condition after taking antivirals

That seems to be a common story. Only about half the people get hearing recovery. However, many of us didn't notice the hearing recovery until many months (years) after taking antivirals, so don't lose hope.

I would recommend that you keep up the lysine at 1000 mg 3x per day on an empty stomach.

 

Yeah, that happens to some. It's a yo-yo the first year. Two steps forward, one step back.

You have to keep in mind that suppressing the virus does NOT heal the damage that it caused. That simply takes time. Think about mono or herpes. Just because you suppress the virus doesn't mean that you are instantly all better. Anyone who has had mono can tell you about the months it takes to get back to full strength. Your ear is the same. The damage has been done, and it may take a long time (or never) to fully heal. But the good news is that the virus won't be causing any NEW damage as long as you keep it suppressed. And your vertigo is gone. That is the most important thing.

You may also have other things going on. Have you been tested for allergies? June mentioned that she got much better after allergy shots, even though the antivirals initially fixed her vertigo issues.

 

The maintenance dose is forever, just like it is for herpes, shingles and AIDS. You stop at your own risk. A couple of folks on here stopped and are still paying the price. Apparently, the second round is much harder to suppress the virus, for some reason.

I will never stop taking it personally until there is a cure.

 

CKDK - was Dr. Gacek good about getting back with you? Where did you get his email address? I started antivirals in November and was doing fabulous until I went to Europe in April. All of my symptoms (minus vertigo) came roaring back after the trip (which I've posted about on this site). I haven't had vertigo since last July though and I had a bad episode last Friday night with vomiting and all! The day before I saw a physical therapist for my TMJ and I was EXTREMELY sore on Friday. In addition we had driven out of town for the weekend about three hours away. I just don't know if I should continue on with the antivirals or not. I've been on the strongest dose now for eight months and I SO badly want them to be successful after reading all of the positive posts on this site. I'm physically and mentally exhausted of dealing with this disease.

 

I do not think it is rare to get improvement in hearing with antivirals. A lot seems to depend on how long and where the earing loss is. In my case they were instrumental in eliminating distortion, autophony, tinnitus and general oddities that had struck my hearing suddenly with the hyrops.

 

TLB,
I am sorry to hear that you are suffering like this. There are so many factors to consider in evaluating this monster. I don't know how long you have been suffering with this beast, but in my case it's been 27 years and it is different today then it was 5 years ago and different from that 27 years ago.

I'm not sure but as we age with this thing it may take different measures of treatment. If the anti-virals don't work try not to despair but just keep pushing for something that does. The following post came from sjw111 recently and as my frustration grows I know I am considering more destructive treatment. I don't know if you are there yet but just try not to despair:

"But remember if that keeps happening....and you have tried everything....you can fix it in an hour surgery. Labys work. Cause you can't have a spin without vestibular misinformation to the brain. No inner ear....no information. Ahhh. Don't put your life on hold forever if you are one of those where nothing works and life is feeling worthless. There is a fix. I am evidence of that. your other ear and brain compensates. A week later I was off and running. Ahhh again."

 

Teesdale - Thanks for understanding! I've had Meniere's for 15 years but only had vertigo since last year, and like you, every day is different. I was doing so so well on the antivirals and I'm just really on the fence as to whether to give it all up or stay the course and hope and pray the improvements return. I know that everyone says that it's two steps forward and one step back, but my frustration is mounting. I would say the antivirals aren't going to work at all if I had had no improvement before my trip, but since I was doing so well, I don't know if that was a fluke or the antivirals were working.

 

I had some recovery of some of my hearing after a few months on antivirals. It got me back where I could converse with people on my "bad" side, which was great.

Sadly, I am losing hearing again since, and it seems to be from some cause other than MM because it is the conductive hearing rather than the sensorineural hearing.

 

Is this your first vertigo attack in 6 months? If so, then it sounds like you're doing a lot better than you would be without antivirals.

Examine your diet. Any nuts, chocolate or other high arginine foods?
Examine your lifestyle. Any new stress?
Are you also taking 3000 mg of lysine daily on an empty stomach?
Have you been tested for allergies or MAV?

There is no harm in bumping up the Valtrex to the max dose for a week again. I do that as soon as I feel off even a little bit.

Good luck!

 

I still have vertigo attacks every month and I am on 3000mg of Valtrex, take Lysine and keep sodium to 1000mg a day. I have been on brand name Valtrex for 7 months. I am worried if I stop taking it I will have even more attacks.

 

It's tough to say. Not everyone responds to it the same way. You could also have MAV or something else?

 

Or the Hiro Theorem could be right and virus (primarily herpes) is a secondary rather than a primary issue?

 

Or they and ither things could be additive piling up til they reach the tipping point and push the immune system too far.