Hi, guys, havent been on this forum in yrs not because i did not enjoy it, I had a lot going on. I havent had any bad attacks in several years also, my husband died a few months ago after 4 yrs of illness and I managed to take care of him and still run my office, take care of all hh chores like many many caring spouses before me. I quit cooking ate out a lot did not listen to my body and have been under attack for about 3 weeks now. Vertigo better but oh my the ears...if not 1 then both then a day or so of remarkable improvement then next day worse than ever, just working 1/2 days when I can and not answering the phones---everything blurry--just alittle work on the computer. Back on JOH as it helped before. Just kind of feeling sorry for myself as no one knows but those who are going thru this, but this is my worse day. Thank you for letting me post.
So sorry to hear you are having a relapse. I'm new to all this having only had three months of attacks (thankfully no vertigo - yet). My ear has been bad for a week with fullness and reduced hearing. This is the longest stretch of an attack I have had. All the other times my hearing came back when the attack of fullness ended but this time the ear doesn't feel as full but the hearing is reduced. Is this how this thing goes? Is the longer the attack an indication of whether hearing will or won't come back? I'm sorry you have this thing again. Please take care.
So sorry for the loss of your husband and the return of MM symptoms. My heart goes out to you dealing with both at once. If you haven't been around for a while you may not know that for many MM seems to be caused by a herpes virus in the ear. All that stress could certainly cause a flare up. Though there is scientific research to support this theory, it is new, and many doctors don't know about it and/or trust it. The trick is finding one that will. Then you can get a prescription for an anti-herpetic drug and for many of us that seems to do wonders. Some, like me, have even gotten some hearing back. If you start poking around here you will find plenty of info on this topic. The current JOH directions discuss this as well. Hopefully the JOH stuff will kick in soon and you'll be feeling better. The fact that that worked before is promising.
Thank you, blythebay, JOH very graciously responded to an email, I am going to print off pages as per his directions and take them to my dr. And make an appt. I am going to do this today, as we all know that 1 more dayof this is another day of misery. Hopefully can get in this Friday. Cross your fingers that she will respond. I feel that my stress triggered it and of course eating the extra sodium hasnt helped. I am afraid to eat anything! I have been reading a lot of books by Menieres sufferers....1 said to not eat any sugar , salt or caffeine, i am following this but sure does limit anything, but the 1 thing that I have noticed is that you are not hungry going thru this I have to make myself eat, i am rambling again, just so darn miserable these past 3 weeks. THANKS
UPdate, got into my doctor this am took the 17 pages with me that JOH told me to take to substantiate taking the anti virals , she spent a few minutes looking at the clinical studies and said ok lets try it. Couldnt believe it was that easy so have started today. Thank God she was open to it I had already taken her the JOH regimen several years ago and she mentioned that she uses several components of it to treat other Menieres patients. Thank you, JOH, and thank you to this forum for having so much information and compassion.
that's wonderful! nroper You are very lucky to have such an open minded Doctor. I hope the AV's work well for you. Make sure to follow the doses for MM on page 104 of Dr Gaceks paper. Keep us posted please.
Hi - Where do I find Dr. Gacek's paper with the recommended anti viral doses? My ENT has agreed to give antivirals a try. The previous post said page 104 - where I do find that? Thanks, Susan
HI, Susan56, I received my link from John of Ohio in an email when he replied to me. BUT the link is here on this forum. When I was having my acupuncture this pm I just typed "john of ohio" in the search button and you can find it on his posts, but the good people who have been here far longer than I have can probably give you a lot shorter and easier way to get it. My therapist was interested so I was trying to show him on my phone. Good luck to you
its in the forums database here http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf
Vicki, i noticed that you are on acyclovir. I took my first dose wednesday i was having a great day and yesterday was a day from hell and all of last night the freight train going thru my head would not let me sleep I am literally walking the floor. I have put in a request fox xanax to my dr to calm me down never have taken that so a little apprehensive....what was your experience when first taking acyclovir?
Many people on the forums who start antivirals for MM get worse before better, ups and downs while the av is trying to suppress the virus. My experience was and is somewhat unique. I have MM since I am 13, so for 50 years now. When I started acyclovir I had MM for 47 years. I was sick with Labyrinthitis and was getting vertigo attack every day from Oct to Jan 2013. I took my first acyclovir on Jan 25 2013 and have not had a vertigo attack since. I was and am lucky I didn't have the ups and downs as many have, the longer I took it the better I felt. It did take me a long time to get to my maintenance dose of 800 mg. But next month will be my 3 year anniversary of no vertigo...fingers crossed for me!
Oh, my you have been thru it, prayers and good thoughts and all fingers crossed that you have continued success!
Hi, Vicki. Your story brings so much hope. Do your ears feel normal now? Do you have fullness or pressure? Just wondering if the antiviral has eliminated these symptoms as well.
No symptoms at all except for mild tinnitus and background noise drowns it out. 2 things for me though, I also have MAV so I watch my trigger foods too or they can cause me to feel off balance or get vertigo. Second is there are times I need to increase my dose, like in allergy season, fatigue, illness, anything that lowers my immune system, but it is a temporary increase until the situation is resolved. But the latter is true for all of us while on antivirals.
Very interesting. It's so great that you have a system that has almost eliminated all your symptoms. It takes a lot of time and effort to figure all this stuff out. I hope to get there one of these days.
Hi Vicki - If you find that anti virals work for you, do you need to stay on them forever? Or do you eventually get off them? Thanks, Susan