Update, Diuretic, Low Sodium, Caffeine, Distortion etc.

Hi Everybody:

Its been a while since I posted. I just read a few months worth of posts and see a lot of the questions that I asked when I was a newbie. Now that I have been through several treatments, and am doing well, I figured I would post about what seems to be working for me. AS we all know, we all have different triggers, and react to treatments differently; so, I am not suggesting my experiences will work for all. However, I am posting because I remember my first few months with CH were terrible and I was very discouraged. It is important to keep a good attitude and see what works. I think most of us eventually get significant improvement when we know how to manage the disease.

So here I go.

1. I have only one hearing ear, the one with Cochlear Hydrops. After twice losing complete hearing and only returning to significant low frequency loss, hearing distortion and balance issues, I spent several months on 1500 mg diet and diuretics, no caffeine and no alcohol. I was suffering from severe cramps as well. After each bad bout of hearibng loss, I got steroid injection and high dose oral steroids.
2. I tried a new doctor who told me that he thinks diuretic and very low sodium are not necessary when you do not have full Meniere's (with Vertigo).
3. I went off the diuretic. I stay low sodium, but not crazy low.
4. I am not on JOH, but take Lemon Bioflavonoids twice per day.
5. For the last six months, I am doing much better. The morse code hearing is gone. Tinnitus (mostly) is gone. Music sounds better (not near perfect). I occasionally have hyperacousis (sp?).
6. My old OT told me that the after the three months with low frequency hearing loss, that meant the hair cells were dead and they would not come back. This was false. I think my hearing is the same as before the onset. I will find out in a few weeks when I visit the audiologist.
7. I try to stay low sodium. Just not at 1500 mg. I think my problem was that because I was trying to stay so low, that my CH reacted to fluctuations in sodium when I was maintaining a low level. I have not had a pizza in 7 months. Nor do I plan to.
8. I find caffeine is a bad idea. I can have one 20 diet soda, but if I have more, I find some distortion and some tinnitus.
9. I will have the occasional beer with no problem.
10. Lack of sleep is the single largest problem for me.
11. I don't know if the diuretic helped,but my quality of life is so much better off it. I sleep through the night. I don't get cramps. And the docs were always worried about my kidney function on it.
12. My balance is worse than before all this started. And I am occasionally dizzy. No rotational vertigo.

SO for Newbies. Things do get better. Find what works and then tweek. I have never tried antivirals. Many here swear by it, and that may be the way to go.