My very best friend has been quite sick lately and is desperate for help. She has turned to me and asked that I search the internet for her since the doctors and nuerologists she has seen so far have left her with little hope. I’ve read through many of your stories and let me tell you I have been in tears for many of you and have felt so very blessed to have my health. Enough about me though. I am trying to determine if my friend could be suffering from MAV and any information or suggestions that anyone could provide would be oh so greatly appreciated.
She is 35 and has a ten month old son and only breastfed for a few weeks (not sure if this is relevant but with all the hormal stuff thought I should add it in). For as long as I have known her she has suffered anxiety attacks, which for the most part she dealt with quite well. Though she initially thought she was suffering from vertigo the doctors told her this was not the case since the world is not spinning around her. Sadly she has trouble describing the feeling but explains that it is more of a heavyiness or a sinking feeling or pressure on her. You can not tell by watching her walk that she is dealing with any sort of problem. She does get relief when the rides in a car, rocks in a rocking chair, walks fast, puts a vibrating massager around her neck or pushing on the back of her head. Lying down also seems to provide her with some relief. She has no head aches and aside from some ringing in her ears four months ago no longer has any ear trouble. The feeling she is dealing with is 24/7 and has been going on for four month now. She does not suffer from head aches and seems to show no other migraine signs. There was no travel, boat trips or elevators rides prior to the onset but she did suffer from anemia after the birth of her son.
Have my fingers crossed that someone has some advice. My thoughts are with you all.
Personally, I found the eMedicine article on MAV to be very helpful–it described symptoms I had and also helped explain that they can last for years and no headaches are required.
Adam has posted it, but here is the link:
emedicine.com/ent/topic727.htm
I think we’ve all realized that MAV is often not the only issue we have: there is co-existing anxiety, we may have other ear issues–nerve damage, the mal de disembarkment syndrome–and they may all be inter-related.
In my experience, MAV is frequently unfamiliar to many physicians: there was an editorial by Elizabeth Loder, a prominent Boston neurologist, who felt it was because it fell between neurology and ENT and was not listed in the International Headache Classification list.
So, I’d advise your friend to read the review article, and if it seems to be part of her problem, to give the article to her treating physician.
I hope she gets some relief.
Kira
I would ditto everything Kira said, and I would emphasize - I believe she needs to see a neuro-otologist. when I saw an ENT, he tried to find an ear problem. When I saw a neurologist, he tried to find a neurologic problem. Both of them were dumb-founded. I started feeling better after being diagnosed by a neuro-otologist and received treatment. He knew right away what he was looking at - treats people like me all the time. My local ENT and neuro made me feel like I was a freak.
It a tough and mysterious road, this ailment. Your friend is lucky to have you to do some leg-work for her. If you don’t mind my asking, are in you in the US?
Julie