I went for my annual with my Otoneurologist yesterday. Everything in my oriiginal post is confirmed. Do NOT go to an ENT without also being evaluated by an otoneurologist. There have been great strides in knowledge in the past few years. They (Otos) are determining that a significant number of people who are being diagnosed with Meniere's actually have Migraine Associated Vertigo, which can and does present without headache, but does include any and all of the same symptoms of Meniere's including fluctuating hearing and sudden hearing loss. PLEASE save yourself from years of lying in bed, spinning and puking. And (tens of) thousands of dollars in misdiagnosed medical costs. ENTs which I am sure good competent doctors do not have the training and experience to discern and treat MAV. There are only a few dozen throughout the US so you may have to travel, but you don't have to keep going back. I don't think I ever went more than two times per year when it was active. Vestibular.org has a locator, but I didn't see a few listed so also search: otoneurologist and the name of the largest cities closest to you.
I am sure I will be posting some additional thoughts as they come. Most neurologists, as well, do not have the inner ear training to discern between migraine and other inner ear related issues. Also, ENTs and neurologists don't have access to the equipment nor understand some of the intricate diagnostic tests of the iner ear. Please try to get to an otoneurologist, if at all possible, by plane or head there for vacation. BUT. If it is just absolutely not possible, explain the situation to your nearest neurologist and take back up info like my post and stuff on Internet like the National Institute of Health. See if your doc can consult with an otoneurologist. Don't forget too that if you get an oto far away, you can consult via the facility's communication portal, leaving messages for your doc. I did that when the MAV was active. Many docs welcome that kind of communication. When I say significant, I think it is a majority of cases are migraine. The research is becoming more and more convincing, but has not been picked up much by docs beyond Otos. That is why it is so important to be your own advocate. Do not leave without a script for lamotrigine. Unless you have a very strong diagnosis for Meniere's or something else, please do this for you and your family.
I don't want to upset anyone. Let me rephrase: do this to rule out as early as possible what the Otos are beginning to see as a major factor I wish everyone the very best wishes I can on this very difficult journey. I hope that my posts save at the very least one person from the years of suffering I went through needlessly because four ENTS told me it was Meniere's and learn to live with it.
Yes, this is great info. Several of our members have also trumpeted this cause, and it's becoming clear that MAV plays a much bigger role than most ENTs give it credit.
I have been thinking lately that I may actually have MAV. I do not have vertigo. I do have an almost constant dizziness and rocking sensation. My worst symptom however, is my left ear fullness and pressure. I have found hormones to be my biggest trigger. I have felt my worst after the birth of both of my children and all of this started after I stopped birth control for the first time. In April 2015 I went to my GP because I was having tingling in my hands and feet and I was tested for Lupus, B-12 and RA. Results were normal so my doctor said it was anxiety and started me on a low dose of Prozac. Interestingly enough, my dizziness and ear fullness went away about 4 weeks later. That is a reason I am wondering if I do in fact have MAV since I recently learned that SSRIs can be a form of migraine prevention. I am currently in a bad spell, and have been since my daughter was born May 31. I am still on my low dose of Prozac 10mg. I am starting to wonder if an increase in that medication would start to reduce my symptoms. I still don't know if my reduction in symptoms when I first started Prozac was a coincidence or not. Trial and error I guess.
I've been a member of this board for many years but don't have a menieres diagnoses, but rather MAV. I've gained a lot of valuable info from here, including the herpes virus connection and many finding relief taking anti-virals. I searched online and found info linking migraine with the herpes virus and often considered trying antivirals. Maybe what I have is a milder (if there is such a thing) version of MM? Alas, my doctor won't prescribe them for dizziness, only herpes. This means that a $12 government subsidized script (I'm in Australia) would cost me $400 a month which is unsustainable long-term. A few members here had the same problem and advised faking genital herpes to a new doctor. Anyways...my point is, has anyone with MAV tried anti-virals? I have seen a total of five otoneurologists, had every test under the sun and been prescribed every preventive medication available. I've tried diet, supplements...you name it. (I've had MAV for over 20 years). I've tried NUCCA, $6,000 TMJ treatment, chiropractor and a heap of other stuff. An anti-viral med is literally the only thing I haven't tried. Oneurologists are good but they only have medication as treatment, and many with MAV are super-sensitive to things like lighting, weather changes...and medication side effects. I've no idea if I can get away with faking a case of genital herpes...I've been happily married (to the same man! ) for over 35 years.
I agree, great post. I just recently researched this to find one myself. To find a Board Certified Neurotologist (aka Otoneurologist, aka Neuro-otologist), you can go to the American Board of Otolaryngology website: http://www.aboto.org/ Click “Is Your Physician Certified” Leave the name and city fields blank and scroll to your state (There are only 3 in my entire state and none in my city) Click “Verify” This gives you the entire list of Board Certified ENTs (of any type) in your state. Under the column titled “Sub Specialty”, on the right, scroll down to find a Dr with “Neurotology” listed as their sub-specialty. If the column titled "Participates in MOC” says “yes” that means the Dr has maintained his certification over the years by participating in the MOC program... First, to be board certified in Neurotology, they've had further training and have to pass an oral exam. (Offered only once a year, in one place, so all of them go through the exact same process.) To maintain their certification over the years, they must participate in the Maintenance of Certification (MOC) program, described as a "lifelong learning and quality improvement program”. You can read about it under “MOC” on the link below. The site also provides information on what board certification means, how it’s obtained... Look at the Public/Press tab (blue), at the top of the home page, first. Of course this doesn’t guarantee any particular Dr will be a nice person or we’ll get good results. onehorse, did you ask your 5 Neurotologists for anti-virals and none of them were willing to prescribe them?