosed. All I knew was that I wanted it to stop. It’s this constant pressure in your ears that causes the ringing. It causes the vertigo, the nausea – at least I had an answer. Now all I wanted to know was how to cure it. Unfortunately, there is no cure. Meniere’s is a rare but chronic disease that can last for the rest of your life and cause hearing loss.
I didn’t understand the severity of this information at the time that it was being given to me. I didn’t understand it was one of those things that I was going to be suffering through for the rest of my life. Some days are better than others. Then when the weather changes, whether it’s rain or snow or any sort of heaviness in the air – the pressure comes back. The headaches, the vertigo, the inability to do human things – the inability to take care of myself comes back. I can’t get out of bed because the world will start spinning again.
Some days when there’s no heaviness in the air I don’t get the light headed feeling. I don’t get the feeling of pain or nausea that are often there.
Some days I feel like just being able to pass out would be a beautiful gift. I get back in bed and can’t handle the way things are going. I can hardly walk, let alone drive. It causes my depression to flare up – feeling like I’m missing out on life because I can’t get through the day without the world spinning around me. A constant head rush every time I even have to get up to use the restroom. There’s nothing that I can do about it.
Some days it feels like I need to rush to the ER just to beg them to make it stop. I know there’s no way to make it stop, but I just want it to stop. Most of the time at the ER, I’ll have nurses, even doctors, ask me what Meniere’s disease is. It’s not something they see every day. I know there’s nothing they can do to make it stop, and at this point I’m just wasting my time, the nurse’s time, and the doctor’s time. I’m wasting the time of everyone involved because I can’t handle the pain of something that I’ve been dealing with for seven years.
I’ve met very few people who have Meniere’s disease. Most people we know have never heard of it. We hadn’t even heard of it until we were diagnosed. It’s something we have to live with on a daily basis, and when explained – most people say they can’t even imagine having to live with it.
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