Migraine Associated Vertigo (MAV) – Misdiagnosed as Meniere's

Discussion in 'Meniere's Disease "Database"' started by studio34, Oct 17, 2010.

ATTN: Our forums have moved here! You can still read these forums but if you'd like to participate, mosey on over to the new location.

  1. studio34

    studio34 Guest

    Hey Wino -- mvertigo is paid for out of pocket by the original founder, Adam. He works in IT and has access to server space that he pays for himself. Adam got sick and tired of reading the misinformation and garbage written about migraine (as I am) and so decided to start the forum over there years ago specifically for MAV (which he now has well-controlled). The more info sites that get the facts out to lay people, the better. Dizzytimes has another good MAV forum and I have recently been told of a Yahoo group by someone here.

    Anyway -- I hope this thread can stay on track now (thank you Sarita) and remains helpful.
     
  2. VickiS

    VickiS New Member

    I just got 'The Migraine Brain' book and it's excellent...thanks for the heads-up (ooh, no pun intended!)
     
  3. studio34

    studio34 Guest

    Nice one Vicki. It's a book I often refer back to. There's so many good ideas in that book that it's easy to forget some things. It's almost something that requires going over every few months ... too easy to stray off the path.
     
  4. howie1

    howie1 New Member

    I agree with IMNOSCIENTIST...Lets move on.... We are here to try and and get any information we can to try and get symptom relief and our life back in order. We do not have to agree with everyone. We should be our own Dr's and take whatever information we find useful. we do not have to agree with everyone. that is what opinion and forum are all about... I was on Scott's other site and he lead me to this site for more informaton on MM since I has dual diagnosed. I do not agree with everything Scott says. But all he is trying to do is be helpfula as eveyone else is... To accuse anyone of financial gain without evidence is rediculous... the site works here. I read everyone's opinion and appreciate everyone's input. I choose to use what I want to use. but all of the information everyone provides can be helpful...
     
  5. thornapple

    thornapple New Member

    But I LIKE the pun! ;D
     
  6. Wino

    Wino Resident Honey Badger

    So, if I understand you correctly, Adam is the CEO of Glaxxo Smith Kilne and he is paying you several hundred thousands of dollars a year to post here? Ahhhhh, it all makes sense now.
     
  7. Taximom5

    Taximom5 New Member

    Some of us have objected to the omission of certain ways to manage migraine. Whether you, Scott, or anybody else objects, we are all permitted to voice these objections, HERE ON THIS THREAD.

    I notice that B12 deficiency/supplementation is not listed. Is there a reason for this? This is something that is represented both in "evidence-based medicine" and "anecdotal evidence."
    http://www.ncbi.nlm.nih.gov/pubmed/15196887
    http://community.wegohealth.com/group/migraine/forum/topics/2028394:Topic:1530
    http://cep.sagepub.com/content/22/7/513.abstract
    http://www.disabled-world.com/artman/publish/migraines-rid.shtml

    B12 deficiency is quite common, according to www.pernicious-anaemia-society.org, but is still considered to be extremely rare by doctors.

    My primary objection to the way the initial posts in this thread are set up is that the authors assume that the reader has already identified concurrent medical conditions and food intolerances. Scott talks about "getting control" of this issues, but not of the difficulties in identifying them in the first place!

    For things like food intolerances, vitamin deficiencies, hormonal issues, and even thyroid issues, not only would the patient not have identified these things, but very, very few doctors even consider these as relevant, in spite of the fact of proof of relevance. Readers need to be made aware of this relevance.

    Is it really too much for Scott and Burd to include gluten intolerance/celiac and B12 deficiency as part of their original posts? Or do they only post what worked for them and not what worked for others?
     
  8. Taximom5

    Taximom5 New Member

    No, it would not be redundant.

    Many people like to print things out for their physicians. They are not going to print out the whole thread. They would just print out the initial information at the top of the thread. Most of them aren't going to read the entire thread, anyway.

    Those who need more info on this connection should be able to read it on the initial posts so that they will KNOW to discuss it with their doctors.
     
  9. burd

    burd New Member

    Your helpful info is on the first page. If they are interested in the topic of migraine, they will at least scan the first few posts I would think, besides, the subject is all over this forum, they will most definitely find your area of specific interest and expertise, it will not get overlooked, they won't stop here with this thread and then disappear, they will find yours also.

    If every thread contained all the same information on a topic, then there would be a whole lot of redundancy, what's the point? Besides, no article or thread can possibly contain it all. Yours don't. If you are so unhappy with the way Scott and I chose to address this topic, why do you keep coming here to perpetuate unpleasantness? Post your own threads, scream it from the rooftops, just quit harassing us.
     
  10. burd

    burd New Member

    We speak of our experiences and interests. For YEARS I have been repeating my experiences over and over. There have been many times where I have been ignored and shrugged off. My points of interest and experience have not been included on hundreds of threads. And I don't expect ANYONE else to cover MY story. That is not anyone's obligation to do so. In all of your posts you have not addressed ALL aspects of migraine possibilities and relief. Don't expect it from others.
     
  11. studio34

    studio34 Guest

    Taximom: For the FINAL time, these other health issues that are continuously repeated here by you are COVERED in the original document and need no further discussion beyond what you have already added. I specifically had you in mind when that was written. I said this to you on page one and THANKED YOU for your input. Now please be gracious, accept our thanks, and leave it.

    (2) General medical “tune-up” – migraine symptoms are more likely to flare if there are other medical/physiological stresses on your system. Migraineurs should work with their other medical professionals if necessary to get control of other health problems such as allergies, food intolerance, thyroid, blood pressure, blood glucose, and hormone problems, or any other obvious vitamin/ mineral deficiencies.
     
