Hi everyone. It has been a long time since I have visited this forum. I have atypical Meneire's, more like cochlear's hydrops, so without the vertigo but sometimes get occasional dizziness. My worst symtoms seem to be the low hearing loss, tinnitus and awful distortions. With my first attack in 2013, I was given a dexo shot in the ear and high doses of prednisone by the neurotologist. I also reduced salt. But I don't know if it helped. That was in August. In October my symptoms were the same, so I started on JOH regimen and almost immediately had some relief and by January was almost symptom free and most of my hearing was back. I continued on it for a year and then stopped. I was fine for two years and then had a 12 week miscarriage in January, followed by fluids in the hospital and surgery. The next month, the stuffiness, tinnitus, distortions and hearing loss started back up and have been going on a bit over a month. I don't know if I should check in for another dexo shot...not sure if it helped the first time. Or try JOH again without the shot. I had a severe reaction to the prednisone so I will not take that again. I am also dealing with some thyroid issues and am waiting on a biopsy result. I am not sure but have read that low iodine can affect the thyroid and think maybe my low salt diet (lack of iodized salt) contributed. Plus, I am on plaquenil for an autoimmune issue and one side effect is hearing loss and tinnitus. But this attack started just prior to starting on it. Not sure if it is making it worse. But I have to take it for another year or so. Any thoughts or advice? The noises and distortions are driving me nuts. I can tolerate the dizziness as long as I don't get any vertigo. But I want to stop this again. Is JOH still the way to go? Any new advice to try? Thank you!!
Antivirals are the way to go. They have helped a lot of us. Take this paper to your doctor and get a script for valacyclovir at 3000 mg per day. Then read all the posts here about antivirals and make sure you get the right brand, etc. http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf
Actually, the best chances of suppressing the herpes virus that is likely to be the underlying cause of the symptoms is to be on both the regimen and the antivirals. A multi-pronged approach increases treatment success. Scrutinize both of these URLs: http://www.zoominternet.net/~kcshop/JOH.pdf http://menieres.org/talk/index.php?topic=557.0 --John of Ohio
Thanks John. My dr does not want me on the antivirals while trying to conceive or pregnant. Being that I am in my 40s, that isn't something we can easily put off for a time. I will read the links. I had great success with your regimen last time and actually think the bioflavinoids helped the symptoms a lot. Thank you.
Hey John, Do you know if the regimen is safe to be on while pregnant? Or would that be a better question for my doctor? I’m in my 20s, been trying to conceive for 2 years. But in the last few months, diuretics, low salt, a couple rounds of prednisone, and dexamethasone injections aren’t solving the uptic in strength and frequency of vertigo I’ve been having. I’m seeing a new specialist next month and I’m preparing information and questions. Thanks!
All of the elements in the regimen are over the counter supplements, for which I've found no cautions regarding pregnancy. None are known to be teratogenic (birth defect-causing). But check with your doctor, of course. Of course, the physician may not be aware of the known science connected to the regimen's components. Like many, he may question why you would even want to take these. Most physicians have no idea or belief that most Meniere's cases are caused by a herpes virus infection in the inner ear, which can be suppressed with the careful use of lysine. Let us know what the good doctor says. Of course, thousands of people with cold sores (caused by herpes viruses) control those with the taking of lysine. You will find no reports of lysine causing birth defects in mothers taking lysine for their cold sores. --John of Ohio
Hello. I have just found this website and had to join after seeing this discussion. I am not diagnosed with menieres but it has been mentioned. ENT discharged me simply saying it was my ear nerves because of my cervical spinal curve loss. I have taken aciclovir in the past for cold sores which are always accompanied with trigeminal neuralgia. I never associated the two conditions until recently when I learned I was low on iron (which viruses feed off?) and began supplementing. I have tried to supplement iron 6 times since September with the same outcome- major flair up of menieres symptoms and viral symptoms. This happens even when on lysine and aciclovir. I believe my ear problems are viral due to this and achieving a huge reduction in symptoms through lysine, aciclovir and antihistamines (until I involve iron) despite having neck problems, although I tested negative for hsv 1 so its maybe a different virus. I've concluded I'll have to stay away from iron supplementation and get back on aciclovir due to a current iron induced flare up
Rebecca33, It is possible to restore the lordotic curve to your neck. There are videos on YouTube that are helpful - https://www.youtube.com/results?search_query=how+to+restore+cervical+curve. I'm working on that myself at the moment.
is there any way to avoid back pain permanently? I have been suffering for almost 3 years from back pain.
@tammy05, It depends on what the cause of your back pain is. In our high tech society where we spend lots of time looking at computer screens & looking down at our cell phones, the bones in our necks straighten out rather than retaining the lordotic curve that's supposed to be there. This causes the the head to move forward into a position that puts excess stress on the neck/shoulders & which begin to roll forward & the upper back hunches up. That in turn puts stress on the thoracic & lumbar spine, spinal (back) muscles & abdominal muscles. Often, back problems can be cured by strengthening the abdominal muscles & correcting one's posture. There are videos on YouTube showing exercises that can help with this. Look up Upper Cross Syndrome & Lower Cross Syndrome. If your back pain is caused by a mechanical issue such as arthritis, bulging disc, or nerve compression, sometimes PT can help w/ gentle exercises for flexibility & strengthening, or if that fails, a cortisone shot can be helpful. The most extreme case would be surgery on the spine or nerve ablation. I have seen chiropractors for years, & though they've helped me tremendously for the short term, their work has never been a cure.