Dizziness & Vertigo Support Group

edie814 There are also a number of us in the Menieres forum with MAV. Reading so many of the symptoms on here sounds so familiar to Menieres and not just vertigo or being dizzy once in a while. Please let me know what the dr says. You are going to a neuro"T"ologist for the vertigo correct? usually ENT's can't pinpoint Menieres/MAV with their tests. Good luck as i said pls let me know. thanks

I actually worked in neurology for 2 year i have been to 15 different dr including 3 neurotolgists recommend by veda and i have been dx with menieres by 2, i beleive incorrectly. I beleive it is mav . I recently went to see the dr i used to work for he is a neurologist that specialized in dizziness and balance he ran all tests ENG,VEMP, BAER, hearing and MRI they keep coming back negative. i have had this for 4 years I believe i had labyrinthsis first and it just seemed to manifest into mav and never really go away. If you havent read the book heal your headaches i read about it on mvertigo.org it is a great book that tells you how migraines arent just headaches and how mav and menieres is usually misdiagnosed. I have just started the diet and a vitamin regimen that was suggest by my neuro I am researching prescription meds at this time but i am not currently or have i ever really tried any i was doing pretty well on John of ohio regime with allegra and i would prefer to stay off any heavy prescription drugs so i came here looking for any alternatives

wow edie814 that's unheard of! Good for you. I don't know how you survive daily if you were dx with Menieres and don't take any prescrips. You'll have to let me know. I also do the JOH which has helped greatly and I've even taken it to my dr's to look at. But no meds and Menieres? How do you get out of bed? or walk without running into the walls, or hang on to the floor, how do you work, drive? I'm very interested in your vertigo and how you do it. My migraines I've had for 25 yrs so I don't have MAV nor do i get Migraines when I'm having an attack so that's out!. Please let me know your vertigo secret

i read very early on that the more drugs you take the less your vestibular system will learn to compensate for itself I do vestibular exercises i use some of JOH regime, but i still think the menieres was a misdiagnosis. i think at least at this time i only have Mav. i have everyday unbalance swaying rocking sensation blurred vision occasionally , ear fullness but no hearing loss, photosensitivty and every once in a while rotational vertigo. i dont have hour long bouts of vertigo just brief spurts some may occur back to back but thank god i have never had a very long episode. i do still work and drive and i am single mom of 2 i am the girls and boy scout leader, football trainer, and baseball coach i volunteer at church and i try to do as much as i can now because i never know when or if this god awful disease is going to take me down and if it does i am going to go kicking and screaming i am due to go back to the neuro on monday to review some meds because i would like to go back to work as a medical assistant soon. i am currently working in medical billing and coding so i sit at a desk and work independently all day because i need an income but hate the job.

Eddie what is Starring spells?

JOH? DX? I'm sorry I am so clueless on these abbreviated term and meaning could you guys help me out?

Dexamethasone. is what DEX is short for. it's cortisone shots through the ear drum. I can't figure out how it works but it seems to. They NeuroTologist numbs the outside of your ear drum bc of course they can't numb the inside, wait an hour and give you a shot of cortisone that goes inside of your ear drum.. the first one is not fun, it's not even the needle it's the spinning, they're adding MORE fluid to your already full head. the 2nd and 3rd aren't bad. you only spin with the first one for about a minute. I get 3 shots 10 min apart. I've had 4 or 5 done already (lost count) every 3 mnths unless I'm bad like in the spring I had to go after 2 mths. now I don't have to go for 4 mths yeah!! (unless i'm bad again then I call and go earlier) The JOH is from the menieres forum That's his sign on so that's what we call his vitamin regimen. it's actually not all vitamins it's also supplements. JOH stands for John Of Ohio. we all just shortened it to the JOH regimen. If you go on the menieres.org in the search box just type in JOH regimen and you'll get all his research and the vitamins/supplements and what they do.. Hope this long winded explanation helped! As I've said before the JOH has worked, not cured, we never will be but heck I'm glad I gave it a 'shot' !!!

edie, I only had the bad vertigo at first as I've said, since i've been on the meds and to a REAL doctor who knew what to do, I only get dizzy now and then, light headed, fullness when the barometric pressure changes. My hearing is pretty good, I don't need a hearing aid the only time it's bad is when the pressure is up so Menieres beginning stages doesn't always mean you're deaf or your hearing is gone. It worsens over time however.

DX =diagnosis and
starring spells are like absent seizure but you know that you are doing them like having a fixed stare on something and you dont want to break it it happens to some people when they are tired

always what kind of meds are you on that work?? i might bite the bullet and try something but i am stil reasearching what ,y primary gave me amitriptyline and teh neuro says topamax verapamil is out of hte question because of low blood pressure