Ive had dizziness and nausea for the past three months. Had a roaring in my ears that sounds like a truck is idling outside all the time. When I get really bad it's hard to even physically walk. Been to neurologist x5 visits, primary x4 visits, had every freaking test there is (bloodwork, MRIs, MRAs, spinal tap, eeg, ekg) everything else is ruled out. I do not have diabetes. I do not have thyroid problems. Cardiac workup is negative. No stroke, no mass, no schwanoma (not sure how to spell that), electrolytes are normal (except sodium was 142, which is "normal" but may be high for someone with MD) everything is negative. I have a family history of MD grandmother and some other distant relatives had/have it. Except I have these symptoms. And they're bad as you all know. So my primary finally says he wants to send me to an ENT. Off I go. Here I'm thinking, armed with my list of JOH supplements and I know what they all are and what they do and why they are suggested. Here's what happened. The ENT gave me some kind of a hearing test. Said it was normal with some high end hearing loss. The PA lady said that because I didn't have any unilateral hearing loss that I probably didnt have MD. But that's not all. About 2 hrs before I went there I had an "event." Basically I ate a hot bowl of pot roast (no salt!) that I made myself and had nothing but water, string beans, potatoes, onions, the pot roast itself, some Mrs Dash and a little garlic. That's it. But it was hot. I wondered at that point as I lay down to recover if maybe hot foods trigger this. Took zofran and vimpocetine and one meclizine. So the PA says I look fine to her. I told her it took zofran, vimpo and meclizine AND laying in my bed for a freaking hour before I felt better. Ive been dealing with this for 3 months so I know better how to control it. She got kind of upset and said "the Meniere's patients I have seen don't EVER recover that fast, so you don't have Meniere's." I respond by saying I've been taking a regimen of supplements. She doesn't care. She said that vimpocetine is for symptomatic relief (!) only. Amazing. Here's the sad thing. I'm running out of money and this was the 13th freaking trip to a doctor's office. Nobody has any answers. Where I live it's heavily populated but at the same time its a medical podunk. The JOH regimen seems to be helping as I can function here and there to some degree. I went there originally hoping I could beg for acyclovir but I didn't even get as far as "oh you might have Meniere's." I think she was upset because she didn't strike me as someone who likes to have informed patients. So I give up . I asked her for a zofran refill at least and she agrees. She says when I have another "bout" to drive myself in and they can do the VNG test maybe but even then it may be normal. The thing is, this cant be in my head. It cant be something else because everything else has been ruled out. I dont have carotid stenosis, aneurysm or anything else. All my symptoms match what most of you go through here. And most importantly, Im starting to feel better (slightly) after 9 days of JOH where the past 2.8 months I felt like garbage 24/7. So you tell me, do I have MD or am I in the wrong place? 3 doctors and not one has ever said they thought I have Meniere's. So now what do I do
It took me a year, 2 PCP's, 3 neurologists, 3 ENT's, 5 hearing tests, 1 balance test, MRI's CAT scans, 30 botox shots in my head, one steroid shot through my eardrum, 6 rounds of prendisone, 3 rounds of antibiotics, diuretics, 4 migraine meds, muscle relaxers, 2 kinds of benzo's, sleeping meds to come to the conclusion I have 'atypical' MM. Then once I started on JOH and antivirals…the latter taking building quite strong case to give it a try…I have dropped almost all the other meds and feel better than I have in three years. The MD's are mostly all guessing I think. The diagnosis is called idiopathic…because they are idiots…no..ha ha... I mean they do not know what causes MM. It is a bundle of symptoms with no other explanation. Mostly what they have to offer is the process of elimination of other things. Not real solutions. It is helpful to know this as not to expect more. I get your frustration. If you read the accounts of folk here who have been here awhile, the journey is long, all trial and error, and quite erratic.
