My name is Sorcia. I be had menieres for 15 years and tried all kinds of treatments. Some worked for awhile and then stopped. Others didn't help. I'm bilateral thus no surgeries. After 3 years of Antivirals relieving me of all symptoms, since August I've been symptomatic. Slowly at first after the first big episode but now it's my daily existence. I used to fight it, now I cope. I'd like to know if anyone else has experienced this because I haven't read anything here that suggests someone else has. Thank you
I'm sorry you're here because of this, but welcome you just the same. I can't offer any advice or solutions but I can say that you can't give up and you're in a good place here.
Hi sorcia, did you start taking them from a different manufacturer? It may be something to look into. Which AV were you taking? If it was a generic try the brand name.
Not all antivirals are the same. If one stops working (extremely rare), you can switch to others. Myself, I'd go back to max dose for six months before giving up. It could be a flare up that necessitates a higher dose.
The addition of a second antiherpetic substance (in this case, lysine) can gain success. Read all about it (and other helpful substances) here: http://www.zoominternet.net/~kcshop/JOH.pdf --John of Ohio
Thank you folks. I did take lysine but when the Antivirals started working I stopped. My initial dose was 2400 mg of Acyclovir a day. After 8 months I went down to 1200 mg. a day. Now that I'm symptomatic I'm back to the initial dosage. That's all the Dr says he can do for me at this point. He said that maybe I'd Spring Back. For now it's just day to day and less active week by week. I know how this goes so I did the best I could to maintain some semblance of normalcy with my life but that's no longer something I can do. Coping now after relief is very hard but no harder than being so lost in the beginning.
try Valtrex it said to work better and that's what's recommended now. If you get the generic valcyclovir make sure its not from mylan, most find northstar works well.
I had relief on valtrex then symptoms returned after 6 months. Things never got *as bad* as I have been in past years but I was pretty much non functioning for 6 weeks. I switched to Famvir and after 10 days I started to feel a bit better. Now I can do much more than I could last month. Hoping for more improvement.
I like John of Ohio's recommendation to write a letter, and include the study by Dr. Gasek, to your doctor prior to your visit. I plan to do this for both my PCM (appt. 1/13) and ENT (appt. 2/23). I've never met my PCM. We are new to each other, so I wonder how receptive she'll be to this idea. It's hard when you haven't built a relationship yet. I've only seen my ENT once. He's a neurotologist who told me at my last appt. that my next step is diuretic.
The first step should be antivirals. Any doctor who ignores a 90+% success rate is an idiot or just looking to get paid more for your suffering.
Agree with Vicki. Check to see if the pharmacy is filling from a different manufacturer. That happened to me and the difference was immediate. Also, know that if you want to try a different you could also call around to get cash pricing. I had to do that for a while because my insurance would only fill ongoing with mail order but they would not guarantee who the manufacturer was. The month supply for generic valtrex at cash price was about $60/month for me. Well worth it to be vertigo free for me.
Sorcia my pcp upped my antivirals to 3200 2 weeks ago it has helped tremendously. I am staying on this dosage for another 2 weeks then i am to go back in and see how I am doing.i asked her if this would be too much and she said that is the dosage she gives for shingles. Plus I am on the full JOH regimen, I was also doing acupuncture plus a few sessions of upper cervical spine treatment--3 to be exact---when my physical therapist was coming home from the airport after attending a seminar was shot and killed from "road rage". Absolutely a wonderful man so i had to hurriedly find someone else. Found a chiropractor in a nearby town and i am now taking treatments from him .just had a 3rd session with him yesterday. I think you need to fight it with more than the antivirals. Please try the JOH again and find a chiropractor or physical therapist. Good luck
nroper please clarify which AV you take that that dose. Antiviral doses are different for each antiviral.
I'm taking 2400 mg. a day. I will talk to my Dr about the change but I asked once before about the different Antivirals and he said Valtrex was the same as acyclovir but more expensive. Otherwise, he said no difference. After 3 years, has nobody else experienced this?
Sorcia, I'm sorry. You must be depressed. You'll get through this. I hope all of our information helps.