New to site

Hi

Am new to this site and as yet not had chance to read all your information but I certainly will!

I just have a question for you all. Do you only get vertigo, balance problems and the like whilst having a migraine or do you suffer in between. The reason I ask is that for 15 years I have been treated for Menieres disease and a doctor recently said because I have perfect hearing it can’t be Menieres but could be MAV. I had a bad attack last November which took my balance completely from me. Have vertigo and dizziness every day and have done for a year, so am a little sceptical that its migraine as surely I haven’t had a migraine constantly for a year?

Any suggestions/help would be grateful.

Angela

hi Angela

Welcome to the site. There is a lot of information on here

yes migraines can cause you you to be dizzy 24/7.

a lot of people on this site have 24/7 dizziness.

Hi Robert

Thank you for that welcome. Yes this site has an awful lot of information about MAV and just reading through something that Scott put on makes me wonder if this recent doctor I saw could have something. Will keep reading.

Angela

Angela, Welcome here - I don’t fully understand how it all works either but I am a dizzy 24/7 person and I have been diagnosed with MAV x

Without meds I am dizzy, heavy headed etc. 24/7. I did find relief from Nortriptyline for about 18 months. I am currently on Propranolol and Effexor, think its working!

Best wishes!

Hi Angela,

Your situation is not uncommon unfortunately. When I was a member of the Menieres (MM) forum there were MANY there who were certain they had MM when in fact they easily ticked the MAV boxes. When I dug deeper into their symptoms it was pretty obvious most of the time that it was not MM. MM is very rare – some 2 in every 1,000 whereas migraine affects about 12% of the population (16% in women and 8% in men). When you consider that the second most common symptom of migraine after headache is dizziness, it stands to reason that migraine should seriously be considered in cases of chronic or sporadic unexplained dizziness and vertigo, especially where there is no unilateral (one-sided) fluctuating, progressive hearing loss in the lower ranges.

To answer your question, YES, migraine can hit as attacks or migraine periods as you have been experiencing. Your smart doctor is correct: no hearing loss = no MM. Glad you found him/ her.

Read this paper as a start and begin treating this as migraine. If you begin with lifestyle modification and trigger management you may see massive improvement quite quickly:

Let us know how you get on.

Scott :slight_smile:

Yes Scott for 15 years I have been treated for menieres, had surgery, injections, tests, the works but nothing helped my dizziness and off balanced feelings. I have all the visual triggers that you list on your info sheets and I suppose thinking back all the ENT doctors didn’t really want to know about these triggers all they were interested in was my hearing which is super sensitive and am no way deaf.

This site is tremendous I have all the information sheets at hand and will read when I can, reading a big trigger for me. Have followed advice and have ordered some overlays today, so will get started soon. Made me laugh when reading the 10 commandments for MAV and the first one being accept the diagnosis. I have been resisting this for 8 weeks since I was told I probably have MAV. Refused to believe that without my usual aura migraine that my dizzy symptoms can still be caused by migraine. He prescribed me Pizotifen which I didn’t take because I heard you put loads of weight on and I refused to believe it was migraine to blame for my disabled state at the moment. However, I will maybe try them now after I look at my diet etc.,

I can’t thank you enough for all your information on this site, its just amazing.

I will let you all know how I get on. I am excited for the first time in 12 months that I may have a solution to my problems, even if I can reduce some of them I will be delighted.

Thank you again Scott.

Angela :smiley:

Hi Angela,

Denial seems to be part of the trip most of us start on – including me. I was in denial for 2 years. For me it was “uncompensated vestibular neuritis” Pfffft :lol: The more you get your head around this, the more you’ll wonder why you ever thought it was MM.

You can start by giving this a go and seeing if it makes an impact:

Avoiding the 6 Cs

  1. Cheese ( + dairy products)
  2. Caffeine (Now on decaff only)
  3. Chinese food (MSG – Soups, crisps, processed meats)
  4. Citrus Fruit and Drinks (+ Pineapple and Banana)
  5. Chianti + Red Wine
  6. Chocolate
    

Avoid yeast: Marmite and fresh bread

Make sure you do this:

Regular Sleep
Regular meals
No Undue Exertion
AVOID STRESS