r/Menieres

Sound Pharmaceuticals have developed the first treatment for menieres (and other inner conditions) this is an update from April 2026 for those that are unaware.

-Ask your doctor about it. Make a fuss. The more demand the faster the approval will be.

Pencil in maybe the end of 2026 or 2027 for US release and ROW thereafter. Certainly well before the end of the decade. Patience is key.

We live in amazing times, chances are this disease will be successfully controlled in just a few years.

Summary: SPI-1005 (Ebselen) Status Update (April 2026)

The Big News: SPI-1005 has successfully met its primary goals in Phase 3 clinical trials (STOPMD-3). It has officially been shown to successfully treat Meniere’s Disease by significantly improving low-frequency hearing and speech discrimination compared to a placebo.

Current Status:

FDA Breakthrough Status: Following the trial's success, the FDA granted SPI-1005 Breakthrough Therapy Designation, fast-tracking it as a potentially groundbreaking treatment.

Safety Trials: A final long-term safety study is currently active to support its use as a chronic or intermittent treatment. The trial patients need to take the medicine for a period of 12 months or more to assess safety (any side effects etc..).

Availability: While the medicine has proven successful in trials, it is not yet on pharmacy shelves. The safety study is expected to conclude in December 2026, which is the final step before the FDA can grant full approval for prescription use.

How it Works:

Unlike traditional treatments that only manage symptoms, SPI-1005 targets the underlying neuroinflammation in the inner ear.

By mimicking a natural enzyme (GPx), it protects the ear from damage and helps restore auditory and vestibular function.

Hey folks,

Just got off the phone with my ENT who told me that my MRI was normal and I don't have hearing loss, but that, because of my tinnitus and dizziness attacks (the early ones lasted months, now they last a week or a day), I probably have Meniere's disease. I was concerned and asked if this would lead to hearing loss eventually, and he categorically told me that Meniere's disease doesn't cause hearing loss and that it isn't a symptom of the disease.

It was my understanding that hearing loss was a pretty key part of the disease.

Now I'm not sure if I trust his diagnosis at all. I want to actually know what's wrong with me, not just be shrugged at and told 'it's probably Meniere's disease, who knows lol.'

Update: thanks for the replies folks, I'm definitely going to seek a second opinion! I thought it didn't sound right, and I'm glad to know I wasn't just being paranoid. I'm also going to look into vestibular migraine as an alternate cause since I have chronic migraines.

I’m am just here to vent a little. I (23f) just got diagnosed with Ménière’s disease a couple of weeks ago by an ENT and was referred to a neurovestibular doctor (i think that’s what it is called) my referral got triaged as a regular urgency so my wait time after asking the office is around 18 months…

I have dealt with rather sudden hearing loss in both ears and it feels like every day I am losing the ability to hear every day noises. I am very afraid that once I finally get into the specialist my hearing will be worse and it will be very hard to gain any of that back.

I was advised to start a low sodium diet, and am on betahistine and just started a diuretic. They seem to be helping the vertigo severity which is nice and makes moving around much more manageable. But nothing has remotely improved my hearing, I work as a coach and it is getting extremely difficult to hear my gymnasts even a few feet away when we are training on a slower day and even worse on a busier day.

Any suggestions? I will have appointments with the ENT, but he doesn’t feel like he is the best option to fully help with the menieres as he has only treated older patients with the disease and was less concerned about the hearing loss. Should I discuss hearing aids with him?

When you get the feeling of liquid / water in your ear, can you feel it move around ? Like if bend over and stand back can you feel/ hear it move around ? I have this feeling and 100% related to my hearing fluctuations. Almost like swimmers ear ?

Does this sound like Menieres?

Pulsatile tinnitus for the past month

Lightheadedness especially when waking up lasts all day but no balance issues

No hearing loss had a hearing test today although my left ear is worse than my left

Everyday my masseter hurts and my temples pulsate

Neck issues

Tinnitus but had it for the past 3 years along with ETD

Hello everyone.

I'm wondering if anyone here knows of a good ENT that approaches Meniere's disease from a viral standpoint. I already know of Dr. Gacek in Mobile, AL, but what about other doctors?

I have insurance that covers me nationwide, so I am willing to travel long distances if necessary.

I’m moving to South Carolina next month, and some of my symptoms have returned. When I was originally diagnosed about eight years ago, I went to a few ENT’s, who just wanted to operate on my sinuses. I found an audiologist who finally correctly diagnosed me with MD. He put me on a diuretic and ever since then I was fine aside from the hearing loss and tinnitus. Now that’s some symptoms are returning, who should I go see?

Has anyone here tried a Low-Histamine Diet. I have tried so many meds, supplements, IT steroid injections, migraine meds and low sodium diet

Last year I did a couple of sessions with the "Meniere's Dietician". She suggested to try this if nothing else works.

Also the timing of my symptoms pretty strongly suggest that I have a histamine intolerance.

The diet is extremely restrictive. I just thought I would pose the question before I got too far into it.

Thanks

Placing a hand behind the head relieves vertigo and Meniere's dizziness primarily by providing stabilization, proprioceptive feedback, and reducing neck muscle strain. This action helps keep the head still, minimizing the stimulation of the vestibular system, which often triggers spinning sensations. 



Vertigo Detective

 +3

Key Reasons for Relief

Proprioceptive Input & Stability: Holding the head provides a stable, grounding reference point for the brain, reducing disorientation.

**Reduced Head Movement:**Keeping the head still helps stop vertigo, as movement often aggravates the inner ear in Meniere's disease.

**Neck Muscle Support:**Tension in the neck muscles can contribute to dizziness; placing a hand behind the head acts as support, reducing stress on the upper cervical spine.

**Potential Nerve Calming:**The pressure may help calm the nervous system, potentially reducing the intensity of vertigo-related anxiety and symptoms. 

Vertigo Detective

 +4

While this technique can help manage symptoms, it is not a cure for the underlying fluid buildup of Meniere's disease. Those with chronic dizziness should consult a healthcare professional for a tailored treatment plan. 

Make sure feet on floor.