My update,,maybe some hope

Hi, I see that you tried all the different meds etc. Did you have no luck at all with them? You say that you were getting on with Procedure options? Can I ask what you have had and has it helped?

 

June, so glad you responded. I wanted to thank you for the information you gave me about Acyclovir. I have been taking it 5 times a day and I think that has helped tremendously. Yesterday the tinnitus was a lot louder than it has been in a week. I am getting used to steps forward and backward. Yes I keep on the regime I have been on since January and have seen so much improve. Of course I would like to see it gone, but I realize that is not happening soon. It does seem the ear is very slowly to heal? Yes I am hanging in there and giving it time. Do you have any experience or thoughts on Olive Leaf. You have no idea, you probably do, how much your info on the antiviral helped me. Thank you!!!

 

Don’t be scared off by my experience- I tend to get the rare side effects to psych drugs. Nortriptyline usually helps people sleep, calms the nervous system etc. For me, I woke up panicking and had nightmares. I only tried it for 1-2 nights.

 

Serc made me drowsy.

Diamox maybe helped - it at least made me feel safer when I had to eat higher salt foods.

Epival maybe reduced the severity and suddenness of vertigo. But was messing with my liver.

Nortriptyline gave me agitation, nightmares, insomnia.

Brand name Valtrex 3000 mg for about a month, then gradually tapered to 1000.

Joh, b vitamins, no apparent effect.

I still take magnesium, B2, coenzyme q10 for Migraine prevention. There are good studies supporting these.

Procedures: I’ve had one gentamicin injection, and may have a second today. I’m vertigo attack free so far. But, as expected, off balance- my brain is gradually compensating.

I’m now off Epival and valtrex. I only take Diamox before restaurant food.

I can’t say for sure at this point if anything helped or not. I’ve had Menieres for over 10 years, with spontaneous remissions (ie I didn’t change anything or take new meds etc) lasting months to 3 years. Recurrences have been equally random.

Relapsing and remitting - makes it very challenging to know if something has “worked” - would I have been the same or worse without it? We need more prospective double-blinded studies.

 

PS I am hopeful that the gentamicin is working.

I’m more optimistic about life than I’ve been in a long time, because even if the the gent doesn’t work, I’m prepared to get a labyrinthectomy.

 

June,
Steve here, from Pittsburgh. I might have secondary hydrops or MM or even labyrinthitis. 6 weeks ago it started. Mild dizziness, out of body feeling, ear fullness, progressing tinnitus. Tinnitus went bonkers 10 days ago. Convinced my ENT to prescribe antivirals based on your long version story from 2014. So first off, thank you so much. Your story was a big part of an answer to prayer. The screaming T backed off to a much quieter sound of crystals shattering. Not pleasant but tolerable if it stays. My questions are what is JOH? Did you take it or do you still take it, whatever it is? How long did you take the antivirals? Did you see Dr. Derebery? Have your symptoms been managed well since you posted your story? Thanks again so much!

 

Glad you are having success, Steve. I never tried JOH. The originator of this protocol of supplements is present on this forum. Yes, i saw DR Derebery for years for allergy treatment. I am doing well and take nothing now for CH and have normal hearing. Keep doing what is working. It takes a while for the ear to heal.

 

Thanks for updating. Great news!

 

Awesome news. Thanks fo the update! I’m glad you’re doing well.

 

Soooooo happy for you!!!!

 

Btw JOH recently posted that he no longer takes the supplements and remains vertigo free. Maybe they act to promote healing when things are active; maybe they are placebo. It would be great to have a proper study done.

I have bottles and bottles of leftover Lemon Bioflavonoid if anyone wants them for free - to pick them up (Calgary) or pay for shipping.

 

Hi yes I have experienced that, I had a couple of months of no symptoms and then when it come back my symptoms had changed so that confused the hell out of my Drs.

 

RGV,

great news. Thanks for sharing your positive results! You give me hope!!!

 

Hi gang,
I could not get in under rgv777 so this is my new name, ronven. I have bad news. After almost 3 years free of Menieres symptoms, it has returned. I am dizzy mostly all day and the tinnitus has increased 2 fold. I started back on lysine, b5, b6 and valtrex as I went off quite a while ago. They say M can come back and they are so right. I am also making a lot of mistakes when working and typing on the computer. No brain fog yet but that was really bad last time under stressful situations Will keep you posted but I'm pretty bummed out. I hope I can at least suppress it again because this is tough to deal with again.

 

Sorry to see you back here Ronven. I am in the same boat. It sucks. Any little stress, even talking to people, ramps things up. Right now we are preparing for our winter trip and it's causing big problems. It can be very depressing to have "beat" it only for it to come back. Then you don't know if it will get better or will it get worse.

 

yes, I agree, just don't know if it will be worse or get better like last time. I'm going to stay the course this time and see if the virus can be suppressed again. Stress or even taking to people def makes it worse. Last time I had to stop coaching because the adrenaline from the competition thru my dizziness off the charts, then brain fog set in and that's even worse. Hopefully, can get back on track sooner than later. Wish you the same. I must have made 10 errors typing this.

 

how long have you been on antivirals now?