Help with Obsessive Thoughts and Implications of Transtympanic Electrocochleography

Discussion in 'Support' started by tniuf, Apr 17, 2023.

    1. tniuf
      Banhappy

      tniuf Member

      Tinnitus Since:
      1st 2016, 2nd 2022
      Cause of Tinnitus:
      If it's not from meds it doesn't matter, avoid concerts
      My tinnitus started in 2016, about one hour after having a headache. It came with a lot of ear pain/fullness, on and off. No hearing loss, only a notch of up to 20 dB in 4 kHz in one ear. The ENT doctor I saw performed microsuction (very loud but I don't think it damaged me) in one ear, and 2 weeks after the onset of my symptoms he performed transtympanic electrocochleography (not loud) and prescribed Acyclovir and Serc to treat a possible viral infection. Before this test I had started experiencing some exhaustion (10 days post onset, the test was actually booked before I experienced this generic health deterioration), but the day after the test I woke up with extreme dizziness (difficulty focusing gaze, triggered whenever I moved my head, walked, even switching my gaze between two screens at work, trouble concentrating/reading, sensitive to environments with people moving and to the displays of supermarkets) that lasted for 2-3 years (first years were hard, now I can still feel it but it has improved since onset). I didn't experience any pain during the test. Not sure how my tinnitus was affected (as soon as I got the dizziness, I forgot about it). I remember getting a new temporary, loud low-frequency tone, but in general it remained non-bothersome, so if there were any changes, they must have been minor. Later on I also experienced a head "buzzing" sensation after visiting restaurants, which in time resolved.

      At some point I developed minor hyperacusis, but I don't remember exactly how many days/weeks after the test this happened, maybe within 3 months... I know I bought my earplugs 7 months after the onset of my tinnitus.

      A second ENT I saw was shocked that the first ENT performed this test, given my initial symptoms. The second ENT knew what this test was about, they even have it in their clinic, but they didn't mention any possible short/long-term implications for my ears. They diagnosed me with viral vestibular neuritis/neuronitis related to the Epstein Barr virus. He called my symptoms "visual vertigo" and that I should expect to make a full recovery (he also performed some vEMP testing). He didn't associate any of my symptoms with the ECoG test, in his report he mentioned that "subsequently" I developed dizziness. I did not emphasize that the dizziness started 1 day after the test as at the time I didn't associate it with the test, however, I did leave him the reports from the other ENT to study (per his request) that show clearly that during my first consultation there were no vestibular symptoms, and my tinnitus and dizziness deteriorated at the end of the 5 days of taking Acyclovir (despite me feeling I had more energy after taking it) which also happens to be the first 5 days after I had this test done. He also mentioned my aural pressure is of somatic origin, related to my jaw (!). I saw some more ENT doctors but didn't get anywhere (I was still unaware about the relationship of this test to my symptoms). Their audiograms showed the dip to be up to 25 dB in 4 kHz in that ear, which improved to 15 dB in my most recent audiograms. My MRI was clear and a neurologist found no problems.

      3 - 3.5 months post the tinnitus onset I had fever, vomiting and subsequently a severe sore throat. The day after the sore throat symptoms I coincidentally had a blood sample taken which showed I had a recent acute infection with the Epstein Barr virus. If this virus caused my original symptoms, why would I have these new symptoms 3 months after taking Acyclovir...

      My tinnitus worsened badly last year 2 days after attending a loud concert (50 minutes of exposure without earplugs + another 50 minute with earplugs), and it came with very bad hyperacusis, TTTS, ear pain etc. 3 days after the worsening I saw an ENT (5 days after the concert), his audiologist checked inside my ears and didn't mention anything wrong (only some excess earwax in one ear). 10 days after the worsening I saw a different ENT who removed the excess earwax manually and wrote in his report "Examination demonstrated normal tympanic membranes.".

      I'm wondering if it's possible that the transtympanic electrocochleography planted the seed for my worsening? Since it involved piercing the eardrum, maybe this is what caused the minor hyperacusis at the point, and not the original problem - whatever it might have been? This noise sensitivity never left properly, but it was not bothersome so I didn't pay attention to it, and wore earplugs only whenever I attended a loud wedding/bar/club (so very rarely). I've seen other people get a worsening after many exposures, but this was my first concert in a stadium. I was a regular user of earbuds though and many times had them above the 50% volume, but it never sounded excessively loud to me. Earbuds should block some external noise, so one wouldn't need to have them louder to compete with external sounds. A few months before my worsening I experienced the first spike in many years, high pitch intrusiveness, which only lasted 2 seconds so I didn't pay attention to it. I would also very rarely get pain in my ears, similar to what I experienced during the onset in 2016. I remember getting this pain a few months before my worsening as well, randomly; it may be the Tensor Tympani muscle, maybe indicating that it's struggling, hence I should avoid loud places. If it was an injury to this muscle during the concert (I remember at some point I felt an instantaneous pain in my ears), then perhaps this test would be unrelated to my latest injury.

      People on Tinnitus Talk have done multiple intratympanic injections but they haven't reported any noise sensitivity afterwards (@El BUZZ I believe did 9 per ear), while I've seen reports of noise sensitivity/hyperacusis after an eardrum rupture (case 1, case 2). So it's not clear to me how any intratympanic procedure is different to an eardrum rupture, to me both sound like an injury? I am focusing on the noise sensitivity as this may be the actual risk factor for an acoustic trauma, but of course nobody clearly understands these issues very well. Another thing I don't understand is how did transtympanic electrocochleography give me chronic dizziness if I haven't seen people reporting chronic dizziness here after intratympanic procedures, just temporary dizziness. The needles used for transtympanic electrocochleography may be bigger... My guess would be the agent used to numb the eardrum went through to the inner ear causing damage? Or a rupture to the eardrum could cause chronic dizziness? And why did the 2nd ENT doctor not spot it as a complication...

      Ever since making this association between the transtympanic electrocochleography and my past/current symptoms, I've been struggling immensely (on top of my tinnitus struggles), with lots of anxiety/panic attacks, heart/chest pain, obsessive intrusive negative thoughts, reliving through what happened during my initial consultation with that doctor, thinking what I could have done differently, fearing for having incurred permanent damage to my eardrums/ears, feeling victimized and taken advantage of as I hadn't understood it was going to be an invasive test and was not informed of any possible complications/side effects. Next day dizziness is too big of a coincidence. I've been tormented by these thoughts, the psychological burden is very painful. I had nine sessions with a psychologist but she was of no help to alleviate any of my distress so I had to stop her.

      I'm trying to get over these obsessive thoughts and divert my attention to something less painful. During night time they are at their worst as they don't let me sleep. Before my worsening I was habituated to my dizziness and was happy. Now I'm struggling thinking how before seeing this doctor I had mild symptoms and after seeing him I had chronic dizziness (plus since last year intrusive tinnitus).

      I'd like to ask what people have found useful in overcoming these obsessive thoughts (no meds if possible)?

      Trying to think of a happy moment in my life in order to sleep is very difficult as my brain will automatically switch to these painful thoughts. Listening to some sort of podcast is sometimes effective but then my sleep will be interrupted after as fast as 20 minutes later. During the day it's also difficult, going for a walk helps a bit but I continue to have these thoughts during my walk. My family told me I can't know what exactly happened in 2016 so I can't gain anything by analysing it, I can't change the past and to stop talking about it. Yet my brain doesn't get it.
       
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