Hello all! I’m Sara, 36 years old and 9 weeks ago started experiencing vertigo. It happened one day as I was getting out of my car to pick my kids up from school. For about a week and a half I just dealt with it thinking my iron levels were low. Once I made an appt with the Doctor she sent me for blood work(to rule out anything else) and stated that I probably had BPPV. I saw an ENT (which I felt wasn’t knowledgeable) and he believed it was also BPPV. I was sent to 5 physical therapy sessions for BPPV and the PT kept saying that he’s never had a patient with BPPV complain of pressure in the ear like I kept telling him. I finally got in to see the ENT I initially wanted to see but had a 5 week waiting list. He said that I didn’t have BPPV, to stop physical therapy and sent me for a hearing test. My left ear shows high frequency loss and my right ear shows low frequency loss which is concurrent with Meniere’s. The right ear is the ear that I’ve experienced fullness and popping. I’ve experienced tinnitus in both ears. The ENT stated that I have Meniere’s and told me to start a low sodium diet and to see him again in a month. I strongly believe we are all our own best health advocates so I started researching Meniere’s. I found several helpful articles as well as this site. I first started with upper cervical chiropractic care. My x-rays showed issues with C1 and C2 which I’ve found in my research is common for people with Meniere’s. After my first adjustment all the fullness was gone. After my second adjustment the popping in my ear was gone. It’s helped dramatically with brain fog and I had no vertigo after several visits. In addition I started a low salt diet only consuming between 500-800mg/day. I’ve cut out all processed foods and only eating fruit/veggies and minimal meat. I’ve noticed weight loss, an increase in energy and skin tone from this. 3 weeks ago I started the JOH regimen. After the first week I had an awesome 4 days. I felt the best I’d felt in years…then by the beginning of the second week I felt awful. I had the brain fog, dizziness, and tinnitus. The regimen does state that things will get worse before better and this is true. I’m on week 3 of the treatment and the tinnitus is gone but the dizziness is just enough to be annoying. I’m going to continue on the regimen for I know many have gained relief. I’m also continuing my upper cervical care and will ask the ENT about being prescribed Aclyovair when I see him next week. Thanks for listening to my story and I look forward to actively participating on this board.
Hi Sara! It's great that you are doing all you can to manage your symptoms. Let us know how it goes with the antivirals.
Hi Sara! Wow, what a great job you did doing research and finding things that work for you. My path has been so much more circuitous. I did chiropractic early on, but I wonder if she looked at C1 and C2. We didn't think it was Meniere's then. I may check in. Good wishes continuing to feel well. Is your hearing improving?
My C1 was twisted right and up and the C2 was twisted left. I have found lots of relief in the short treatment period of the upper cervical. Once the fullness in my ear went away after the upper cervical adjustment the hearing improved dramatically.
Hi Sara having totally lost hearing in one ear I would strongly recommend that you continue to push for the antivirals. There probably isn't a very lengthy window of opportunity to preserve your hearing. I hadn't heard of this site or acyclovir until it was too late. Best of luck in your search for relief and let us know of your progress as it will no doubt help others too.
I met the the ENT yesterday and he refused to put me on Acyclovir. He stated that there is no known cure and although some people may have had success it’s not successful for all. In several studies of cadavers and double blind studies nothing has stood out pointing to a viral infection causing MM. So I will continue with the low sodium diet, upper cervical care and the JOH supplements.
That's disappointing, Sara. My neurotologist also refused to let me try antivirals so I had to go to my GP. Maybe you should try your GP. Lots of people here have had to go to their GP and had luck convincing them to let them try antivirals. Its helpful if you print out some studies to take along.
Sara's vaunted physician said, "...some people may have had success it’s not successful for all." So, what does he do in his arrogance? He is certain that it wouldn't work for his patient. He doesn't have patients who "may have...success...." Professional jerk. The published data (which he hasn't, or refuses to read) clearly show a profound rate of "success." And there are also no clinical studies showing any antiherpetic drug side effects that would intervene, either. His mother must be proud of him, "My son, The Doctor!" --John of Ohio
Sara your future hearing is in your own hands and not some disbelieving doctor. If he doesn't believe menieres can be viral so what. Giving the JOH six months before you try antivirals will probably be too late to have any chance of saving your hearing. As much as I respect JOH his regimen is not meant to be a hearing saver.More of a viral repressant and perhaps tinnitus aid. Remember Doctors will only recommend what they know or want to know. They are scared of their own shadow just in case of any litigation. But that won't do your hearing much good. I wish I knew of antivirals before my hearing disappeared.
Hi Sara, My ENT turns out to be a fan of my music and recognized me immediately. We were like friends. He respected me, I respected him. Unfortunately all he had to offer was diuretics, prednisone and eat less salt. After a week of his regime I had a day or two that I felt no pressure, no fullness. The predisone ran out and my ear got full again. I called and asked what should I do now. He said it's not good to stay on prednisone so just keep taking the diuretic and eat less salt. I said, is that all you got? He said, yes, there is no cure for MM. My GP is willing to work with me. We tried fluconazol (antifungal) and acyclovir (antiviral) at same time. Within four days my ear cleared up. WOW!! No fullness for the first time in 3 months. So, I knew one of these was working, but I didn't know which one. When these ran out my ear got full again. So, I tried the fluconzol and after 10 days, nothing. So, I got a three week prescription for acyclovir and within a couple of days my ear was clear. Sounds great, right? Not so great, because now I was having vertigo almost every day. Good hearing, but vertigo. And, now for the last 12 days my ear has been full again. No VERTIGO! Yippy! But, my ear is full and loud sounds drive my crazy and I have to wear an ear plug 24/7. I can relate to the waiting period for the anti-virals to work as I take gloucosomine, chondroiten and MSM, for joints-mostly fingers. If I don't take it for a while my knuckles start swelling, hurting and getting calcium-like deposits. Then I start taking the three mentioned above and within a week or two my knuckles are fine. I suggest getting a General Practitioner that will work with you. Now I have been on acyclovir for several weeks and I have added JOH"s regime. Everybody says, Everybody!! Says!! The antivirals need at least 3 months to really start working. I can relate to JOH's frustration with Drs. that won't work with you! Once again FIND a Dr (GP) that will work with you. Do both Acyclovir and JOH' Regime.
I agree. Try to see if your GP will do it. If not, find a new ENT, and ask before you make the appt. if the Dr prescribes antivirals for Menieres patients. They may have to call you back but you'll save a visit if they say no. The antivirals helped me and many others. I've never tried the JOH regimen so I can't comment on that. Nice to have you here. Welcome
I also hope you have the option of a new ENT. If he knows it works for some people, why wouldn't he want to try it for you? There are plenty of studies in well respected journals that show an association between MM and viruses. They are easy to find if you Google menieres and virus. There is a list of them in the Databases section.