I am feeling discouraged, and thought bouncing this off you folks might help. My MM was doing much better for a while after starting on Valacyclovir in the summer of 2014. I got some hearing back, more live-able tinnitus, less dizzies, better energy, less stuffy ear. Most of my vertigo was from MAV and BPPV and that is under control too. Things got worse at the end of last year, but I thought I figured out that was due to a change in the generic brand of Valacyclovir. Within a few days of going back to my original generic brand, Ranbaxy, my ear was clearing better and my energy and stability was better, but my hearing didn't get that much better. Lately, still on Ranbaxy, still at 3000 mg/day, my ear is getting stuffy again, my hearing is still not better, and lately I've had some bouts of very loud, distracting, exhausting tinnitus. That has hardly happened at all since I got on Valacyclovir. It so frustrating that 4+ years into these MM issues, and I still have these events for no discernible reason. And I pay a lot of attention. I also have an unusual symptom of having my stuffiness and tinnitus aggravated by changes in air pressure. It is very limiting, as it keeps me from traveling and going to hilly areas. And, I also have TMJ issues, which I know contribute too, but I think they are under control. Yes, it is quite a lot of things. Last time I talked to my ENT, she was suggesting I might try oral prednisone or predinisone shots. Since the brand of Valacyclovir seems to make a difference, I was thinking I might ask her if I could try Valtrex (the name brand). I've also considered looking into fungal treatment, as eating anything with processed sugar seems to set off my ear symptoms. Any thoughts on these ideas or any others? I already do most of the JOH. I've thought it helps.
I didn't have much success with prednisone. It sounds like you have quite a lot going on at the same time. I don't really know what to say as advice but do hope you get some relief soon!
Thanks Scott, that's good to know. Moodymom, sorry to hear the prednisone didn't work for you. I remember when you were posting about that. I appreciate knowing the information.
By the bay - I am on the full dose of famvir and have been on either that or valcyclovir for 13-14 months. My vertigo is definitely better but I always feel like things are coming back. I have a couple good weeks then a couple weeks with several symptoms, but not all of them and they are not as severe. I think life on them is better but I don't have the absolute cure like some seem to have. I will follow this thread to see what others say. I am having a rocky week this week too.
I was on Acyclovir for 3 years and went into the same kind of remission. One day I noticed a change and started to have attacks. From the advice and information here I requested the Dr to switch to Valcyclovir-1000 3X a day. It's been about a month and I feel that I'm on the upstream. Not all the way but I'm getting there. Good Luck to you.
By the Bay, I also had issues with brands. I ended taking the brand name Valtrex for 3 months. It was very expensive but seemed to help. I am currently on 2,000 mg of the Northstar brand. I just dropped down from 3,000 mg a couple of weeks ago and my vertigo is ok. Gardengal, I too, have not had fantastic relief from antivirals like other folks. My hearing has not improved, my earfullness is still bad, along with my tinnitus, hyperacusis, and fatigue. I also feel that it may be moving to my other ear. I follow all the dietary regimes for meniere's and MAV but my other symptoms continue to prevail. It's great that the vertigo has lessened but I still feel isolated as I tire easily and cannot deal with anyplace that is loud. It is frustrating. By the Bay, I just bought the Laurcidin monolaurin and will start that soon. That is supposed to help with any fungal issues. I will the monolaurin slow as many have suggested. Good luck and keep us posted. We all understand your frustration!
Thanks everyone. I think I'll look into trying Valtrex or the Northstar version, and possibly the Laurcidin monolaurin, too. Muff, I'll be very interested to hear how that goes for you. Do you have an increase in symptoms when you have sugary things, too? One thing since I have gotten back on the Ranbaxy is that even if my ear is stuffy, I can usually get a very satisfying pop to happen. There have definitely been big swaths of time when I couldn't do that. I am attributing that to the Ranbaxy and am glad for it.
I will let you know, BytheBay. I may wait a bit until I see my ENT as I think MAV medications may help also. No, I do not have an increase of symptoms with sugary stuff although I don't eat much of it anymore. I really watch my diet but it doesn't seem to help. Wow, I would love to have my ear pop. That would be great! Good luck with the generics. It is so challenging.....I went from Mylan to brand name Valtrex to Northstar. I am so glad that the Northstar worked for me. I hope you find the solution!!
Thanks, Muff. Have you looked into other causes of MAV besides dietary ones? As I said, for me, it turned out to be eyestrain. I've been glad I was able to avoid the migraine meds, as some of the side effects sound pretty unpleasant. I wonder if some people here are finding them helpful. I haven't heard much about that.
Muff, I just spent a little time looking into the monolaurin. From what I can tell it is for the treatment of viruses not fungus.
Thanks BytheBay, Eyestrain could be an issue. When my symptoms are worse, my eyes tend to get worse. I really haven't noticed anything else except for allergies that may be contributing to my meniere's. I do take zyrtec daily along with flonase spray. I have tried allergy shots in the past, but I had a horrible reaction to them. I am not a fan of prescription meds but I have read that MAV can be helped with prescriptions which in turn help the other symptoms. I feel that I have both meniere's and MAV. The sensitivity to sounds and lights are a symptom of MAV. I am not sure if anyone of the forum has found them helpful. And I may be totally wrong about the MAV thing but I will be talking to my ENT about it. Oh, so sorry about that the misinformation about the monolaurin. I thought I had read that it helps with fungal issues. I still plan on trying it but I will wait until I see my ENT. Thanks for correcting me on that.....I hate to give out bad information.
Muff, monolaurin does have anti-fungal properties as well as anti-viral and anti-bacterial. Many have successfully treated fungal based infections with it. http://www.ppt-health.com/candida-yeast-infections-overview/how-monolaurin-helps-candida-big-time/