I was told, after testing right away. Initially It was my left ear and now I'm bilateral. I had a very informed great Oto that specialized in Menieres. Now I've moved and went to 3 ENTs that I knew more about Menieres that's they did. I finally found one who doesn't usually prescribe antivirals to Menieres patients but he was aware of a study done in China. I really do believe the secret is in finding the right Oto. Call first and ask for a free consult, some Drs will do that. Or ask your primary to help you out with the antivirals since you're not getting anywhere with anyone else. I'm sorry you're going through this.
so sorry to hear what you are going through RVideo. FYI I do not have typical MM hearing loss but I do have MM and MAV, also onions and garlic are MAV food triggers, have you looked into that? There's a thread in our database about it ad this is the forms mvertigo.org here is a list of some of the foods that are MAV triggers AVOID: Aged Cheeses such as cheddar, emmentaler, gruyere, brie swiss, camembert, etc. Vinegar (except pure white vinegar, 100% acetic acid) Anything pickled, fermented or marinated Sour cream, yogurt Nuts, peanut butter, seeds and related oils (e.g. sunflower, sesame etc) Hot, fresh raised breads (reheated or toasted is permitted) Legumes, such as lima, navy and pinto beans, garbanzos, peas and soy products. Pizza Avocado Fermented meats (processed meats such as bologna, salami, pepperoni, summer sausage, hot dogs, bacon and ham) Chicken livers Beer and wine All other alcoholic beverages Chocolate and cola beverages Monosodium glutamate (MSG) Onion, garlic, leeks Citric Acid (citrus fruits, soft drinks, etc) Bananas Raisins Tomato Watermelon, cantaloupe, honeydew melon Tartrazine (yellow dye #5) Benzoic acid Aspartame Tea, coffee, and cola beverages (caffeine) Red dye and others could be possible triggers If you can get your primary to prescribe antivirals and follow Dr. Gacek's protocol for it and cut out high arginine foods and MAV food triggers you may see some improvement. Good luck and I hope you find what works for you!
So sorry to hear you are going through this. And how awful to be told you seem fine. I hate when medical "care"givers are so insensitive. My heart goes out to you--when you are having such a hard time and to be told that. Bleah. I also did not have recovery time needed after my vertigo spells. They turned out to be caused by two things--MAV and BPPV. BPPV was cured by the Epley maneuver. For MAV I have not needed to go off all those foods. The Migraine trigger for me was eyestrain, and I needed new glasses. Those two things--Epley maneuver and new glasses eliminated my vertigo. I also have atypical MM (aural fullness, hearing loss, and tinnitus). So that all took a while to sort out. Keep researching (this is a great place) and being your own advocate. There are solutions.
Thanks for all the positive responses. Im starting to suspect that MM/MAV are serious revenue generators for specialists because it's so hard to diagnose. You go in, they rub their chin and say "yeah lets do some tests," tests come back and so do you for another appt. They review the tests and say "okay lets rule out this and that and that." So, more tests and more appointments. I think that if they ever come up with a clear cut and easy to read test for MM (funny how they never attempted a viral culture on CSF, which is connected to perilymph) that ENTs and neuro specialists would cry and cry since Meneire's sufferers are willing to do anything to feel normal again. And they know it. You would think that diagnosing me would be easy, you know? I have a family history of MM. I have the same exact symptoms as the generations before, the only difference being this happened to me at a slightly younger age. My experiences during an 'event' are astonishingly similar to many people right here. And everything else has been ruled out, so that leaves only inner ear pathophysiology. The diagnosis should be like falling off a log. Evidently even falling off a log is beyond the clinical reach of practitioners here. It's sad.
RVideo - read this article. SCD is "rare" so in my experiences most doctors don't even consider it (my original doctor disputed my Meniere's as it is "rare" even after all of vest tests ruled everything else out and there was no other reason found). From your description here, to me this sounds like you. (Pun intended) http://www.washingtonpost.com/national/health-science/doctors-puzzled-by-womans-dizziness-and-amplified-body-sounds/2014/11/24/200dcc22-593b-11e4-8264-deed989ae9a2_story.html
@RVideo as I understand it, MM is a default diagnosis when the MD's cannot find a good explanation for this bundle of symptoms. So to answer your question, no, my original MD did not diagnose MM partly because after 10 days of prendisone and after the MRI, all MM symptoms were gone for awhile so it seems like a transient condition. It was only after repeat cycles and no longer responding to the prendisone treatments that this conclusion was drawn. The entire thing started with daily migraines and this pain was so bad, it took a number of months for me to discover the hearing loss and specifically what was occurring in ear. Now I can seperate them because the headaches are mostly reduced.