Hi everyone! I haven't posted here in a while so this is my first since the new forum started. I have had Menieres since 1999-2000, at least that is when I started to have more serious symptoms. I went bilateral in 2005. This spring I started treatment with Acyclovir after years of trying to get my doctor to prescribe it. He finally accepted due to the fact that long term treatment with antivirals generally now has been okayed with the authorities in Sweden. My symptoms have of course changed over the years. There has not been any really bad vertigo attacks with vomiting for a couple of years now. But everything else was there, "mild" vertigo, dizziness, fullness and tinnitus. Now after five months on antivirals I feel so much better. Some days there is almost no symptoms present, except for a mild tinnitus. Then, a few days come with some fullness and hearing loss, only to disappear again. I am down to 500 or 1000 mg now. This might be the thing for me. I want to thank this forum for all the knowledge and Dr Gacek who kindly gave me advice via e-mail.
EEEEEEEEEEHHHHHAAAAAWWWWWW!!!!!!!!!!! GREAT NEWS!!!!!! Good for you. This is the kind of report us people in our first month of acyclovir and other antivirals want to hear.
That is so great! Thank you for coming by with your wonderful story. Did you have some hearing loss that got better? How long was it before you were confident the Acyclovir was helping?
Thank you all! I started to feel better maybe two months in. I have had really bad hearing loss, now I can manage without hearing aids but still feel that I need them in certain situations. Symptoms are still present and fluctuating but not nearly as bad as it was. Vertigo is completely gone right now. I had mini spins (before antivirals) but now, nothing though the whole summer! Last hearing test I did at the the ear clinic amazed them. They said I was in the normal hearing spectrum.
Thank you for posting Johan - this is great news and very encouraging for many of us. I have started taking valacyclovir 6 weeks ago and I also start to feel some tiny improvement. Did you follow Dr Gacek's dosage i.e. 3g for 3 weeks then 2g for 3 weeks and then 1g for ... not sure how long - it would be great if you could please share your dosage and Dr Gacek's advice! thanks a lot vaita
For a few weeks now, the fullness and tinnitus has unfortunately been increasing slowly. I had a bad weekend with lots of high tinnitus and my hearing really dipped. I am a little worried that the good days I have had is ending. I really thought I was on to something with the antivirals. I have increased the dose from 1000 to 2000 to 3000 mg to see if I can stop the negative development. Those of you who take AV's, do you have set backs?
I've had a roller coaster ride with acyclovir and other antivirals. I've been taking them for almost three months. I had a two week period recently where my ear went clear. I did have one bad vertigo day about the fifth day into that two week period. It was a low pressure system day. This past Sunday another low pressure system arrived and will be here all week. My ear went full on Sunday. Saturday it's going to be high pressure system for at least 7 days. Sure hope the clear weather means clear ear. What's your weather like?
Thanks for this thread. Still considering pestering my ENT doc about using one of these antivirals but thinking maybe I should wait until I am further along with my John's Regimen which is going on two weeks with only a few days with everything except the Beta Glucans and Vertigheel, the latter I am waiting on the delivery from some far away place. Anyways, what I wonder is why some folks take a certain brand name of antiviral and some others and if anyone has experimented with all three I've heard mentioned and can comment. I like to be as precise as I can be with that DR in my requests and if she accommodates me, I get the one that is 'most likely to succeed' if there is any such a thing in MM! Warmly, Holly
My prescription says Valtrex, but that is very expensive. The pharmacy always show a cheaper alternative. So that is why I go with Valaciklovir, which costs a tenth of Valtrex's price. I am going to go on with this a long as I get prescriptions. Since the symptoms worsened, it has stabilized and gone back a bit. I am stressed out right now, the company I work for will go bankrupt soon and I will loose my job. :-[
I have been taking valtrex (generic though) for about 6 months now. After the first month my insurance changed and I am not allowed to have recurring medications thru anything but mail order. When I got the refill it was still generic but a different manufacturer. Almost immediately I did not feel like they were as effective. Important to note that I did not pay attention to "who" made the pill before I started having the ear pressure and ringing again and thought to check. I actually moved the prescription to Costco and pay cash for it because it is worth it to me to have something that works. I never thought/heard about issues with manufacturers, thought they were all the same. BUT I did a search when I was going through it and was shocked at how many people had similar issues with changes between manufacturers. Good luck!
Thanks nicmgr. I have noticed with Kaiser that they will substitute seemly randomly with other formulations but it is good to be able to catch this and object. I find that will a report to my DR with a worry based on research or lessening efficacy, that she will go back to the original and my insurance pays for it. Seems we are in an a challenge between what works and Big Pharma profits. What other explanation is there? Back in bad day mode, emailed my Dr about the connection between MM and herpes, candita and allergies asking for more diagnostics on the infectious disease line . Not confident that it will yield a yes from her but after a Migraine diet, a MM disease diet and an IBS diet and having made a bunch of geographical and lifestyle changes too, plus the input from this site, I am at it again like Sherlock Homes… Hugs to everyone. Holly
FYI some people have reported to do better with certain generic valtrex than others and some don't do as well on generic but do well on brand.
also check where your generic is made many are from countries outside of the USA like India, my husband takes a medication, the generic form for a certain medical issue for years, last time he filled it, it wasn't working as good as before. It turned out this generic was made in India unlike what he was usually taking.