I have been having symptoms for nearly exactly 4 years. I'm having trouble getting anyone to write a script for antivirals. As of a year and a half ago I still had little hearing loss, if any -- nothing on audiogram. Lately I've felt I have some loss, but nothing tremendous. I'm concerned I've waited too long on antivirals. Despite no hearing loss, I feel ... dizzy most days and have weird eye blurring/difficulty focusing and constant tinnitus with episodes of louder tinnitus lasting a few seconds and _maybe_ accompanying increase in vertigo, but never super-bad, more like wobble increase. I am 26 and think I may be atypical due to age. I'm having another audiogram in 6 days. Does my age play a role in slower progression? Have I missed the antiviral window? The reason I've waited so long is in part due to showing few clinical signs. They were unable to provoke nystagmus and audiogram a year ago was normal, but very doubtful it still is.
I know gacek's paper said best results were seen in early management, but his follow up was only after a year, I think. Maybe thinking of another study. Would improvements be seen in later onset groups had he followed up for another year?
Also were his groups post-diagnosis groups. Because I've had a hell of a time getting a diagnosis because of no obvious hearing loss -- really expecting that to change next week. I can still hear conversations. Like I'm able to plug the 'better' ear and still hear most things. There is a small perceptible difference.
I think my exact onset was roughly 4.3 years. First noticed tinnitus and dizzy. I remember it fairly distinctly.
Nyynth, I don't believe there is such a thing as "an antiviral window." I had my first Menieres attack in 1990 at the age of 31. I didn't see this site until 2009 when I started on JOH. So, that's 19 years with no anti-viral treatment. JOH worked for a while but I fell off the discipline and started experiencing symptoms again a few years ago. Now I'm on a combination of JOH and valacylovir and have never felt better. 18 months ago, I went to see my family doctor and looked him straight in the eyes and said I don't want to live this way anymore. He was visibly shaken. I had the Gacek study with me and he immediately wrote me a script for 3000mg of valacyclovir per day. After getting relief, my insurance company changed and I started receiving some different manufactured brands and I experienced a return of all the symptoms. I finally got back on the Northstar brand in June, 2017 and have been feeling great ever since. I'm currently on 2000mg per day but haven't informed anyone of that since I would rather stockpile the good brand for as long as I can. Never know when they'll start sending me junk again. All the Best.
How are your symptoms now? I've gotta live my entire life and I'm very worried. I can deal with tinnitus, potential deafness, whatever, but the vertigo is highly annoying and prevents me from participating in ... well. I hike for a living and you could see the challenges. I still can with some difficulty certain days especially.
More info for anyone reading: I know I have herpes 1 for sure as my mom has it and actually had an interesting and strange outbreak in her throat as a teenager (prior to losing virginity, so likely not 2). Also that is a gross thing to have to ask a parent. I went to my GP with Gacek's paper and she basically didn't care. She tried to disregard it as clinically insignificant because she's the 'straight and narrow' type. Very frustrating. I'm terrified the ENT will have similar opinion (especially if hearing loss isn't documented, again). Is there anything I can possibly do to convince the ENT to prescribe Valtrex?
Nyyth, You have many questions. Here is a popular website to explore. Dr. Hain discusses many topics around Meniere's. http://www.dizziness-and-balance.com/disorders/menieres/menieres.html
Thank you, Pupper. I've read this. My primary concern is whether or not I've waited too long to hope for antiviral efficacy.
From what I have read of Gacek it is partially duration of syndrome and amount of hearing loss. I don't know where I fall in this gradient.
The sooner the better as with all things but my dr told me that though it was rare, some long standing cases did respond. Since your damage is little so far, i say for sure try it. Also four years is not all that long a time. Everyone responds slowly and gradually, that is just the nature of the beast. And not every one is going to respond at all. Not all cases seem to be viral. There was one man here, Caribbean, who promoted antivirals early on because of his success with ending vertigo. He had had menieres for decades. Even at that late date, he decided to try antivirals amgain and got hearing improvement which he thought was out of reach. Another woman suffered vertigo for decades and found success with antivirals. I think that is unusual for such long standing casesbecause extent of damamge done , but four years, i would definitely give it a good try. Good luck.
I have a referral to a neurotologist at some time. Hasn’t been disclosed to me yet because weekend. In the meantime, I went to an urgent care for valtrex, but the only prescribed 500mg a day. Should I take this, still, till my appointment and ask for an up-dose then?
I don’t know how viruses work and do not want to encourage mutation. If it works as a partial suppressant without that risk then I’ll take it.
Use of antiherpetic drugs to do not induce or promote resistant mutations in herpes viruses. Not comparable to the promotion of resistance in bacteria by the use of antibiotics. Very different; not parallel.