menieres disease

[Dalrympl]

Does anyone else suffering from Menieres find that as they age the dizziness and balance issues worsen? I find it very mentally tiring when having to concentrate so hard when walking. I am also having more neck ache and discomfort

[Linda19]

morning I’ve had Menieres for the last 20 years I’m 66 years old. And I’ve found over the last few months it’s getting worse. I have days when I’m struggling badly, I leave 5 minutes from where I work a few hours. Had to get a taxi as my balance was so bad. I had a nasty fall in the house and had to have 28 stitches across my forehead. So I’m not sure where or not this helped me. Thinking it’s stressing as I’m taking each day slowly. Worrying how the scar going to heal it was only May this year, I don’t want to start taking medication again as I found they make me feel worse. Or it’s the menopause making Ménière’s worse not sure. If you’re feeling like me. It’s so frustrating to feel one day ok. Then the next ear full. Off balance and tired. Hopefully you’ll start to feel your normal self soon. I keep saying to my husband band family…. I just want to feel normal my better self . Kind regards Linda

[Dalrympl in reply to Linda19]

Thank you for replying and so sorry to hear about your fall. It is a very frustrating condition and makes life and planning anything very difficult. Will just have to continue taking it day by day. Take care

[Southeastgirl]

Out of interest...how do you get diagnosed with menieres? Is there a test for it?

[Dalrympl in reply to Southeastgirl]

GP suspected Meniere’s from my symptoms but I had to pay for a brain scan to rule out anything else. This was 16 years ago so things may have changed

[Linda19 in reply to Southeastgirl]

Morning I had to pay private 20 years ago for my test, it only takes a few minutes to get diagnosed. You’ll need to see ear and nose specialist. Your g GP can not diagnose Menieres. Getting very bad vertigo. Even just moving my head slightly I was vomiting. If you think you have this terrible disease. Please see a specialist. It’s very difficult to live with it in the beginning. I didn’t leave the house and had to sleep down stairs for the first 2 years

[Southeastgirl]

Ok that's useful to know, thank you.So far I've been to the GP twice about my vertigo, full ear, nauseous feeling and they've given me anti-nausea medicine. I just didn't know if it started out slowly and then progressed or how this disease goes. My grandma has suffered with meniere's for 50 years I'm wondering too if it is a hereditary thing

[Linda19 in reply to Southeastgirl]

Morning. I daughter who is 40 started having vertigo. She paid private and lucky she’s not got Menieres. Which is such good news, she told her consultant I have Menieres. And he did say it could be hereditary. I’ve asked my family and we can’t find anyone in our family who had it. But yes see a consultant to get diagnosed. I don’t take any medication now. I found that it made me feel worse. And because I was being sick 8 or 9 times a day the medication wasn’t working. I try and do a lot of walking when I can unfortunately I don’t walk in a straight line good luck

[Over60locker]

hi yes I have menieres had it for 20 years I find doing a exercise movement from you tube a help when I have an attack. Finding now at 70 my balance is not so good. I take betistine but wondering if there’s a more up to date medication now . I feel for you not nice at all . X

[Dalrympl in reply to Over60locker]

Thank you for your reply and information about u tube, very interesting. Unfortunately I haven’t heard of any new medication

[MrGC314 in reply to Over60locker]

The latest news on the investigational drug for Meniere's disease is that Sound Pharmaceuticals' Phase 3 clinical trial for SPI-1005 has been completed:

Trial completion: The trial, called STOPMD-3, concluded on July 25, 2024.

Data analysis: The study is currently in the data analysis stage, with interim topline results expected to be presented this quarter.

FDA approval: The FDA has allowed Sound Pharmaceuticals to proceed with an Investigational New Drug Application (IND) for SPI-1005 treatment and cochlear implantation.

SPI-1005 is an oral anti-inflammatory capsule that is being tested to treat Meniere's disease, a condition that can cause hearing loss, tinnitus, and dizziness. The trial enrolled patients in a randomized controlled trial (RCT) for three months, followed by an open label extension (OLE) for six months, and an optional additional six months.

Details of the clinical trials can be viewed online at clinicaltrials.gov or by visiting soundpharma.com.