Hi everyone, I am brand new to this forum and to this disease. I had my very first flare up during Thanksgiving for three weeks and I am coming down from my second one as we speak (Only a week of relief in between). I was hoping for any and all advice/input I should know going forward. My symptoms include clogged ears, dizziness, loss of balance, nausea and uncontrollable vomiting during the worst of it, double-vision, weakness, and I am sure I am leaving something out. I have been trying to do some research on my own as my insurance just ran out and I have yet to see a specialist. (Just my luck! ) I was hoping I could reach out to others going through the same things and ask what can prevent or at the very least relieve these awful symptoms during flare ups! It seems diet could have an affect? Any and all advice is welcome! I look forward to hearing from you. Thanks so much, Dizzy Girl
Hi I am sorry that you are suffering. I remember all too well what you describe. I didn't have this forum in 2005 so that is a real bonus for you. Your greatest ally will be your attitude and a determination to beat the beast by gaining control over your symptoms. The big bonus is the fact that a lot of people have had success with antivirals. There is so much information on this forum about antivirals and a lot of other successful approaches. With each vertigo and vomiting menieres attack some of the receptor hairs in your inner ear flatten. The more episodes you have the more the possibility of losing more hearing. In my mind menieres is caused by a strain of the herpes virus embedding itself in your inner ear. Therefore it is essential, I think, for people new to the disease to start a course of antivirals as soon as possible. It should be relatively easy to obtain antivirals but overall that is not the case with doctors and ENTs, as if it's' not bloody hard enough coping with the disease we have to cope with arrogant, ignorant doctors withholding medication that is vital to save our hearing. If I were you I would look at antivirals first as they are most effective early in to this illness. Best of luck Keep reading there is so much information on this forum for you
Diet can have a big effect but you can take your time with that. For your hearings sake concentrate on antivirals for now.
Sorry to keep posting but I must add that you can't assume it is menieres as your symptoms can match other illnesses. Therefore tests are vital to rule out other things.
I agree with everything jaypr posted but the double vision and imbalance sounds like migraines or silent migraines, when you say dizziness do you mean vertigo? First thing is to rule things out by getting tested, but if you cant at this time try and get a script for antivirals, look up Dr Gacek's publication in our DB on page 104 are the type and dose recommendations. Stay away from food high in arginine and follow the MAV diet which is a migraine diet. Check our database for info on MAV and antivirals for Meniere's It takes time but with trial and error you should be able to find what works for you.
Hello DG, I'm sorry that you're feeling rough. We've all been there and there is hope! Try getting antivirals from your doctor. Any doctor can prescribe it so you don't need your ENT for this if she or he won't script it. Try taking 3000 mg for at least six months before you decide it's not working. A lot of folks here have only had benefits after several months at the highest dose. Then taper down to the maintenance dose. https://fhs.mcmaster.ca/otolaryngology/documents/recoveryofhearinginMeniresusingantiviraltreatment.pdf http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf (page 104 for the dosages) Inositol is a natural way to help with the anxiety and OCD that often accompanies this. In fact, it has been shown to be as effective as benzos. http://inositolpage.blogspot.com/2007/10/psycho-powder-panacea-or-placebo.html Best of luck!
Thank you all so much for the advice. It really means a lot to me! I am going to check in with the doctor this coming Monday and see if antivirals are something that would be a good option for me.
Walking into a doctor's office and right at the start requesting a prescription for antiherpetic drugs, more often than not, results in a abject "No!" Only a small minority of doctors are aware of the efficacy of antiherpetics for Meniere's. Most believe (erroneously) that our disease is idiopathic, meaning it has no known or knowable cause. Therefore, throwing antiherpetic drugs it simply won't work, the physician believes (based upon what he learned in med school). Before he sees you at an appointment, he needs the time to slowly read and take in the clinical findings of antiherpetics for Meniere's. The best information are the publications of Dr. Gacek in Boston. Follow the suggestions I've made here: http://menieres.org/talk/index.php?topic=557.0 --John of Ohio