Hyperacusis and Tinnitus + MEM (Middle Ear Myoclonus)?

Discussion in 'Support' started by pamplemousse, Jun 25, 2022.

    1. pamplemousse

      pamplemousse Member

      Tinnitus Since:
      Cause of Tinnitus:
      Hello, I've been lurking on here for a while trying to find a case similar to mine but I realised each case is unique so I decided to write a post. I hope you can give me advice (please no negativity, I get anxious very easily...) I guess the best way to do this would be a timeline!

      Summer 2016: First time I heard tinnitus. Or at least I think so. I was in my living room and got fleeting tinnitus that didn't fade completely and left a soft ringing, which ultimately went away and I was left with a white noise type of tinnitus. very mild, I habituated quickly and got on with my life.

      2017-present: I started experiencing episodes of what I now suspect is Middle Ear Myoclonus. Sounds like someone tapping on a microphone in my right ear. At first it happened once or twice a year and went away after a couple of hours. But since 2020 it has happened more frequently and this year it started happening almost every week and would take the whole day to stop. I'm not sure what sets it off. It almost always happens when I hiccup, sometimes after I burp, sometimes for no reason at all. This year I noticed that my left ear made a thump when certain noises happened like clanking dishes, but I didn’t really mind.

      April 2022: Following these increasing MEM episodes, I woke up one night with a mild ring in my right ear. At first I thought it would go away because I had episodes like this before but it didn't and I started panicking (even though I only heard it in the quiet). Couldn't sleep for a week. Then one day while I was out with my parents I started hearing what I now know is a reactive tone which sounds like an ambulance siren (not sure if it's relevant but the day I started hearing it I was having a MEM episode.) I hear it mostly when there's some kind of ambient noise but I can heat it if I plug my ears too. It distressed me greatly. Then I caught COVID-19 and weirdly it helped me sleep and calm down lol, but a week after I started developing loudness hyperacusis. At first it was very bad and made my tinnitus louder, I couldn't shower etc. But after a week and a half I was feeling better (I used earplugs as little as possible and forced myself to go on walks with my parents and we live in a very noisy area.) I could meet friends in parks and I took my exams. I could even take public transportation without earplugs sometimes. My ears started to click when I swallow and yawn and it stressed me out for a while but then I started my summer job again and didn't notice it. It was hard sometimes at work, but I felt my hyperacusis was overall improving. Sometimes I could start the day being annoyed by the sound of voices and then end it getting take out from a busy restaurant in Paris feeling great. At that point the tinnitus in my left ear didn't bother me at all, but the siren was still very annoying although less than at the beginning.

      29 May 2022: After a week of maybe overdoing it: work, my brother's birthday (although I left after 30 minutes and went to sleep) and lunch at a friend's house, I woke up at 4 am with my right ear feeling full. Then I quickly noticed that something wasn't right. Sounds were distorted, it felt like a door closing exploded in my ear. My own voice created a sound in my right ear. I could hear a ping over other people's voice. My tinnitus was going crazy. I'd had a similar episode in 2020 but it quickly faded in a day. This time it was way worse. I panicked, I was literally losing my mind, I thought I'd have to go to the psych ward. I took sleeping pills to get through the day and cortisone because I thought I had an acoustic trauma at one of the events I cited above. The next morning the tinnitus had gone down but I still had the strong reactivity which fortunately faded gradually but I still have a weird symptom. When I'm lying with my head on the pillow, if I move my left ear against the pillow, my tinnitus in my right ear gets louder for a few seconds. Same on the other side although my tinnitus is very minimal in the left ear.

      Obviously this setback traumatized me, I'm now very scared of it happening again. I've developed a fear of sounds even though I think my hyperacusis returned to what it was. I can walk outside without earplugs but I jump at every bus, motorcycle etc. I can go to the park but I can't eat at restaurants or take the subway without earplugs. Car is OK but it feels loud. I clenched so hard my jaw cracks a lot now and gives me pain but fortunately it never lasts. My ears feel like they need to pop regularly. Tinnitus is pretty mild, but it fluctuates a lot throughout the day. In the morning it's almost inaudible, then it starts sounding like the echo of a bell (plus the sirens that never went away.) It's not very loud but it's worse after I shower or go outside although it settles back down. My original white noise tinnitus did that too but I was so habituated tbh I thought it was the same for everyone.

