Drink lots of water friends: Water may cure patients with Meniere disease - PubMed There is also a mobile app that reminds you to drink water. I drink 250ml every 60-90 minutes and about 1L* with each main meal. They serve infusions, coffee, tea, sparkling water, etc. As long as it's sugar-free (and caffeine won't hurt you). Personally, I drink mostly plain water, when I want energy, sugar-free coffee, when I want something to warm me up, ginger, and when I go to the bar during the week, sparkling water and a slice of lemon. Beer and wine only when I go out on the weekends. *I'm sorry, but I don't know the American measurement system. I suppose that on Google you can convert liters to ounces.
Ear has been crashing a bit for the last few days. That said, I have been trying to maintain high lysine)low arginine eating. Question for y'all that are doing the anti viral thing: Have you eliminated flour, whole grain & wheat products from your diet? Apparently corn tortillas are a no as well.... haha. Kinda...
I read about this study shortly after being diagnosed. In the early years, the wife was all over me about pounding the water upon reading the study. It did not do much for me, but I still continue to consume large quantities throughout the day. Keeps things rinsed out! And, I do not consume caffeine or alcohol. Caffeine is a definite trigger for me. I will drink decaffeinated coffee(Swiss process) truly caffeine free. Have a great day!
Just for pure tone thresholds and to track changes. It’s very unscientific, but being able to track the delta is good enough and it does that for me. I use hearingtest.online. My hearing is crashing today, for the first time ever even I don’t sound normal. I could cry.
Thanks for the info, Brother. I'm gonna give it a try. I feel for ya in regards to the hearing. Ear was doing great for awhile, but back to being a bit full and noisy. Was gonna try and kill the wheat in the diet, but I don't know. I don't eat anything now! Haha!! Take care
I just completed my first three months. The audiologist said I had a slight improvement in my bad ear. Her exact words were, "Your hearing has improved but not as much as we’d like." Ah well. I got another three months' worth, so we'll see how that goes now. The hardest part for me was that when I started the trial, I was feeling pretty okay. I started JOH last July, and since November, I haven't had an episode. So, rolling into this study in April, I was feeling as good as I've ever felt. So, is it doing any good? No idea.
@bazookaman , I went almost 2 years till all chaos broke loose last November, so I'm the opposite. I was bad coming into the trial. Also, I have heard from others that they did not see much ear improvement till after 90 days or so. My 90 day exam showed slight improvement in bad Ear. Nothing huge. No dizziness or vertigo, so I'm very happy with the drug to date. See what the next 2 months look like. Good Lord willing I get extended. If not, still happy to be part of the trial. Take care, Brother!
My last test indicated a 5db improvement in my bad ear across the mid range. Not much, but something.
As an old friend used to say while golfing "doesn't matter how far you hit it, all that matters is that we progress towards the hole!" I think that philosophy would apply to us haha!
Just want to clarify, given all the talk about hearing tests with the trial -- are we anticipating that SPI-1005 can actually restore hearing that has been lost in the distant past? While we all hope for improved hearing, I'm curious about the drug's capacity to regenerate hair cells. My understanding was that it primarily works by halting inflammation to prevent further hearing loss, vertigo, fullness, etc.
Tomorrow is my last day of the 6 month trial. No improvement of any symptoms. I am curious to see if I have any better hearing in my good ear. I have the option of getting it another 6 months. I will decide tomorrow. I am very disappointed in this drug.
Hello, I think why it would improve hearing has not been explained, it is possible that they will do it after the rehearsal or it is possible that they do not even know. Sometimes when testing drugs they detect changes without knowing exactly the mechanism that causes them. One theory is that by acting as an anti-inflammatory and antioxidant in the ear, the damaged, but not dead, hair cells could still regenerate when that inflammation disappears. That would explain why some patients do not improve their hearing at all, others a little, and others a lot, since it could simply depend on the number of dying but still alive hair cells. I'm sorry to read that Yellow, let's see what they tell you tomorrow in the Study about continuing or not with the medication. They know best if something can still happen after 6 months or not. I wish you the best friend.
Happy New Year to everyone! Does anyone have any news? Is the study still ongoing or have they already finished and are now processing the data collected? Will we have the medicine on sale in 2024?
It's still ongoing. Many of us have been renewed to receive the drug another 6 months. For myself, I visit the clinic on January 10th and they've already confirmed that I will be part of a 6 month extension. Does that mean it's possible that the drug could be available in 2024? I don't know.
I am in the study until October 2024 so I doubt it will be available in 2024. 8 months on it -so far it has done nothing for me.
I had my 6 month review yesterday with some interesting results. Audio testing: from first test to now, bad ear has improved. Not huge, but improved. My good ear which was basically normal, improved a lot! Interesting to say the least. FYI: I have been dealing with above average tinnitus and ear fullness for the last week. Dizziness: not much of an issue. I believe around 2nd month on the real drug, dizzy issues started to diminish. Vertigo: From day 1 on the real drug through end of 5th month, no vertigo. I had a few 15 sec drop type vertigo attacks when I started taking Lysine. I know it was the Lysine causing it, as it was the same day. Also, after taking it, I would feel weird. I am still on the 3 gram daily Lysine and have not had any type of vertigo in the last month. It slowly diminished with the Lysine protocol and maintaining SPI-1005 drug therapy. Keep in mind in regards to vertigo, I was in a bad Menieres phase up till the first dose of the real drug. Immediately took out vertigo, but got dizzier for awhile. Ear issues, Tinnitus etc.: Hyperacusis has diminished. Tinnitus has good weeks and bad. Still know it's there! Ear fullness better with exception of this week. More noticeable after Christmas. I am very impressed with how my 6 month review was conducted. I was examined by the medical director sponsoring the drug trial. We went through each hearing test, listened to my concerns, questions, etc. Ivan, I asked especially for you in regards to drug approval. He told me that he had no idea and it would be determined by the by Sound Pharma, data results, etc... Same thing everyone else is probably hearing. The odds of me making the cut for extension in the beginning was unlikely. Due to several people dropping from trial, I have made the year extension. I am thankful because it is making a difference for me. No, it's not a cure all for me, but its helping. I would say most days I am 80% improved. Most days ... If the Tinnitus was gone, I could go higher ... Hey, if It keeps the crazy vertigo away and I can work in the shoph It's a success for me. Time will tell. I hope and pray it gets approval soon! All of those suffering from this chaos are in my thoughts and prayers. We shall see what the future brings.