I'm posting my current situation and would love any input! I was diagnosed several (10+?) years ago. Put on triamterene/HCTZ and potassium (after my potassium levels tanked). I was having hearing loss but no tinnitus or ear fullness at diagnosis. Began eating a low sodium diet. I discovered JOH a few years later and followed the regimen for a year, didn't see any difference in my hearing, and slowly tapered off the meds. Fast forward a few years and suddenly I am having worsening tinnitus and ear fullness for the first time. Caffeine had never seemed to be a problem for me, but recently it has seemed to make symptoms worse. In addition, I've started to have some GI issues with gluten. So will be limiting both, if not eliminating. Restarted JOH regimen, but I'm not sure if I should be too hopeful since I didn't see any difference the first time around. Willing to try it though. Thankfully I have never had vertigo. I've done a lot of reading of the forums here and in addition, I am planning to start B5/B6, increase my D3 and add K, start magnesium, and I may try the high dose Vit C approach. I'm really worried about losing hearing and acquiring tinnitus permanently! I will start the new portions one at a time in case of negative effects.
I have maddening tinnitus and fullness and lately my fullness has gotten worse. Was diagnosed in 2019 and my tinnitus is a roaring 12 on a scale of 1 to 10 ——24/7. I have tried most of what you are trying with no success. . Was tested allergic to gluten, but i never tried stopping gluten because there’s not much to look forward to in life once you get this damn disease
I am doing the JOH regimen right now. I've been doing it for about a month now and would say my ear fullness, loss of hearing, tinnitus and dizziness are all worse than when I started. I try to stay low sodium and low sugar but with the holidays in full swing I have not been as good as I could be. I think I'm going to keep up JOH for a few more months just to give it a fair shake. I'm not sure what I'll try next. My tinnitus and ear fullness are driving me absolutely batty. Please let us know how your new approach is going. Best of luck to you.
I suspect you are aware of this, but John has said it is common for symptoms to get worse when you first start the JOH Regimen. Mine certainly got worse before it got better.
Thank you for telling me of your personal experience, it helps me to keep going. I did read his entire post about how some people do get worse before they get better. I just had a week long setback due to a vertigo attack so I could not take any pills. Hopefully I can start them again soon. I think part of my problem might also be holiday time eating, seems like I always have a major attack right around now. Have a great holiday season