found this on clinical trial: SPI-1005 for the Treatment of Meniere's Disease - Full Text View - ClinicalTrials.gov
I'm glad you have a reason to keep going & not give up. Dogs are seriously "man's best friend". I'm without one at the moment so I dog sit for friends to get my "doggie fix". One day the right dog(s) will cross my path & I will no longer be "dogless". Tinnitus is not fun. Mine wakes me up during the night sometimes. I got a hyaluronic acid injection in my left shoulder today to try to deal w/ shoulder pain that cortisone didn't touch. End result - shoulder pain has eased, but the injection ramped up my tinnitus & inner ear pressure. Sigh...Totally sympathize, yellowboy.
This is great. I'm going in on Friday to get evaluated. The lady at the office signed me up despite it being tight with scheduling. She said b/c it was so near the deadline, they weren't really looking to take on more people. But she found me a spot. Thankfully it's only a 30-minute drive from my house. Hopefully, I won't have to stop taking my JOH supplements. I REALLY don't want to go back to where I was!
Not to worry you won't have to stop taking any supplements. I'm on Valtrex and that doesn't even exclude me from the study.
Congrats Bman for getting in at the last minute MrE, glad you got there safe! I travel over the mountain early tomorrow morning for my first appointment. Pumped to get going with this trial!
A quick update from me - I'm now officially in the trial and took my first dose of whatever I got today. Frankly, I knew it would be a tough day, but I underestimated the mental toll it would take on me when you have results of some tests clearly visible to you. The Words in Noise (WIN) test was brutal, they even mentioned that they never do it, it's a special request for this study. I literally, just shook my head and threw up my hands in exasperation during that test. It's interesting that in the past I had very good word recognition in my bad ear, but the WINS test is something else altogether. It was honestly like they ran a completely different test than what they ran in my good ear. Not good for my mental state to score zero on that test. For those of you interested the site in Boca Raton is still taking registrants and I'll provide any updates to my condition as this month plays out.
How long did all of the testing take? And... Did they do the blowing warm/cold air in the ear test? One of my favorites haha. Glad you made it there and back safe and sound!
I was there for 3 hours total. I'm told the next session is about 2. They went through my entire case history to confirm eligibility, took blood, weighed me etc. There was a lengthy questionnaire that they walked through regarding my symptoms, impact to my life, suicidal tendencies - basically everything related to this disease. Of course they did a very thorough audiogram as well that did not include the test you refer to unless you're refering to the pressure test.
3 hours is not too bad. I don't know the name of the test. I do know that warm and cold air were blown in each ear. Was a bit dizzy after. We shall see. I shall post up the results of my upcoming adventure in the next few days!
The WIN test sounds like the one I get every time I get my hearing checked. It is very annoying. Unless the audiologist has the sound cranked up to a level that hurts in my deaf ear, I can't understand anything either. I totally understand how you feel, MrE! Really glad you've gotten your medication & are home safely. Now the fun begins, or not!!
Safe travels for you tomorrow, Mark55. Wishing you light traffic, no ice on the road, & the real drug!! Looking forward to what you have to report after your first visit to the trial center tomorrow. It will be interesting to compare your experience to MrE's. P.S. I've never had the warm/cold air test. Do you know what it's supposed to reveal?
I get the actual drug 2 weeks from today. I am trying not to get my hopes up, just in case it doesn't work, or work well. It would be nice to hear some positives from those in the study ,at either the "surprise" bottle or real bottle stage !
The SPI-1005 exam and testing went great! Everyone there was extremely helpful in answering my questions. The hearing test went well until repeating the words with the background chaos. Did ok till midway through. Shrugged my shoulders and laughed. Not hearing that! Haha Anyways, made the cut. Got my check and drug or placebo. I was there 2 1/2 hours. Great experience so far! The warm/cold air is referred to as the VNG test. It is one of the tests that can be used when checking for Meniere's. It tests the balance of the inner ear. Side effect can be vertigo during the test. I had a slight vertigo episode from it 5 yrs ago
MrE: Amen, Brother! And so it begins... I am glad we have several on here participating in the trials now. Looks like Yellow boy is the farthest along on here, or am I missing someone? Ok, going to pop the first dose of who knows what. Haha
Daniel is 1 month ahead of me. He said he would be posting an update at the end of April. Daniel ???? Any good news ???
Took the actual drug yesterday for the first time. Nothing really to report just yet. I’m in a bit of a trough with my symptoms for the past 7-10 days, so obviously looking forward to any improvements. I’ll post something in about 1-2 weeks or sooner if symptoms start to improve at all.