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Joney, I got some relief when my opthalmologist added prisms to my eyeglass prescription. I'm sorry you're having to deal with the in/out of network doctor issues. What a messed up system. You might try to get copies of your medical records, especially hearing tests. If you have Meniere's, the progression of hearing loss and whether lower frequencies are affected will be useful information.
June, For the 1st two years, my symptoms were on a cycle. At the beginning, the cycle was about 3 months. Now, it's about 3 weeks, give or take a week. My hearing recovered on the down cycle in the beginning. Not at all now, unless you count better hearing in my unaffected ear when the roaring in my bad ear ramps down. Dr. agrees a laby would be best to get rid of vertigo but he wants to rule out MAV. So now I'm being treated for MAV. Why did't we do this 6 months ago is what I'm wondering. Bottom line, is you need to push your treatment plan. You may need to find a new ENT. I went thru three. It was my GP that agreed to prescribe me AV's when I wanted to try them. The ENT's wouldn't do it.
Thanks for the detailed post, it makes it easier to understand where you are at. I did notice some similarities in our situations. To start let me tell you I have menieres and mav. Which really is not that uncommon. You did not mention mav in your post (or at least in my brain fogged state I did not register it..lol) As part of my mav condition my eyes seem to get very messed up when going through an episode. I call my mav attacks episodes because they seem to last much longer than my menieres attacks. Though I get vertigo with a mav attack, I can tell the difference between the two. With mav, in addition to my eye sight getting wacky and my eyes hurting, I have terrible head pressure and the dizziness is not rotational like menieres, but a sensation I can't t quite describe but throws my balance off terribly and creates a horrible dizziness. When you have mav and menieres there are certain things to be mindful of. High doses of vitamin b6 sets off migraines and mav. After seeing a holistic neurologist (only once cause he didn't accept insurance and his prices were over 300 just for a 15 minute consultation...that didn't include tests.) But the take away was good, he told me to take 200 mg of vitamin B2..and I must say that seemed to help a lot (in addition to magnesium citrate.) ...But note if you have cataracts you shouldn't take b2. Also you noted that you take lysine and Olive leaf extract, and from a post by John of Ohio, I believe he mentions that when taking the two together it negates the effectiveness. I will look up the date of that post if you are interested in the thread. I wish I could tell you I have everything under control, but I can't. I usually can go in remission, but generally that only lasts 6 or 7 months. I eat no gluten, dairy, sugar, caffeine or night shades. When not in an episode I exercise regularly. At the moment I have started acupuncture treatments, which are said to be more helpful for mav sufferers than menieres. I'm being hopeful it will help, though I have only been to a few sessions so far. I have been to different chiropractors as well, some were better than others. Thank you for mentioning the binocular vision dysfunction, I have not researched that before. The neurologist lead me to believe the vision problems were part of mav. Sorry this turned out to be such a long winded post. Wishing you the best Joney!
There is an MRI scan that can look inside your inner ear to confirm hydrops. From what I understand, in the US, UCLA is the only place that can do this.
Bonlyn - after reading your reply and then reading it again, I decided to google a functional medicine doc in my area. Great news! I found one, who is in network AND he is also a neurologist and works with Meniere’s!! Whooo Hoo! AND there was a cancellation and am going to see him this evening. He will do an examination, a VNG, Qeeg (brainwaves), and a balance test. I’m a little nervous, but also excited and hopeful.
All I can say is thank you, Jesus! I have hope! I hade been praying for some sort of direction to take to get some help. I believe God led me to this functional medicine neurologist. He found that my right pupil is higher than my left and my eyes and ears are not communicating very well. He also believes that the anxiety that has plagued me all of my life plays into all of this. The big news is he believes he can help me and asked me to give him the next 30-45 days to prove it. I had my husband come with me and he saw first hand what is going on in my brain and actually apologized to me for what he thought were actions on my part that were uncalled for...he now sees that it is just the way I am currently wired. That was icing on the cake because you cannot see physically what I experience, it sometimes looks like there is nothing wrong with me. My boss is one who just doesn’t get it...maybe I should have him accompany me to my next visit.
Wow that is a blessing. Praise Jesus indeed. I was going to text you I prayed for you, but I wasn't sure if it was allowed... a functional medicine neurologist with an opening right away...that accepts insurance. Romans 8:28 comes to mind. I pray that that God uses this doctor for miraculous healing for you. Please continue to keep us updated...and keep the faith! Bonnie
You were lamenting that there's no scan that can tell whether you have Meniere's or not. I'm saying that UCLA has an MRI that can see inside the inner ear to confirm (or not) the presence of hydrops, which is said to be the cause of Meniere's attacks. I think it's exactly what you're looking for.
Well, what is Menieres? Since that is unknown, how can they develop a test that detects it? I think it is still the case that Menieres is an effect or a state in the inner ear that causes a certain set of symptoms and that it can probably be causes by several different pathogens or other problems in the body. Sometimes the origin is treatable and in those cases sometimes the effects (the menieres symptoms) are wholly or partly reversible. Sometimes the symptoms may have already reached an irreversible state. Since the origin may vary it seems clear why the doctors cannot fine THE cure. Some things work for some other things for others. Menieres diagnosis has traditionally been a diagnosis by exclusion. If you have menieres symptoms and they cant find the cause, then it is menieres. If you have menieres symptoms and they do an mri and you have an acoustic neuroma, then voila, not menieres. The new scan mentioned above is post my experience but it would seem to advance this diagnosis by exclusion approach. So, if the scan that can see menieres is not available to you, i think what you want to do is rule out other possibilities with an mri and other tests and the knowledge of an experienced neurotologist and go from there. And after that you want to figure out what works for YOU. That is the point where this forum is often helpful.