Hi. I also am new to the forum but am so thankful for the information I've found here. You all have been a lifeline! My MM started full-blown in Jan 2016. After having weekly cycles of (fullness, dizziness, vomiting, brain fog) for four months I finally found relief with acylovir. None of the standard ENT recommended treatments made any difference (diuretics, low-salt, meclizine, etc). I followed Dr. Gracek's recommendation of 2400 mg/day for 3 weeks, 1600 mg/day for 3 weeks and then stayed on a maintenance dose of 800 mg/day. For 4 months I was completely symptom free and began to think maybe my MM was gone for good. Unfortunately it returned one week ago with the familiar cycle of fullness, then dizziness, vomiting and brain-fog. I've had two of these cycles now, although the symptoms seem to be less severe. I immediately returned to 2400 mg/day of acyclovir but haven't seen any improvement yet. I have an appt with my GP next week who has been open to prescribing anti-virals. After reviewing this forum, i plan to ask him to switch me to 3000 mg/day of valacyclovir for an extended period of time. He was concerned about side-effects the last time i met with him and i am concerned he may not give me a prescription of that dose for that long. I read the post that referenced a study showing minimal side-effects from long term use of A/V's and my recent lab results are fine. If anyone thinks I should try something different please let me know. Thank you all for posting your results. The info has changed my life. I've also shared this info with several other doctors and friends in hopes the word spreads. Still don't understand how our medical community is so ignorant. David
It's been so long that i have had relief from antivirals that i had forgotten some of the original symptoms. Pretty much all of the ones scott tom listed except i did not have vertigo. I had extremely distorted hearing, like hearing through an old broken paper car radio speaker back in the day. I couldnt even tell what a bass note was and music, forget it, it was painful to listen to. Now it is clear ans a bell. Thank you, thank you, thank you.
DaveB, did you recently switch to a different generic manufacturer? Hopefully, the GP will give you valacyclovir (or better yet, name brand Valtrex).
Scott tom: No. I checked with the pharmacy and they verified they have not changed manufacturers since i've been on the a/v's. I am going to my doctor today. Hopefully he'll prescribe Valtrex. DaveB
I've been on valacyclovir for 18 months now (I've worked my way down to the maintenance dose) and vertigo free. Without the recommendation of several people on this board I would still be suffering with the MM symptoms. So thankful for all the advice I've found here.
Not doing well these days so I'm having difficulty reading this strand. My basic question: Is there more success related to Valtrex than Acyclovir? I was doing well but the last few weeks I have had significant fullness, tinnitus and drastic hearing loss in my bad ear. I've been taking Prednisone for 8 days and am scheduled to have my hearing checked on Tuesday and most likely have two holes punched in my ear drum to get liquid steroid into the inner ear. Should I try switching to Valtrex before doing that? I wasn't happy with my oto down at Jefferson Hospital and started back with an ENT. She doesn't believe in the cause being a virus but my primary doctor was the one who prescribed the acyclovir. Sorry for confused post.
I would Tee. Many people have said that Vacylovor is more effective. I would also ask your doctor why he is going the steroid route when Prednisone doesn't seem to working. If.one.steroid is not working why would another? Just my opinion. Do what you think is right for.you and.good luck.
Valacyclovir is more effective than acyclovir. Valtrex is its name brand, and i found that more effective than valacyclovir.
wow this is fantastic! i was recently diagnosed with "endolymphatic hydrops" but i dont have any symptons besides the tinnitus. should i give it a try to see if it has an effect on the tinnitus? or any when vetigo happends? thanks
Hi Scott It's great to read success stories like yours and it really gives so much hope. Can I ask you, when you say "complete restoration of hearing", can I ask at what level you were hearing before, and at what level you are hearing now?
Scott did your tinnitus also went away? was it constant? have you been able to go to "loud" places like a dance or concert? thanks
Yes, it went away. Yes, it was constant. I had a whole stream of noises that drove me nuts. I also had hyperacusis, but i blame that on the benzos (common side effect). Once i stopped them, the hyperacusis went away. I do not have any tinnitus now that bothers me. Once in awhile, i'll get an hour-long buzzing when i'm really stressed out or if the weather is bad. Nothing major though. Ironically, i know of several folks who had labys and they still have tinnitus in that ear that has been taken out. Weird. I consider myself to be symptom-free in the sense that my problems are no worse than a normal person's.
