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The relationship between Vestibular Migraine and Mal de Debarquement Syndrome

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Suggested by: Polly Moyer

Under consideration

Comments: 34

  • 04 May
    Pat Laing

    Maybe mine could be Vestibular Migraine as well as Mdds.

  • 04 May
    Sharon Peachey

    As a sufferer of both Vestibular Migraine and MdDS like many others, this is a subject that desperately needs exploring.

  • 04 May
    Joanna

    This is a must for us sufferers

  • 04 May
    B. Myers

    I have both going on 4 years now. Took me the first 6 months of so many dr's it was unreal. Finally got the right tests and diagnosis down in Maryland @ John Hopkins. There is no cure and I am ok with that (maybe one day). No meds no diet nothing worked at all until the Botox shots. Thank you Botox. No more headaches migraine or dizzy. I don't concentrate on it anymore. yes the tinnitus cant be so annoying but I deal as we all have nothing left to do but deal with it!!!

  • 04 May
    Suzi q

    Asiffere of mdds the silent migraine

  • 04 May
    susan-jillian smith

    Very important to include this - we might discover it is not a rare as we currently believe.

  • 05 May
    Samantha

    I definitely think there is a connection. My Dr calls it vestibular migraine, but it was triggered by travel on an airplane and has not let up since.

  • 05 May
    Delia Treby

    Voted on behalf of the rare revolutionaries community.

  • 07 May
    Jan Cantrell

    It would be so wonderful if the study would include " spontaneous". Eight years no remission.

  • 09 May
    jo balfour

    We at the Cambridge Rare Disease Network would absolutely advocate for rare themes to be more consistently on mainstream medical summit agendas as the insight into rare conditions sheds much light on more common ones. Good luck in getting this theme onto the agenda

  • 09 May
    Elizabeth

    Mdds 8months in after a 2 week cruise. Horrible syndrome

  • 09 May
    Kim Kepner

    I have been told I have both Mal de Debarquement and migraine asocited vertigo in which I was told by neurologist that they are two different vestibular promblems
    I can tell the difference by a couple of things so far when I am really sick
    I do think they are similar in so many ways
    Mdds I can drive a car no promblems
    Mav can not when I have short spins and when I eat certain foods together I am worse with bright lights creating aura

  • 09 May
    Polly Moyer

    There's good information about the connection between MdDS and VM in Dr Cha's 'two way street' paper :) And, as one lovely neuro said 'When they unlock MdDS, it could go a long way towards unlocking VM. And, if the opto-kinetic treatment for MdDS works for some of the VM patient population, so much the better'. To which I'd add that what's learnt about rare conditions often brings added knowledge to more common ones. I hope this subject can be included in any discussion about VM at the summit

  • 09 May
    waqas haider

    No one knows Mdds cause.It might be due to vestibular migraine.But don't have any pain in inner ears or outer.

  • 09 May
    Isabelle Fautrero-Sayer

    For my friends whose life is greatly affected by this condition

  • 09 May
    Leslie

    Started 8 years ago after air travel. Symptoms much worse around my cycle. Vitamin B2 - Riboflavin - has helped with the horrible headaches.

  • 10 May
    Gail

    I agree - needs to be covered.

  • 11 May
    Diane

    My daughter has mal-debarqment - cannot cruise or be on a boat - its awful.

  • 11 May
    Louise Coidan

    I hope this campaign will raise awareness

  • 14 May
    Ataxia and Me

    A very important sympton which can be the cause of misdiagnosis

  • 14 May
    Michelle Erskine

    Voted by The Aarskog Foundation in support of Polly Moyer, bringing this topic forward for discussion and hopefully placing it on the summits agenda.

  • 14 May
    Suzi q

    Help migraines thank you with mdds

  • 14 May
    Henry Gregor

    Admin......please consider alongside third place post by Scott Dickinson......this comes under the same broad topic
    , thank you

    Edit

  • 15 May
    Jill Atcheson

    So many people would be so grateful if this subject could be discussed and researched. It’s such a puzzling syndrome and are these two different conditions or do they overlap? Would be great if this subject could be included. Many thanks.

  • 15 May
    Deborah Berk

    As someone who has dealt with MdDS since 2000 after a 4 day cruise I am anxious to have a spotlight shone on this condition. I participated in Dr Cha’s study and am committed to helping bring light to this disease in order to find a treatment.

  • 15 May
    Gillian Barr

    Have had the Rocky Boat for over a year ! It's eased off a bit but I still have minuted sometimes hours every day of it ! I've learned to listen to my body and lie down each day for at least 15 ! Egven when I feel ok ! You just learn to love the good days and accept the bad ! Stress is Big trigger xx

  • 15 May
    Laura G

    I have been Dx with MAV and MdDS as well. I was also Dx with Fibromyalgia in 2002 and often wonder if the nervous system is the root cause of everything. I pray daily they find some answers for this horrible and mysterious syndrome! Thank you!

  • 15 May
    Hayley Gardner

    Had Mdds for 15 years triggered by a long train journey also been diagnosed with hemiplegic migraines basically I have just learned to live with it but it has changed my life and not for the better just wish there was a cure or at least for it to be recognised and treated by specialists everywhere so we all have access to help to manage our symptoms

  • 16 May
    Sherri McMurry

    Praying for research and cure a close friend was diagnosed and suffers from MdDS

  • 16 May
    Nadine bishop

    the relationship between vestibular migraine and mdds need to be included into the migraine world summit for all of us that have been diagnosed with one of these or both ... and for those still searching for a diagnosis .

  • 17 May
    Mandy

    MdDS is crippling and very much migraine related. It's not just motion triggered & needed clarified properly for medical world ESPECIALLY those treating migraines. Ive suffered migraines and MdDS for yrs. It is complicated and so far not everyone falls into any of the theories out there. MdDS is missed so often.

  • 17 May
    Polly Moyer

    If possible, please approach Dr Cha to talk about this topic. She has a new paper out that covers it. One question could be 'Do you think the de novo cases of spontaneous onset (IE non motion-triggered) MdDS might be cases of VM?' Another could be 'Some neurologists think MdDS and VM are the same thing. What would you say to them?'. Finally, 'Is it likely that people can have MdDS and VM and, if so, how would this affect their treatment plan?'
    Thank you MWS :)

  • 17 May
    Sue

    I’ve have MDds since a cruise in 2013 no remission and migraines. From what I’ve read it seems that both are connected.

  • 2 days ago
    Michael

    I need to find a capable doctor that can either diagnose me with mdds or tell me its definitively something else

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