thats awesome! and quiet odd, i thought tinnitus was nerve damage. but if a constant tinnitus went away.. then it might be something more.... im glad for you. i wanted to ask you, now that you are symtom free have been able to go to the movies or i mean expose your ears to "normal loud sound" because from what i have heard.. once you have permanent tinnitus you cant expose your ears to loud noises... but then theres the example of ryan adams.... who was menieres and still gives loud concerts...
I'm able to attend live concerts now. In fact, I just took my son to a led zepellin cover band, who were very good btw. And it was loud. But I had no issues and no ringing afterwards. The tinnitus was the last to go after about a year on antivirals.
I dont know you but Im very happy for you tom. im get my further studies to see if i truly have meniers and give anti-virals a try, i cant imagine my life without tinnitus or using salt, sugar again
I just found this forum and am researching anti virals. I've had Menieres for 14 years, but only started getting vertigo this year. Unfortunately, all of the other symptoms (tinnitus, aural fullness, noise sensitivity, hearing loss, brain fog, etc) have gotten worse. I've been getting inner ear steroid injections for nearly 5 years and they have stopped being helpful. My otologist says he doesn't know anything about anti-virals and the second doctor won't prescribe due to lack of research. I feel like I've already tried everything and am so depressed I can't stop crying. Any suggestions on who to see to try anti-virals? I'm so frustrated at this point, I feel like Menieres is ruining my life!
Unfortunately, a lot of doctors won't script antivirals for various reasons. Some know there's no money in it for them. Others are just ignorant. Some are just arrogant and can't believe someone thought of something they didn't. Regardless, the good news is that ANY doctor can script this. ANY doctor. Even nurse practitioners. So all you have to do is call around and ask all the primaries in your area. Some folks are getting it for "shingles" or "herpes", both of which rarely are questioned by a doctor. I actually got this idea from my best friend, who is a dermatologist. He said he has never required a patient to prove they have genital herpes. If they come into his office and say that they were diagnosed previously, he doesn't bother to check up on it because the antivirals are so safe and non-addictive, and he can't imagine anyone wanting to fake it.
Also, a couple of people i know went to a new doctor and told them they have been on antivirals for years and just need a new doctor because they moved. Both times, the doctors never questioned them and gave them the script on the spot.
I've had MM for a long time and have lost most of the hearing in my left ear and it has just recently started to affect my right ear and i am really scared that I might go totally deaf. I went to a ENT Dr. here in Valdosta, Georgia - Dr. Phillips - who said he was not aware of the studies being done by Dr. Gacek and the connection to a virus - so I printed out the study results and he read it, and was very interested and asked if he could keep the printout and willingly prescribed the antiviral no problem. I've only been on them a short time now - but the big -spinning vertigo spells have stopped already. I'm still dizzy a lot and have some slight balance trouble - my hearing has not improved yet - but I am still hopeful. There is still a lot of fullness and pressure and my hearing fluctuates a lot from day to day. But over all I am very happy with Dr. Phillips.
Hi river rat, it's great to hear the vertigo has stopped. Everything else took time for me. I would personally stay on the max dose for awhile longer just to see if it helps speed things up.
Hey Scott tom, Thanks for the kind words and advice! I'm actually thinking about switching from Acyclovir to Valtrex when this scrip runs out. I had to back off from the max dose a bit because of the awful loud roaring in my ears - it was almost driving me crazy. It's not so bad now that I have cut it to 2 doses a day. Unfortunately - I am one of those lucky ones who are real sensitive to medications.
Riverrat, when I started a/v and after I didn't see significant improvement in my hearing - but not worse either. Dr Gacek had said that he didn't expect significant improvement for me because my Meniere's was further along. Believe the earlier the a/v are started, it can prevent damage and restore some hearing. For me I still feel like I hear better (need to get another test) but I believe part of that is that I don't have the up/down that typically we have with Meniere's. FWIW, I am on generic valtrex - Northstar manufactured. I had BAD results with Milan.
Hi Scott tom Well I upped my dose of Valtrex and a couple of weeks later started to feel better again. Then another week or so where the dizziness would almost start, but never seemed to. And right now I can feel great. I have pressure in the ear now, but it's not that bad at all. The tinnitus is at a level I can live with perfectly. I can even understand the kids better even. I'm now on 1g of Valtrex a day and I'll see how things go at this dosage. I have to say that my symptoms have always come and gone so it's a case of seeing how things go over the next few months.