      I did all kinds of tests including MRI and everyone tells me there's nothing wrong with me. I have no hearing loss even in high frequencies (my test went up to 16 kHz, did it at the end of April after the onset of the siren-type tinnitus.) It's very frustrating because I don't know what started my tinnitus! I'm a very quiet person, I went to maybe 3 concerts as a teen and didn't even experience ringing after. But after my 2016 tinnitus I was careful not to go to loud events, I never went to a club or a loud bar or even parties. I rarely listen to music through headphones and when I do, the volume is very low. I did listen to a lot of music with speakers while cooking or in the car, but my family would always say I'm the one who puts the music at the lowest volume. The only thing I can think of is stress or posture. In 2016, I was a little depressed due to a trauma I remembered from my childhood and I had just taken an important high school exam for which I stressed a lot. And this year I was very stressed about my master's thesis. I was spending all my days at my desk in front of my computer, stressing about whether I'd finish it in time. I have a very bad posture, and used to go see a chiropractor a few times a year. He'd always tell me I have a lot of tension all over my body.

      I also feel like there's something wrong with my right ear in a mechanical way if that makes sense, because of the frequent MEM but also when I yawn, it makes my tinnitus louder. And when I burp (I burp a lot due to my diaphragm being tensed all the time), the air goes into my ears and my right ear makes a weird noise like something is shaking inside. It's scaring me because I'm afraid it'll make my tinnitus worse. It didn't do this before my setback in May.

      So that's where I'm at today, I'm sorry this was very long but I have all these different symptoms and I can’t make sense of them.

      Hoping for some guidance.
      • Hug Hug x 6
    2. Rafaa

      Rafaa Member

      Tinnitus Since:
      Cause of Tinnitus:
      Who knows? I have Patulous ET and ETD + Other things
      Sounds like me, overreactive middle ear muscles. I suppose the cure would be tenotomy of these muscles --- if we are not prepared to wait for the never ending search for hearing regeneration or a cure for the nerve overactivity/damage. My MEM even rumbles when I scratch my head. I get pulsatile tinnitus sometimes, hear internal sounds louder, fullness, voice louder etc.

      I get the burp, but I know the air travels to my eardrum because I have patulous Eustachian tube openings. Sometimes it causes the muscles to spasm, other times the eardrum just absorbs the air normally.
      • Hug Hug x 1
    3. Brian Newman

      Brian Newman Member Hall of Fame

      Tinnitus Since:
      Cause of Tinnitus:
      Shooting/loud noise
      So when you scratch your head, you feel a rumble? What happens when you graze your hand across your ears? Does it rumble too? Mine like contracts, and I feel my middle ear gets temporarily full while the tensor tympani is contracted, then I tense my tensor tympani and it lightens up again. I don’t get random thumping like most people. I feel it moving to sound as well, and it hurts sometimes. It’s probably part of the reason why my noxacusis is so bad.

      Do you get any pain from talking or internal noises?
    4. PixieDust

      PixieDust Member

      Tinnitus Since:
      Cause of Tinnitus:
      @pamplemousse, I was wondering if you received any guidance or if anything has changed for you? I just started with similar symptoms. Also, burping makes a strange rumbling noise in my ear and a lot of sounds make my ear vibrate.
    5. AUTHOR

      pamplemousse Member

      Tinnitus Since:
      Cause of Tinnitus:

      About the tinnitus and hyperacusis, it's gotten much better. I don't think about the tinnitus most of the time and the hyperacusis is very manageable. I live a normal life, I just don't go to bars or clubs.

      About the MEM, it varies for reasons I simply don't understand. I was MEM free for months and I haven't had a day-long episode since last Christmas. When I hiccup or burp now, I hear one or two thumps and then it stops. A lot of sounds indoor can make it vibrate, but sometimes they don't. I went to the best tinnitus specialist in Paris, he said immediately it was MEM, gave me a calcium supplement (Calibronat) for a while which shortened the 24-hour long episodes but didn't make it go away. I've also used low dose Diazepam (2x2 mg in a day) and it also shortened the episodes. Recently, he gave me a nose spray for allergies because the MEM was acting up again (not 24-hour long episodes but sometimes a few hours long) and he said it might be due to inflammation and pressure from allergies. He might be right because since I started using it, the thumps can happen but don't last more than an hour. According to this specialist, it's all linked to muscle tension in my jaw and upper body from stress. I didn't believe him at first, but I realised at one point that if I didn't sleep on the side of the ear that was thumping, it would not thump the next day. So there's definitely a mechanical thing going on. But most of the time, I don't really know what triggers the episodes now, and what makes them long or short. I've never found anything that I can take that stops the thumps immediately.

      You just have to wait unfortunately. It's extremely annoying, I get it, sometimes it still drives me insane and the specialist said if it becomes unbearable, he could do the surgery. I think about it sometimes, but it's also very common for MEM to go into "remission" for long periods of time.

      I hope this will help!

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