The Vestibular Migraine Community
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A note about my views


#1

Hello,

I’m James and I run, maintain and moderate this website and forum.

I believe it’s important you understand my views and how they relate to how I run this site.

Full disclosure: I personally have a different opinion on the origins of MAV to many. I don’t expect anyone to agree with my theories, but I expect users of this forum to respect each other’s opinion (including mine).

Some might see my theories as controversial but I believe it’s absolutely necessary to present a contrarian voice in a discipline where debate seems to have evaporated and we are left with an unproven dogma which in my view may hinder progress to find a genuine cure, not just control symptoms, as it causes people to too readily to accept the status quo, including researchers and medical professionals.

I am saying we shouldn’t accept that the way things are are as good as they might be.

MAV used to be this brave new diagnosis and everyone became really excited. It has helped to distinguish this condition to Menieres disease, which is similar but definitely distinct. It has helped channel improved therapy to an awful lot of people who have benefitted from it tremendously. But there are still unknowns and people are still left to suffer for years on end despite the latest protocols. We need to know what the root cause of all this suffering is, and until we have a treatment which can significantly shorten years of suffering, there is still much left to do and simply regurgitating a simplistic mantra is not going to help.

If you discuss this with many qualified professionals some will admit that we don’t know everything about this condition yet and some will speculate that the initial source of the problem is in the inner ear, not in the brain.

Whilst I personally disagree with the argument that MAV is initially caused by migraine, I believe I am fit to run this site because:

  • However you see it, this condition is really crappy and I recognise we all deserve medals dealing with it!

  • I believe it is a condition in which migraine is prominent and it is exacerbated by migraine and that migraines should be controlled or they could work to block compensation and recovery.

  • I recognise that migraine appears to be one of the more treatable elements in this condition (although we don’t know the exact action of some types of medication (some of the medication may turn out to be addressing the root cause) we just know it helps in many instances!)

  • I believe in it as a distinct class of condition that is very real and sadly suffered by a great many

  • I am a wholehearted believer in the clinically proven, largely successful treatment protocols that exist and these should be promoted and discussed on this forum, as should any emerging new protocols.

  • I believe the medications can really help and some report that they can get you to 100% (that’s fantastic!)

  • I am a long standing sufferer of the condition having been diagnosed with MAV by more than one doctor (but also with Secondary Hydrops).

  • I recognise that many people not only need to find the right treatment, they also need to understand what is happening to them. That is why I welcome debate and discussion about the origins of the condition on the website.

  • I believe no person should use a forum for diagnosis and should always seek out an appropriately qualified health professional.

  • I believe a forum can be a great place for sufferers to get more information about treatments, experiences of others that many inform them to get better treatment and a place where they can talk about their feelings and get understanding, support and above all, hope!

  • I believe in free speech and letting people have their say (except where it infringes upon civilised discussion. Disagreement is fine, personal criticism is not) I wholeheartedly welcome people presenting their own views and also leaving those views open to scrutiny from other members.

  • I will never moderate out opinions that differ or are in direct opposition to mine so long as they are presented in a civil manner.

  • I endeavour to maintain a friendly, attractive, open place where people can get answers and feel less alone with their condition.

  • I am technically qualified to run this site, it’s rock solid, it’s better than ever and I have the passion to ensure its future whilst maintaining its legacy.

  • Irrespective of what I believe, I’m here to promote the cause and help members help other members find solutions to their suffering.

In short, whilst I bring a slightly different spin on things, it’s business as usual!

In any case, the scope of this site covers all health conditions in which migraine and vestibular symptoms are prominent features.

I have been very careful to keep controversy out of the central support wiki’s that were originally drafted by me (with a structure based on the help of active members). These are based on a general publicly available consensus and form the spine of the information available on the site.

Obviously my opinions may from time to time impact the editorial tone of the forum. That is unavoidable. But I don’t see how this is a bad thing - I actually found listening to alternative explanations for my condition put my mind finally at rest and I’m sure I’m not alone. There is nothing worse than the unknown and not understanding what is happening to you and why. In my view many doctors are pretty bad about explaining things.

If you are completely happy with your mental model of what is happening to you, then great, but if you are still searching for answers, then this is a great place to swap ideas and build your understanding of your vestibular system, your related anatomy and your health condition.

If somehow you can’t see beyond my personal views and you feel this prevents you getting something out of the site, then obviously I respect your opinion: perhaps mvertigo is not for you then, but I trust you can look beyond them.

All the best,

James

PS Where I’m coming from

To see where I might be coming from please do a thorough search on the web and find definitive scientific proof that migraine is the cause of MAV that isn’t scant on detail - and if you do please do share it on here! :).

Also, ask yourself:

  • What causes the migraine in the first place? This is never explained.
  • Why vestibular migraine differs so much from ‘regular’ migraines. Why might that be?
  • How come many of us hardly ever have a hint of a migraine all our lives and then one day we start getting hit with MAV? Like a truck!
  • How come so many of the symptoms appear to involve the ear: the tinnitus, the fullness, the ear pressure or pain? Fluid sensations in the ear, this is a migraine, really?
  • If you have hearing loss, how can migraine cause you hearing loss? A regular migraine apparently doesn’t cause you hearing loss!
  • How come it’s 24/7 - a 24/7 migraine, really?
  • If you get a few seconds of vertigo - that’s a mini migraine?
  • How come you get positional vertigo or feel more uncomfortable in certain head positions in bed - that’s migraine, really?
  • Where’s the proof for all this? Is this science or a belief system?

For me, a lot of these things are red flags that tell me that not everything is quite right about this explanation.


Welcome to mvertigo!
#2