MAV article

Here is an article I have on MAV that I had saved on my PC. Thought it might interest some people.

Becky

** ‘I had to crawl to the bathroom’ **Jane Fallace saw three GPs and five consultants before she finally used the internet to track down someone who could stop her vertigo attacks.

news.bbc.co.uk/1/hi/health/7231280.stm

Becky,

That was a very good article. I’m glad she wrote it and I hope it reaches a lot of people. I sure wish I had known what was happening to me when it did happen.

She was lucky to have found help so quickly.

I was talking with one of the older members recently about the recent rise in membership of the forum. We were wondering if doctors have gotten better at diagnosing this thing. I’ve been a member for a year and typically saw something like one or two new members a month - sometimes none.

Who diagnosed you, Becky?

Julie

Great article Becky thanks,
it just goes to show you how different we all are though,
if I read this article before my diagnosis, there would be no way , I would think I had MAV.
my symptoms are so different to these symptoms.

I’ve always doubted my diagnosis.
and yet look at the evidence topa has worked.
hmmm :?:

jen

Julie - I was diagnosed at a specialist ‘dizzy’ clinic by an ENT who specialises in dizziness - a neuro-otologist. He then referred me to a neurologist who specialises in migraine when Propanolol only partially worked for me.

The dizzy specialist told me that he has only just started diagnosing people with MAV in the last 2 years but that they now account for 15% of the people he sees in his clinic so its definately becoming a more recognised condition and more and more people are being diagnosed. My heart just goes out to the people in the past who have never got treated. I was talking to a neighbour today and she told me that she suffered from migraines, 24/7 dizziness and fatigue from age 17 to the menopause (it completely went away at this time). All the Doctors told her there was nothing wrong with her and it was all in her head. She changed overnight from a girl who went dancing every night to someone who hardly did anything and became known as being ‘difficult’. There must have been countless people like her who have suffered in silence, of course including many people who use this board.

Jen- this lady’s symptoms are nothing like mine either as I don’t get ‘episodes’ of spinning vertigo. When I first read the article I had doubts I had MAV because my symptoms were not like hers. However, from hearing what other sufferers experience I think our symptoms all manifest in very different ways. For example, while I do get very dizzy, my worse symptom is the nausea which at times it is overwhelming. I quite often wonder if there are people out there with chronic migraine who suffer from chronic nausea with little or no dizziness at all?

I sometimes doubt my diagnosis too, I find it difficult to believe as I’d never had so much as a headache before I became ill. I don’t think I will fully believe it until I start to feel better from a medication. My Dad is convinced I’ve got Lyme Disease as someone he knew with that illness had the same symptoms as me, but I don’t know.

Becky x

Becky,

i know one person, who is not actively posting right now who gets a lot of nausea and not nearly as much dizziness as i do. I’ve heard that from other people who are not actively posting. I feel so lucky not to get nauseous. That would just be the icing on the cake, wouldn’t it. Ugh!!!

I never doubted my diagnosis, not at all. Are you a migrainuer by history? Or did you suffer motion sickness as a child? Do you get any aura? Did you have texts of exclusion?

I know some people who believe, truly, that Lyme disease can cause everything under this sun, and every sun in the entire universe. They are convinced that I have Lyme disease even though my preventatives are working for. “But we need to find out what the underlying cause is” meaning, i am only treating symptoms.

In this country there is a great controversy regarding LD. Conventional docs believe you treat it with antibiotics and that’s it, it’s gone. Alternative docs believe in chronic LD, meaning that it can hang out in your system like Epstein Barr virus and cause all kinds of chaos. The problems is the testing. Conventional docs have testing that is pretty black and white - you either have it or you don’t. Alternative docs have these tests that are pretty vague, they show traces of these different bugs and just like the Epstein Barr virus, you can have it, but that doesn’t necessarily mean it makes you sick, right? Thus, the controversy. And for some reason, when somebody gets on the LD bandwagon over here, it becomes a religion for them. you’re either for them or against them. I hope I haven’t offended anybody here, God knows I don’t need to start any more Holy Wars. But when I told these friends of ours that I was diagnosed by the top MAV guy on the planet - why couldn’t they accept his diagnosis? They said, because he is blind to LD and that it was because of the conspiracy against LD by conventional medicine. Then when i told them that I was seeing him by phone consult, they told me that a LD doc was put in jail for treating by phone consult and this furthered their conspiracy theory against LD. When I told them that my entire family gets migraines and dizziness (trying to point out the hereditary effect) they said, how said that my entire family is suffering because conventional medicine refuses to open their eyes to LD. !!! :evil: They have a psychotic daughter and do I have to tell you what they blame it on?

I haven’t spoken to them since - before you know it, I’ll be locked up, either for strangling them or going psychotic myself!

on the other hand, who knows, maybe you do have LD. Maybe I have LD. It can’t hurt to get treated for it, it just costs a lot of money. You get all these tests. You take all these antibiotics and antimicrobials and all these supplements that they sell right out of their offices. If you find relief right away wouldn’t that be great ??? but if you don’t you risk messing yourself up with overdoses of antibiotics.

I should just shut up. If my post ends up starting a Lyme Disease Holy War - I’m outta here!

Julie

Oh Julie, this post is so Funny after last night! :mrgreen:
and yes be careful.
tread lightly just like jesus on the water
heeeeeeeeeeeeee!

HEEEEE! I’m laughing so hard I can’t breath :lol:

I was wondering when you would see this - can you BELIEVE IT ??

Maybe we DO have Lyme Disease ??? :?:

Nope I cant unreal, I’m suprised I didnt dream it. :smiley:

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Thanks Julie, your post made me laugh, :lol:

Your (ex) friend seem very evangelical about Lyme disease - surely everybody in the world can’t have it? I can’t believe that a migraine preventative would work on the symptoms of Lyme disease, could it?

I have never had a ‘classic’ migraine in my life and don’t get aura. I have always got travel sick but not as bad as I do now. I am 90% sure it is MAV but I sometimes just can’t get my head around it because of my lack of history. I guess time will tell if I get better on a preventative or not. If not, maybe Lyme will be worth looking into! :mrgreen:

Becky

Becky, I meant to clarify what Jen and I were laughing about, not to be rude - she and I were just laughing about this very story the previous evening :slight_smile:

Julie

Julie,

Thats alright, I thought it would be something like that. Your post made me laugh anyway!

Becky

— Begin quote from "Beech19"

Your (ex) friend seem very evangelical about Lyme disease
Becky

— End quote

This is where you hit the nail RIGHT on the head - and there is no talking to them about it, unless you want to get sarcastic and nasty, which we only do in private :mrgreen: