Hey everybody! I'm new here so I though I'd introduce myself. I've been putting off joining a support group for a while now (something about being in denial... ) but I'm ready to start finding some answers and hopefully give back to the community somehow. I'm glad to have found such a lively and supportive group who gets the whole "ear thing". My journey began at 15 when I started having episodes of fullness and hearing distortion in my right ear. I would listen to music on headphones and think -- that's weird, I'm hearing different pitches in each ear. My doctor said my ear looked fine, so I just dealt with it and it seemed to go away after a few years. When I was 21 I was living in Europe and had started having random bouts of vertigo that would last about 10-20 minutes. The attacks weren't that bad, just "dizzy spells" I thought. I went to an ENT who diagnosed me with Meniere's and gave me a script for Serc. I took the pills and the attacks seemed to go away, so I figured I was in the clear. A year later, back in the States, I was finishing school and feeling pretty stressed. That's when I had my first real vertigo attack. It lasted about 4-6 hours and was by far the most terrifying thing I'd ever experienced in my own body. (Not that I've experienced much outside my body ) I went to the House Ear Clinic and Dr. Derebery confirmed a diagnosis of Meniere's. I got the typical rundown of low-sodium diet, diuretics, etc. I was devastated. All I could think about was: how am I supposed to live a normal life with this new, kind of awful unknown? How am I going to start a career, find a partner, buy a house, travel, and do all those other normal-person things if my body can't even handle the stress of wrapping up a college degree? Not to mention -- I've been a musician my whole life, and now I might be losing half my hearing? That was a strange, dark period in my life. I had a handful of attacks in the year after that. Dr. Derebery recommended allergy injections, and right around that time I started to go into remission. I was symptom-free for about 5-6 years, and let me tell you -- I ate all the salt in the world, stressed myself out, and eventually wasn't even on Serc (much to my compounding pharmacy's disappointment -- LOL). The only attack I had was when I got my wisdom teeth out. But other than that, A-OK. In 2016 I started having symptoms again, but different. Less vertigo and more tinnitus and hearing loss. Since 2017 I've have tinnitus almost constantly. The weird thing is it's turned into pulsatile tinnitus (it fluctuates with my heartbeat, making it sound like an air raid siren). It's loud about 50% of the time. The rest of the time it's more like a high-pitched white noise. In the meantime, I've also developed a strange case of reflux -- not your typical acid reflux after a bad meal, but "airway" reflux that irritates my throat and has left one of my vocal chords mostly paralyzed. Not sure if it could be connected to MM, but one doctor thinks my esophageal valves aren't functioning because I have nerve damage from a virus. Sounds a bit like the JOH theory, doesn't it? So that's my long and winding story -- I feel very fortunate that the MM has gotten more manageable over the years, and I wish I could go back in time and tell my younger self that it's not as bad as it seems at the start. And even though my story isn't over yet -- I still need to get this damn ringing out of my ear -- hopefully it will give someone else some hope as well. Anyway, thank you all for listening and I'm glad to finally be here. Looking forward to getting better together. Robert
Welcome, I hope you garner as much support here as I have. I'm glad you've read about MM and I celebrate and appreciate everyone here who shares their experience. I was diagnosed and started on low sodium diet and an antiviral about 14 months ago but suspect that I could have had this or some viral infection for many years. I do believe that there could be a connection between problems other than the inner ear. I've read about and have experienced reflux, dental problems, allergies. I've had only a couple episodes of vertigo in the last 14 months and that high pitched tone is gone. I used to think that I could hear higher pitches than most people and missed some low frequency sounds. Despite difficulties I was able to work for 40 years, marry, have a son, whose probably not that much younger than you (21), own a home and have a rewarding career. My best to everyone.
Hi Marie! Glad to hear it sounds like your MM is under control and hasn't set you back too much in life. I think it helps us all to hear positive stories! Do you think the antiviral and/or low-sodium diet helped? Or hard to say? Take care, Robert
definitely think antiviral and lo sodium decreased my symptoms and i haven't had vertigo in 8 or 9 months