Hello fellows, Unfortunately, I rarely visit this forum. It is the good reason, I am fine (knock on wood), and everyday life issues prevail over. Anyway, people could find description of my problems in my older messages. I just wanted to pass on the news that I managed to go through two years since my last Meniere-like episode without any remission. My symptoms do not include hearing loss and fullness, I used to have vertigo during an attack. I also have permanent low-level tinnitus in my right ear that may be an unrelated condition. During attacks, the tinnitus would go louder and spread to my left ear. In the course of about six years I had a total of ten episodes, with pauses as short as ten days and as long as 15 months. Five days ago it was the second anniversary of my last attack. What I do is: 1. I am following dr Gacek's recommendation, so 800 mg per day of Acyclovir as a maintenance dose 2. I am also following JOH's protocol (Lemon bioflavonoids, Vitamin C, Vitamin E, MSM, Vinpocetine, Gingko, Lysine) 3. I am also taking an anti-anxiolytic drug, Effexor XR (called Alventa in my coutry), as a stress prevention I plan to gradually eliminate some of the pills I take. They may be just too much for my kidneys and liver (although I check them regularly). My first candidate is MSM, as it is supposed to heal my inner ear and decrease the tinnitus (it did not happen after almost two years of application). Next, I guess I would half the anti-anxiolytic. Next... we'll see. I hope this post would be helpful to people here. I found this place and the information on antivirals in my darkest hour. I cannot express my gratitude to all the people who shared information and experience.
That's great news. We both found relief about the same time and i'm very happy to hear that you're still doing well!
Thank you for your updated progress posting. For those of us who are new to this site and starting various treatment options, it is very helpful to hear from "veteran members". So happy to hear you're doing so well.
Thank you for posting. It is really important to hear from people who have had long term positive outcomes even though the impetus for them to report back is not so strong, so I really appreciate your post. Thanks!
Serbian, great news on your continued success against this beast. I have a question for you, and Scott Tom, and June and any others that have had extended relief. Prior to your string of months without symptoms did you have some significant setbacks? I was doing well on the valacyclovir for the past 2 months and now the past 2 weeks I am getting episodic again. Today I had a vertigo attack that was much shorter-lived than the ones I used to get but it was the first time in 26 years of dealing with this that the rotational vertigo was vertical rather than left to right horizontal. Also, the attacks over the past couple of weeks have come on extremely quickly where I have to grab something immediately. In the past, I usually had some warning before the vertigo or severe dizziness came on. So, I'm hoping that this new onset of "different" type symptoms is the virus battling back in some last ditch effort to stay viable. One other important difference is that my anti-viral manufacturer has changed. I was on NorthStar for the past few months but my health provider changed and they don't carry NorthStar. I am now getting Lucid brand. Has anyone heard any negative reports on Lucid? I googled it and found plenty of reports on Mylan's ineffectiveness but nothing on Lucid. One final question: Has anyone found return of symptoms after eating high arginine foods (cashews, pistachios, etc.)?
I did have symptoms return when they switched generic brands on me. And yes, high arginine foods should be avoided. It may be bc of that. My suggestion is to get back on the max dose of Northstar and take 3000 mg of lysine per day. Lysine should be taken three times per day on an empty stomach.
Serbian, Thanks for your update. It gives me hope. I feel dizzy today but so much better than I did 2 months ago. Scott, Thanks for the info on high arginine foods. I didn't know that but it makes sense to me because I can remember feeling sick and having severe headaches the day after eating to many nuts. I used to eat a variety of nuts often but stopped after Dr. told me not to eat more than 4 oz of protein a day. My best to everyone.
I recently switched Acyclovir manufacturer to Camber and feel a little more dizzy but not sure what has caused it. My Dr said Meniere symptoms come and go so I'm committed to trying to stay on Acyclovir although I've already had thoughts of I feel better maybe i'll stop the medications. I have growing to do in the area of acceptance. I think I had symptoms as far back as 22 yrs ago and didn't deal with until the vertigo with vomiting disrupted my life.
I don't eat nuts, so i can't say how they affect me, but if you're having those effects, then i'd stay away from nuts period. And check this list for other high arginine foods (e.g. lots of juices). http://www.sandiegohomeopathy.com/downloads/Lysine_Arginine_Foods.pdf
I remember having a feeling of an attack coming on the week three after I started taking Acyclovir. It did not develop into full episode, but I had a strong dizzy feeling. During the previous year I had two episodes of feeling as if it is about to happen, when I was experiencing a high stress, but it did not happen. I believe that we must avoid stress in order to keep the virus dormant. It might be just enough, but the condition itself generates a lot of stress, so one should also help with antivirals, supplements and (at least in my case) anti-anxiolytics. As regarding high arginine food, I did not absolutely get rid of it, I occasionally eat nuts. What I will definitely not eat ever again is peanut butter. I remember eating it a lot for several days before my last episode.