spi-1005

[Topgun22]

hi has anyone heard of the clinical trial in American for spi-1005 ? They’ve just completed phase 3

[MAC0811]

I’ve not no, sorry, but if you find anything else out (!!??) about it please let the group know! It Could be a very important development yet? Cheers.

[Topgun22 in reply to MAC0811]

I know this is what I was thinking !!

[TinnitusUKPat Partner]

The last update from Sound Pharma, as you may be aware, was in December 2024 and concerned use of this medication in the treatment of Meniere's Disease - they're reporting on outcomes from trials in February 2025 at an Otolaryngology conference in Orlando.

There is an open trial listing on ClinicalTrials.gov for the same medication, aimed at people using cochlear devices, which isn't yet recruiting.

Press release - soundpharma.com/sound-pharm...

[Topgun22 in reply to TinnitusUKPat]

Hi thanks for the info , it’s interesting for me as my tinnitus is from Ménière’s disease let’s hope they have some good results !

[Timmycat in reply to Topgun22]

Hello Topgun22 How was your Ménière’s disease diagnosed. Started with Tinnitus October 23 and I now have episodes of severe dizziness. Went for balance tests which I would not want to repeat. Any help you can offer?

[Topgun22 in reply to Timmycat]

Hi there , so a few years ago I had episodic vertigo tinnitus and a blocked ear this would happen then settle after steroids so fhe dr thought it was an ear infection , Anyway a year later or so I would get the same again and again would be given steroids and it would clear up , however I then got the tinnitus and blocked ear for a much longer period a month or 2 the doctor couldn’t find anything wrong and I was sent on my way , then came the vertigo , was having vertigo attacks every day for weeks , went to ENT and due to my hearing being fine I was not diagnosed at that point , however the symptoms persisted went to the doctor again and they said we think it’s suspected Ménière’s disease and prescribed me Betahistine while waiting for ENT again , this next time at ENT my hearing was terrible and I was officially diagnosed. I don’t know if this is similar to you or not but this is how it happened for me.

[Timmycat in reply to Topgun22]

Thanks for replying, it’s appreciated. I had a balance test where warm air was inserted in my ears, had to follow various shapes with my eyes & not move my head. Bizarrely the nurse said at the beginning I would experience dizziness and maybe nausea which was perfectly normal. This certainly was the case in my right ear but nothing happened with my left ear, the side I have tinnitus. To be honest I never asked for explanation as I felt so sick. As yet I have had no diagnosis, am waiting on appointment. Thank you again,

[Topgun22 in reply to Timmycat]

Do you think it’s menieres that you have ? It can take a while to diagnose , what’s making you think it may be menieres ?

[PABLR]

I also have Menieres. Started with sudden one sided hearing loss in my left ear, and a few years later, for two years I had a number of episodes of vertigo. I had tinnitus, which probably started at about the same time I lost the hearing in my left ear and on the same side. I rarely had the feeling of fullness which is another hallmark of Meniere's. I wasn't diagnosed until years later, almost a decade after my final vertigo attack, mainly because for most of that time I was living in Japan and Egypt, and navigating the system was difficult. Finally when I retired and my hearing loss was in both ears, I was diagnosed with Meniere's. At the time I had it I was never prescribed anything, not even for the vertigo. Later I was prescribed Betahistine, but I don't need it. And being in the states it's not FDA approved so I had to get it from Canada or the UK. I am British, but live in the USA.

[Topgun22 in reply to PABLR]

Sounds like you had not too bad a time of it really if you don’t need the medication ? Or did you suffer during all those years ?