I'm on day four of antivirals and am really dizzy. I know everyone said MM can get worse first, but any experience with how long that lasts? I know one of the side effects is of the Valtrex is dizziness also - does anyone know if that is a transient thing or if it means I can't take the drug?! I know I need to be patient, but I'm so frustrated!!
It's quite common to see worsening of symptoms when aggressively attacking the virus. JOH has a good explanation for it, so maybe he'll chime in. Does your dizziness rise and fall with your doses, or is it all day? I personally would keep taking it. Dizziness sucks, but at least it's not vertigo. Maybe take some meclazine or valium with it?
Hi guys I'm from the UK had Ménière's for 3 years now and my doctor has prescribed me with Serc 16 which is a betahistine. I'm still getting regular tinnitus and off work due to attacks at least 3 to 4 times a year. Are these antivirals people are using available in the uk aswell? would like some advise as I feel my condition is not getting much better. Good to see a community to talk to about Ménière's as most don't understand.
Jamie90 - you should definitely be able to get antivirals in the UK- Valtrex is mfg by Glaxo And they have mfg plants all over the world (even one in England). I've been on the antivirals for one week now and haven't noticed any difference yet, but I'm really trying to be patient - although it's very hard! Not sure how long it took most people to see some positive results, any advice would be helpful!
Hi, it took me close to a month before I started seeing improvements, but was closer to two months before I saw a real difference. I still have some symptoms sometimes. I am currently back up to 3 grams a day after a recent set back. I was on 2 grams a day.
I've been on the (for me) higher dose of 1g daily Valtrex for a couple of months now and I've just had a hearing test which confirmed what I pretty much knew anyway. In my bad ear I was hearing around the 55db mark, and now it's around the 25db mark. This is the test where the normal range is from 0db-20db so my hearing is now, give or take, back into the normal range. Also, in my good ear I never hear well at high frequencies and now my "bad" ear is rocking at 4000Hz and 6000Hz so the clarity in what I hear is incredible. I also feel so much better and wake up in the morning feeling like I've slept. The dizziness is gone. The pressure in the ear has gone. The tinnitus is still there but it's at a level where I can easily ignore it. What I don't understand is the total lack of interest in these results by my doctor. This is the guy who a while back was telling me that the meniere's had done its work on this ear and I'd never get that hearing back. And then I tell him I took a few pills got the hearing back and he didn't even bat an eyelid. He told me once that he had patients who hadn't left the house in years because of meniere's and if it were me, I'd want the details to at least tell them to give it a go. But this is what I'd say to all you who haven't done so is yes, just give it a go. Nothing is certain and it may be coincidence that I got better at this time. Also, I believe there are many things that cause the symptoms of meniere's and not all will respond to the same treatment. But given that the side-effects of Valtrex are virtually non-existent it's got to be worth a shot to try for a couple of months at least. Finally, many thanks to Scott Tom for encouraging me to try the higher dose. I've read others "success" stories in the forum and ended up with a whapping great lump in my throat just out of happiness for them, so imagine how I feel now.
That is great news, Beanz! Congrats! Too many of us are having success for this to be a coincidence. I wish it was for everyone, but clearly, some people don't respond to it. However, i haven't read about anyone taking the max dose of Valtrex for 6 months and not having some success. What makes this especially frustrating is that clearly some of the generics just don't work. I would love to know why. I suspect it's poor quality control. The FDA doesn't check drugs like they should, and certainly not like the general public thinks they do. You're right about your doctor. It's shocking that he doesn't immediately call all his patients and tell them to at least give it a try. This just goes to show that the the days of doctors going into the business to help people are sadly over. There are some great doctors left, but too many of them are in it for the money, or just don't care any more about their patients. I suspect that antivirals are not on their list of concerns because there's no money in it for them. They make a lot of money off those tests and surgeries. The ENT i went to wanted to do the laby right away and wouldn't consider anything else. He didn't care that it would end my flying and skydiving days. Fortunately, my current doctor is a family doctor and she's already rich, so she doesn't care about the money. She's been scripting this to anyone who will listen, and last time i saw her, she said she's getting the standard 90% success rate.
It seems that those claiming improved hearing as a result of AVs generally have started them sooner rather than later after diagnosis. For myself the hearing results fluctuate. Good results are followed by worse results, and vice versa. When were you diagnosed with Meniere’s Beanz?
