Out of curiosity, how bad is your hearing? Obviously, you made the cut so it's a greater loss than 30db on one of the lower frequencies. I'm about a flat 45-50 db loss across all frequencies and while that's classified as "moderate" I'm still completely baffled at how poorly I handle the WINs test. It was like the noises were cancelling all sound out. On another note, I've been having a great few days, I'm actually swallowing like a fairly normal person as opposed to a constant "thunk" noise and discomfort. Even if I'm taking the real drug there's no way that it's had that effect as I was feeling that improvement prior to starting the trial. However, I did switch to Famvir a week ago...
MrE, I have significant loss in left ear. Right is normal. since my last series of attacks Nov 22' through Feb 23', I have had extreme hypersensitive hearing in left ear. Pans banging could bring me to my knees. The last 2 weeks, left ear is back to remission phase. Still have a hard time with specific tones, etc, but sensitivity gone and hearing improved somewhat. Tinnitus still there of course. Last remission phase lasted a little over a year. Bizarre disease for sure.
Remission phase is my name tag for vertigo, balance and pressure that goes away for a significant amount of time.
Thanks for sharing. It's amazing how we can have what I suspect to be similar levels of hearing loss yet perform so differently in different tests. Very strange indeed.
Folks, FYI - there is a Menieres Support Group on Facebook, and there are some very positive posts from people who have been on the drug in the trial. Check it out !
I experienced those wonderful times of symptoms remission for the first 4 years of my MD journey but sadly those days are gone & any symptoms flares at this point only serve to reduce my hearing further. I've mentioned this before, but in spite of the fact I'm nearly deaf in my left ear (my ENT said the left ear is the one most commonly struck by MD...interesting, eh?!), I still have hyperacusis in it. I have to carry earplugs w/ me as loud sound/noisy places make my tinnitus scream. Thankfully, I have an easy way to protect my ear.
One week update Nothing really new to report. My symptoms have not really improved just yet. It’s important to note that I’m also in the midst of my worst flair up of symptoms that happens to me this time of year. Every April at the height of the pollen season I get really bad tinnitus, pressure and hearing goes down. This was confirmed on my audiogram at the trial on my visit last week before i started the medication : hearing went from 40db in low tones in March to 65db just last week. But I knew it would be that way. Unfortunately the medication hasn’t alleviated any of those symptoms just yet, but I know it’s still early. At my baseline or when things are going pretty well, I have very minor to no tinnitus at all. I always have some aural pressure, but nothing like where I’m at with it now. And my hearing when I’m stable is usually around 40db give or take, in low and high tones. Right now things are markedly worse. I’ve had some minor side effects from what I believe is the drug. Dry mouth, some fatigue, minor lightheadedness. I have a history of being very sensitive to side effects of new meds, so I’m not surprised. Again these are pretty minor, but I did report them to the study. I will post this time again next week, or sooner if any symptoms start to improve at all.
After reading the various posts about SPI 1005 I did a little checking and inquired with one of the site locations participating in the trial. They, too, were accepting a couple of additional candidates and I signed up to participate with the assessment scheduled to take place tomorrow 4/28. After reading through all the information I thought I would likely qualify. My only question was the fact that I had a ventilation tube in my Meniere's ear right now. The screener didn't think it would be an issue and was to check on it earlier this month. I don't think that probably happened. I received a call late this afternoon indicating the site had checked with the primary leaders of the study and the tube insertion is being considered middle ear surgery and disqualifies me from participating. Pretty bummed this afternoon because I was pretty excited to be able to participate. I hope all of you able to participate get some great, positive results to help you.
I had my 2nd evaluation visit yesterday. And by failing my hearing test, I passed. So I got my bottle drugs/placebo and took the first two this morning. Here we go!
that is a real bummer. what is the ventilation tube? I have an ear tube for dexamethasone injections...
I must say, I am very envious of the 4 of you in the trial. Is it now closed? Does anyone have a phone number or responsive email address, I did send an email but no response
Yes it's important that we try to find hopeful things to say....like someone here wrote that Betahistine helped their vertigo! Has anyone had any luck with L-Lysine helping the tinnitus (JOH regimen)
I just turned 68 and got it age 65. I am also becoming a recluse, one of those who cannot tolerate the whooshing tinnitus and other strange feelings/rumblings in my right ear. I wonder of those who get it at younger age are more resilient?
KathyH, My trial location said they were closing it at end of April. Not sure if that covers all locations. I have tried L Lysine. Didn't seem to do anything for me, but only took it for 6 weeks. Now that I am in the drug trial, I will hold off with anything new until it's conclusion. Praying for positive results for all.
The trial closed April 30 at all locations. My clinician told me that it was supposed to run till the end of June but since the FDA put it on fast track, the drug company wanted to end it earlier, hopefully to get it to market earlier.