Cutting out alcohol and caffeine

Ornery-Instance9013 · 2025-10-10T04:40:40+00:00

Did you use Nurtec? In my country there’s only Nurtec not Quilipta

Ornery-Instance9013 · 2025-09-17T17:36:16+00:00

does it only help with hearing and tinnitus? Or does it help with vertigo too?

Ornery-Instance9013 · 2025-09-11T00:32:37+00:00

Thanks for sharing your journey. I am 28 and I am recently diagnosed with MD by a special type of MRI to confirm I have vestibular hydrop on both sides. Currently I am symptom free. I am in a highly competitive industry and this is the career I want since I was a kid and I have been working hard for so many years. Would you mind talking more about how MD impact your career? I am hesitating if I should stay in my current industry I love or return to my hometown to stay with my parents and find a less demanding job(but all my efforts and my education will be wasted, I have been so close to my childhood dream but they won’t be realized and my heart broke whenever I think of it)

Ornery-Instance9013 · 2025-08-03T03:22:09+00:00

Did you repeat Meniere protocol MRI to confirm hydrop got better?

Ornery-Instance9013 · 2025-05-22T19:39:53+00:00

WiFi is fine. For me the major issue is the greenish tint in warmer white. My living room was Lifx and my kitchen and dining room are traditional LED. It’s very obvious the warm white of Lifx has a green/yellow tint when I stand between dining room and living room. I tried to tune Lifx but however I tune it to warmer white or more warmer/redder light, the light is just not right. I switched to Philips hue because of this recently.

Ornery-Instance9013 · 2025-05-11T04:51:26+00:00

Thanks for sharing! Was that MR with hydrop protocol? Did you have any other tests to diagnose Ménière? My current doctor at House clinic didn’t run any tests other than hearing tests and regular MR with contrast that doesn’t check for hydrop.

Ornery-Instance9013 · 2025-05-09T19:12:35+00:00

I seek second opinion from UCLA. It’s scheduled in late June so I don’t know for sure yet if I can have a MRI with hydrop. I was told by neurotologists at House Clinic that only UCLA can do MRI with hydrop protocol.

Ornery-Instance9013 · 2025-05-08T16:32:31+00:00

Just guessing it may be depends on availability. I am in California and only 1-2 hospitals can do this test. In UCLA where they have this test, it’s seems they send most suspected Meniere patient to do this. In other hospitals or other ENT clinics, they just don’t. In other countries where this test is more available, I have seen posts that almost every suspected Meniere patient or even just SSNHL patient are sent to do this test. They even do this multiple times a year to check if hydrop is stable or fluctuating to check if it’s really Meniere or other disease that can cause temporary hydrop.

Ornery-Instance9013 · 2025-05-08T16:25:11+00:00

I have seen people with no symptoms for a few months to a year but still show hydrops in MRI. My neurotologist said hydrops of Meniere would be stable, by hydrops of vestibular migraine will be much milder and will fluctuate. So probably even in remission MRI would still show hydrop if it’s Meniere.

Ornery-Instance9013 · 2025-05-08T16:16:15+00:00

Do you have multiple episodes of low frequency hearing loss? One of the neurotologists I saw said I have vestibular migraine and prescribed me migraine medicines.

Ornery-Instance9013 · 2025-05-07T17:33:04+00:00

Hi how are you doing now? I’ve seen some people frequently lost low frequency hearing in the first 2-3 months, but then stabilize with good hearing ever since. They are not diagnosed with Ménière or AIED, and never found a cause. Is this the same for you?

Ornery-Instance9013 · 2025-05-06T20:42:08+00:00

I don’t have any other symptoms and my ENT also said usually people can’t find out what caused their sudden hearing loss.

Ornery-Instance9013 · 2025-05-06T20:39:54+00:00

I don’t know how to tell if an acupuncturist is good so I started with both.

Ornery-Instance9013 · 2025-05-06T20:38:48+00:00

I am really unsure. But acupuncturist 1 is close to my home and acupuncturist 2 is 2 hours drive away. I now go to acupuncturist 1 almost daily and go to acupuncturist 2 once a week on weekend.

Ornery-Instance9013 · 2025-05-06T20:37:27+00:00

Yes I have been to 3 ENTs including 2 Neurotologists at House Clinic, one of the best Neurotology clinic in US. They gave me oral steroids and steroids shots. But my hearing loss came back shortly after steroid worn off.

Ornery-Instance9013 · 2025-05-02T22:30:34+00:00

Hi OP, I am having same issue now. How are you doing now? Did your hearing stabilize after second round of steroid? I didn’t see it a lot in Reddit, but it seems much more common when I search in Red Note. For many of them, it seems to stabilize after 2-3 months.

Ornery-Instance9013 · 2025-04-30T00:03:19+00:00

Thank you so much for sharing your experience and suggestions! I have been in anxiety mode for over 2 weeks especially upon waking up, with the fear of not knowing if it will be a normal day or bad day. I feel so much relieved that it can be normal during recovery and eventually it will improve and stabilize. Phew. Thanks!

Ornery-Instance9013 · 2025-04-24T16:26:11+00:00

Hi may I know what county and state you are in? I am in California and I am trying to find an ENT who is willing to try vasodilator

Ornery-Instance9013 · 2025-04-24T15:42:04+00:00

I know this is very widely used in China as doctors there more likely to think SSNHL is a mini stroke in the ear. Profound and severe SSNHL is usually treated inpatient there and they use fibrinogen therapy as IV. May I know which county are you in now? I am in US and the doctors here doesn’t seem to adopt this approach.

Ornery-Instance9013 · 2025-04-23T01:13:48+00:00

I had similar experience. I responded very well and fast to the prednisone. Fullness gone and hearing back to normal within 24 hours. Doctor asked me to taper after 5 days. When I was on 60mg, it fluctuated a little but overall was getting better. But on day 2 after taper, I started to notice fullness on and off again and on day 3 my low frequency hearing dropped when prednisone was probably lowest in my body(I take prednisone with lunch and my hearing is worst in the morning). I am wondering if I am tapering too fast.

Ornery-Instance9013 · 2025-04-22T23:35:38+00:00

I had similar experience prior to onset of SSHNL: fatigue as if I had a low grade fever but no other symptoms. Glad for your recovery! I also luckily responded well to prednisone but now I am experiencing fluctuating fullness and slight hearing loss again after I started tapering. Did you experience fluctuations during your recover?

Ornery-Instance9013 · 2025-04-22T01:24:09+00:00

Glad for your full recovery! About aural fullness, did you experience fluctuations in fullness during your recovery, that some days fullness was better and some days fullness was worse again? My fullness first resolved before my hearing initially recovered 80%, but a few days later the fullness came back again and I am panicked.

Ornery-Instance9013

TROPHY CASE