Greetings to all, I am a new member of this forum, having joined due to a mild hearing loss that I experienced approximately seven years ago. According to my general practitioner, the hearing loss was so mild that it should not have caused any issues in my daily life. However, in May of last year, during a meeting with a client, I suddenly found myself unable to hear anything. I experienced loud tinnitus in my left ear, along with a feeling of pressure and extreme dizziness. The following day, I felt better, but the experience was enough to prompt me to seek the advice of a specialist. During my visit, it was determined that I had an average hearing loss of 25dB, and further tests revealed that my ability to comprehend speech in noisy environments and recognize words was only at around 30%. I sought the opinion of another specialist at the hospital, who initially believed that the issue was an overload on the hearing nerve. A few months ago, I began experiencing tinnitus, pressure, and intermittent moments of hearing loss in my right ear as well. To monitor these moments of hearing loss, I started conducting my own hearing tests using calibrated headphones. I noticed an initial dip around 3kHz, but currently, I am observing a shift towards lower frequencies, along with dips in the higher frequencies during episodes of hearing loss. I assume this is because I am unable to hear these frequencies due to the increased tinnitus. The strange thing is that these episodes last between 1 and 12 hours, after which my hearing returns to its baseline loss. The ENT specialist I visited last Monday stated that this does not align with a diagnosis of Meniere's disease, although I am not entirely convinced when considering the diagnostic criteria. I have not come across cases with a double dip in the audiogram, bilateral temporary loss that returns to normal within a day. For your information, it is possible for the loss to progress from relatively normal hearing to 90 dB in a matter of minutes. The main question I have is whether this could be Meniere's disease. I do agree with my ENT specialist that the symptoms appear slightly different from what is typically described in relation to Meniere's. In a month, I will be visiting a professor who specializes in Meniere's disease, but I am also open to hearing other opinions through this forum. I have attached some graphs depicting the fluctuations I have observed so far (one graph represents my normal baseline hearing loss). I hope to find answers regarding what is happening and what I can expect in the future. It is quite frightening to experience sudden changes in sound perception, where everything sounds strange and incomprehensible. The sound often becomes metallic, as if certain frequencies in the spectrum have been altered. Additionally, I have noticed that despite experiencing regular episodes of hearing loss, I have become very sensitive to certain sounds, such as the sound of a tap, voices, or everyday household noises. No abnormalities were detected during the Vhit and Caloric testing conducted at the hospital. The ENT specialist has confirmed that this also eliminates the possibility of Meniere's disease. However, it is worth noting that online sources indicate that the results of these tests may not always provide conclusive evidence. Are there others here with diagnosed Meniere with normal Vhit and Caloric test results? Lastly, I have recently been provided with hearing aids (Oticon Real for daytime use and a small in-the-ear Oticon device for nighttime use to suppress my tinnitus, which had been interrupting my sleep). These aids have greatly improved my ability to understand people in daily life and have significantly enhanced my quality of sleep. However, due to the fluctuations in my hearing, it has been challenging to properly adjust the settings of the hearing aids. I would greatly appreciate any suggestions on how to optimize the settings when dealing with rapid fluctuations in hearing. Thank you in advance for your response.
Actually, I don't think that is the main question. I think the main question is "What is causing my intermittent hearing loss and tinnitus and how can I fix it?". Meniere's disease is just a label for a collection of symptoms. I suggest you keep a detailed log of diet, exercise, sleep and anything else you may think to be relevant. People tend to spend a lot of energy looking for a diagnosis when the energy would be better spent looking for relief or a cure for themselves. I have had success with both anti-virals and currently major success with diet. Many people have had success following JOH treatment, but not me. Oh, and welcome to the site, there is a wealth of information and helpful people here.
Dear Donamo, I would like to express my sincere gratitude for the warm welcome extended to me. Additionally, I greatly appreciate your overall response. I understand your point. I diligently maintain an episode log and include all previously shared graphs as part of my routine to identify potential triggers for these episodes. Currently, the episodes seem to occur randomly in most cases. However, I have noticed a correlation with certain events. Nevertheless, due to the frequency of experiencing an episode every 48 to 72 hours on average, it is extremely challenging to pinpoint the exact trigger. Before making significant lifestyle changes, it would be beneficial to receive a diagnosis. What if it is not Meniere's disease and I eliminate various factors unnecessarily? As you can imagine, with the frequency of these events, I am already missing out on things enough. Regardless of the underlying reason, this issue is significantly disruptive and has a profound effect on my daily life.
Yes, I certainly understand how disruptive hearing loss etc can be. I have had days where I can hear essentially nothing, even with hearing aids. Very scary, very depressing. I put less value on the opinions of the medical community than you do, I think. I'm a skeptic . It seems that the inner ear just baffles the heck out of them.
Donamo, this closely corresponds to my experience with my initial ENT specialist. They demonstrated a lack of concern regarding the significant impact of this condition on my daily life. Their assessment of ruling out Meniere's disease solely relied on negative results from the Vhit and Caloric tests, as well as one satisfactory audiometric graph. They showed no interest in listening to my firsthand accounts of the daily challenges I face, nor did they prioritize the fluctuating nature of my hearing in their evaluation. Finally, the ENT mentioned that they could not discern a difference between my ears and completely disregarded the fact that both ears are affected by the hearing loss, albeit not equally. I found it surprising that, according to the AAO-HNS 2020 criteria, I do fit into the definite Meniere's category. Fortunately, the difference between my normal hearing and the status of an episode is significant enough to be noticeable. Are there others here who have had normal Vhit and Caloric test results?
Mr. Dutchie, Donamo provides good advice. Like he said, Meniere's is just a label for a collection of symptoms, with fluctuating hearing loss being one of them. My case isn't typical either, the major portion of my hearing loss is in the higher frequencies with mild to just borderline moderate across most other frequencies in my bad ear. If it were me, I'd focus on what you can do, essentially treating it as Meniere's. The easiest non invasive things are change your diet. Low salt, drink lots of water, eat healthier. The root of many problems with Meniere's is believe to be inflammation - inflammation that can arise due to a multitude of reasons. I would focus on reducing inflammation in my body. You have nothing to lose by making these changes, and I see in @Donamo 's signature that he might have gained some stability by going Keto. Again diet related, but by no means the only cause of Menieres.
Dear MrE, I acknowledge that Donamo offers valuable advice. However, I have some reservations about independently making significant changes to my diet. Allow me to elaborate. I have endured allergies for many years and adhering to an elimination diet was quite challenging during that time. Out of the 60 potential allergens, 57 tested positive for triggering my allergies. Although I had the assistance of a specialist at that time, it has made me somewhat hesitant to undertake a complete dietary overhaul on my own once again. Presently, I have discovered a method that successfully alleviates my allergies. I have already eliminated added salt, sugars, and have limited my coffee consumption. Please understand that I genuinely appreciate the advice, but I am cautious about embarking on another extensive dietary transformation by my self, as the potential effects are uncertain. In relation to inflammations, I have recently undergone a comprehensive blood test that encompassed an evaluation of inflammatory markers. The specialist has confirmed that there were no anomalous results that could explain the symptoms I am encountering. However, I am interested to ascertain whether these markers can still be measured in individuals afflicted with Meniere's disease.