You could be right, even today I was doing an online hearing test and my threshold difference between 1000 Hz and 250 wasn't nearly as drastic as it was yesterday. Yesterday is was something like 30db, this online test is about 5-10db difference which is much more normal for me. Yes, I know online isn't as accurate, but with a threshold gap that large I still think it's somewhat indicative. @Mark55 Enough about me, how did your visit go? For those of you wondering about an extension of the drug beyond 6 months, my clinic shared some interesting info with me today since I was asking when I would know if I'd be extended. Nationally, they're about 65% filled for the extension. For extending, there are a lot of factors which include your previous compliance, and other data. They are stratifying the data, they just don't share how. So even at 65% it doesn't mean that you won't be accepted because you might be a subject that they want to test further due to such things as your location, age, duration of disease etc. My site happened to be the last site added to the trial, but they seem to think that all sites will at least have people extended simply due to covering location demographics. I guess we'll find out, but she did say that multiple people from there site have already been excluded from an extension, whether it be for non-compliance, inability to tolerate the drug, or other factors.
That is good news on the extension. We shall see what the next 90 days bring. I've been out in the marsh all day and getting ready for waterfowl opener in the morning. God is good!
For what it's worth - this is what my Chatgpt shared with me re: Ebselen: Ebselen is a synthetic compound that has been studied for its potential uses in various medical conditions. Here are some of its uses, benefits, and potential side effects: Uses: 1. Antioxidant: Ebselen acts as a potent antioxidant, helping to reduce oxidative stress and protect cells from damage caused by free radicals. 2. Anti-inflammatory: It has anti-inflammatory properties and has been researched for its potential benefits in conditions such as arthritis, neuroinflammation, and lung inflammation. 3. Neuroprotective: Ebselen has shown promise as a neuroprotective agent, potentially helping to protect brain cells from damage and degeneration in conditions like Alzheimer's disease, Parkinson's disease, and stroke. 4. Antiviral: Some studies have investigated the antiviral properties of ebselen, particularly against RNA viruses like the influenza virus and coronaviruses. Benefits: 1. Potential therapeutic applications: The antioxidant, anti-inflammatory, and neuroprotective properties of ebselen make it a promising candidate for the treatment of various diseases, particularly those involving oxidative stress, inflammation, and neurodegeneration. 2. Minimal side effects: Ebselen has been generally well-tolerated in clinical trials, with minimal adverse effects reported. Side effects: 1. Gastrointestinal issues: Some individuals may experience gastrointestinal side effects such as nausea, vomiting, or diarrhea. 2. Allergic reactions: Although rare, hypersensitivity reactions, including rash, itching, or swelling, may occur. 3. Drug interactions: Ebselen may interact with certain medications, so it is important to consult a healthcare professional or pharmacist before taking it concurrently with other drugs. It's worth noting that while ebselen shows promise in preclinical and early clinical studies, further research is needed to fully understand its efficacy and safety profile in various medical conditions. Always consult with a healthcare professional before starting any new medication or treatment.
It seems to me that a lot of the benefits of Ebselen are also available from other drugs and supplements. There are several anti-inflammatory drugs and supplements, same for antioxidants etc. The JOH list covers all these things and more. Anyway, I have started paying more attention to my supplement list somewhat emulating Ebselen.
Has anyone on the trial drug noticed a worsened body odor ? Since I went on it mine is so bad I can't kill it with deodorant of any kind or amount ! Day 162 on it here no improvement at all.
I haven't but my wife keeps telling me my breath is terrible. From a distance terrible, it's that bad she says, like my guts are rotting. @yellowboy have they confirmed an extension beyond 180 days?
Yes, I was told I can go another 6 months if I want to, I go back to the clinic November 1. PS: My girlfriend told me I have to do something about the BO !!
Might as well go another 6 months if they'll let you. I've been trying to gauge when they confirm the extension, it sounds like you knew some time ago. My wife says the same, she keeps saying take a probiotic or something, but I already am!
Yes I am planning on staying with it. My fullness and tinnitus are as bad as ever, worse than before starting the drug.
Off topic, but...It seems that word comprehension is one of the big losses we experience with Meniere's when we can still hear to some degree. I went in for my annual hearing test in Sept. to see if a hearing aid could be helpful. The audiologist said that my speech comprehension had improved because she was able to play the audio louder this year. I argued my hearing loss had increased BECAUSE she could play the audio louder. Last year due to hyperacusis, I nearly jumped out of the chair when the audio was cranked up to the level I could sort of understand some of the words. I urgently requested the volume be decreased (which it was), but at the sound level I could tolerate, I could barely understand any words. This year, I had no hyperacusis so the sound was cranked up loud, & my hearing comprehension improved. In the end, I was told by both the audiologist & my ENT that I'm not a candidate for a hearing aid because it would only amplify the muffled words not help me hear them more clearly. I was also told that makes me a candidate for a cochlear implant, probably in 2024. The cochlear implant will supposedly improve my hearing by 85% in my nearly deaf ear. I'm putting this out there for those of you who've tried hearing aids & found them useless. If you have insurance that will help pay for the cost of a cochlear implant, it's worth considering. Obviously if Ebselen (SPI 1005) becomes available & proves itself to be truly beneficial for the majority of people in the trial that should be the first line of defense.
@yellowboy & @MrE - Super hydrating yourselves could help w/ the body odor & bad breath. I'm talking 80-100 oz of fluid/day - non sugary & non-caffeinated. If plain water isn't your favorite, you can flavor it w/ fruit (i.e. look up recipes for spa water), cucumbers, ginger, cinnamon, mint, herbs, herb tea, etc. It may feel overwhelming to drink that much at first so work up to it, but start w/ at least 60 oz. I try to drink 1-2 cups/hour. If you're already drinking a lot of "clean" fluids daily then clearly this advice won't be too helpful.
So far, no body odor or bad breathe for me. Doing ok with the drug so far. Good enough to go duck hunting last Saturday anyways. Was nice to get out again! I used to take the NAC in powder form in the early years. Maybe didn't take enough. What I might go back on is 180 mg Pycnogenol. We shall see
My word recognition in my bad ear has hovered around 70-80% since symptom onset. In the very beginning it was 100%. My words in noise, which I started to get tested as part of this trial has improved as well. I remember the first test back in April vividly, I couldn't make out one word no matter what the volume. This past time I knew words at the start of the test and then trailed off as it got quieter.
Thank you. I have been guilty all my life of not drinking enough water. My ENT keeps reminding me about it, I will try it. When I first got Menieres I also got prostate cancer so I could not drink allot because I could not hold it, but it looks like I beat the cancer for now.
I'm glad you beat the cancer, yellowboy, now on to the battle with hydration. Drinking a lot helps dilute sweat & saliva which in turn help reduce breath & body odor. If you can beat cancer, you can increase your water intake!!