  12. studio34

    studio34 Guest

    Damm -- you've blown my cover. Thanks a lot Wino. ;D
     
  13. Perses

    Perses Guest

    Am I the only one that thinks Taximom has serious OCD issues? Woman, we get you! ENOUGH!

    And one last point: you ACCUSE Scott of having financial ties to the pharmaceutical companies yet you have NEVER made the same accusation towards JOH who SPECIFICALLY tells people which vitamin company to buy products from and which to avoid as well as people like Caribeban who religiously push the anti-virus Acyclovir.

    Is this not a tad bit hypocritical? Hmmmmmmmmmmmmm....


    Studi and Burd, thank you so much for this well thought out and presented thread. As someone who struggles with almost chronic headaches, pain, and lightheadedness, the information gained on this thread is more than a multitude of others on here combined!

    Well done!
     
  14. Taximom5

    Taximom5 New Member

    Translation: "My priority is NOT to help the most people possible in assessing diagnosis and treatment of MAV symptoms. My priority is to speak only of MY experiences and MY interests. Anybody else's interests is their problem."

    Burd, my posts on this thread are not meant to address all aspect of migraine possibilities and relief, only some important ones that I am aware of, that you and Studio have missed.

    And thank you for highlighting the real issue here. I have edited and re-edited my initial post on my "Info for Newbies" thread, due to people posting and PM-ing suggestions. In fact, I asked people to do so: "Please post any corrections you may have, or any additions you would like to make, and I'll edit them in. I wrote mostly about the ones that have worked for me or that I am familiar with, and I know this list is far from complete!" And, as promised, I did edit them in, including various prescription medications.

    You, by contrast, simply say that "it is not anyone's obligations to cover all issues" and accuse me of harassment for daring to disagreeing with Scott's presentation. You also make various excuses, such as "redundancy" (which is ridiculous--one could say that this whole thread is redundant, as it appears on Scott's forum).

    How does it possibly hurt you and Scott to include a little bit more information on those first posts--information that could potentially help people avoid both migraines and unnecessary medication?

    Apparently, you don't care if a subset of readers is misguided by your thread.
     
  15. Taximom5

    Taximom5 New Member

    That isn't "covering" any of the issues I have brought up. That is mentioning it in such a way as to imply that people who ALREADY KNOW that they have these issues need to get them under control. It in no way addresses the fact that most people with migraines related to those issues need to check to see if they HAVE those issues.
     
  16. June-

    June- New Member

    Taximom, we can't expect other people to use their voice to endorse our ideas. We have to use our own voice to express our ideas. Start a new thread, make it as complete as you think it should be. There is nothing unique about this thread that makes it the only place to offer experiences and information.
     
  17. CarolineJ.

    CarolineJ. New Member

    Taximom, this is totally ridiculous. Burd and Studio have worked long and hard shining a light on MAV and for you to say such a thing is wrong and unfair to them. Burd and Scott's priority has always been to educate people and that is why Burd has stuck around here for so long and why Studio has another site. You do not have the right to attack her as I know Burd would never attack you in such a manner. Both of them have been very patient with you probably in hopes of saving this thread.

    You accuse them of making it about THEIR interests and THEIR experiences yet your attack on them and this thread has become all about YOUR interests and YOUR experiences.

    People should be able to post their information and experience here without a constant attack by a third party. You are losing the respect of this audience by this constant harassment of them and this thread. It is a real shame because the purpose of this thread is for it to be included in the database as a information thread about MAV and not 7 pages of you arguing with them.

    We all have read your addition to the thread and you have been thanked by Burd and Studio for your addition. It is in a location that people in future will see. You can add the same information to your newbie thread which I and others have directed newbie's to.

    Burd and Studio have considered your request and have said NO to you as they believe they have covered what they need to cover and your additional information is there for all to see.

    Please move on from this thread knowing that your point has been acknowledged.

    Your actions are starting to border on harassment of them and this thread and should end for everyone's sake and for the sake of those who have not yet come here looking for help.
     
  18. studio34

    studio34 Guest

    Walk away Taximom -- we're all sick to death of your harrassment. You sound like a broken record on steroids and it drags this thread into an unhelpful place. Most people dealing with illness here just don't have the energy for your nonsense. Mine and Burd's decision is final. The document stands and will not be changed. The issues have been addressed sufficiently as I have pointed out twice already.

    Deal with it or start your own thread.
     
  19. Taximom5

    Taximom5 New Member

    Caroline, I was not accusing them, but quoting them! Burd's own words: "We speak of our interests and experience....There have been many times I have been ignored and shrugged off."

    Apparently, she feels justified in doing exactly that to others.
     
  20. burd

    burd New Member

    Thank you Carolyn and Intrepid for understanding and clearing things up. Thank you for seeing that I have been misunderstood and misquoted by another. I've been accused of selfish motivation and of misguiding others carelessly which I find so outrageously absurd and insane given the unbelievable number of hours out of my life I have given up in the past 6 years to help others here.

    All I can effectively speak of is my own experiences and trust that others will share their own special areas of experience and knowledge, which they do so generously, that I am not qualified to talk about. It is absurd to me to have to speak of things I know nothing or little about when others can do those special topics so much better than me. For not doing so I have been accused of misguiding people for not being a f**king encyclopedia of all the possibilities for our symptoms, and was accused of reciprocating being ignored which is something I would not do. My countless hours of helping others publicly and in pm are proof otherwise.

    The point I was making was that even though at times my message has been ignored and shrugged off, I never had any expectations for anyone else to give my issues any special attention and certainly if it wasn't their field of experience. I never whined or bitched about it because I never saw it as anyone's obligation to talk about my personal issues. And I would never consider harassing anyone for not saying what I can clearly say for myself on a thread of my own.

    It is good to know that others see what is going on here and understand what Scott and I are doing.
     

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