Post

I Have Vestibular Migraine

Personal Stories, Advice, and Support 68 People

    Lets Fight This Together!

    Its been three years for me. Three years of not knowing, not understanding, and losing all trust in my body. This thing has made me afraid…this I hate the most. Im constantly scared. Scared it will happen and I wont be able to run, I wont be able to concentrate, I’ll be...
    SOPHDOG SOPHDOG 22-25, F May 30, 2013

    Your Response

    Cancel

    They Just DONT Get It Nor TRY To Understand

    I wanna start by getting deep and very truthful. I sometimes want to be everyone's superman if i can make it better for someone then that makes me happy. But i began to think of my last post, that was optimistic and hopeful and i thought of the people and the times that you just...
    SOPHDOG SOPHDOG 22-25, F 1 Response Jul 16, 2013

    Your Response

    Cancel

    I Still Have Vestibular Migraine

     I still have vestibular migraine!!!!! 1o months later, I have tried Isoptin, Topamax, Sandomigran and put on 7kg and back on Topamax to see if I can handle the side effects a bit better, and still no closer to seeing light at the end of the tunnel. I feel as though I ...
    becmirosevic becmirosevic 26-30 14 Responses Dec 1, 2008

    Your Response

    Cancel

    Living With Vestibuler Migranes

    I was diagnosed with vestibuler migranes after years of ent appointments ,as kept having vertigo attaks along with constent dizzinesss all day every day.doctors put me on lycria 75mg but still not working and my condtions am getting worse,not being able to drive or walk very far...
    mgcjxxxx mgcjxxxx 31-35 2 Responses Jul 5, 2013

    Your Response

    Cancel

    My Migrane Is Stopping Me From Living.

    I'm 14 years old and suffering from vestibular migrane I got diagnosed just this week and I don't really know how to live with it it's hard going to school everyday as I find it extremely difficult to concentrate in busy places eg: school it's hard to deal with and usually leaves...
    Allycat439 Allycat439 13-15 2 Responses Feb 11, 2013

    Your Response

    Cancel

    I Have Vestibular Migraines

    Since this past May I have been very dizzy, lose my balance daily, walk like I am drunk, fall into walls.  After tests upon tests I finally was diagnosed with this Dec 04, 2008.  I can be sitting in the chair, out of the clear blue everything starts spinning, voices are...
    Sherry2554 Sherry2554 51-55 9 Responses Dec 6, 2008

    Your Response

    Cancel

    It's Been A Long Journey

    I'm so glad I found this site, thanks. My story is just starting to make sense to me, especially after reading more stories here. For a very long time, at least 20 years I've been dealing with these attacks that are very debilitating and come on with very little warning. I first...
    Mnisbett Mnisbett 46-50, M Nov 8, 2012

    Your Response

    Cancel

    My name is Donna and I'm 43 years old.

    I had ear surgery on my right ear in October 2013 to repair a perforated eardrum; I was only supposed to be off work for about a week and then I was supposed to be good to go. I went back to work for two and a half days and was taken from work by ambulance after suffering from...
    dlsmith728 dlsmith728 41-45, F 1 Response Apr 2

    Your Response

    Cancel

    This Is My Life

    Migraine can have many unusual forms .....it is NOT just a headache and can be extremely debilitating making it nigh on impossible to lead a "normal" life. Vestibular migraine affects the balance system and is characterised by episodes of vertigo and can last...
    lostbird lostbird 51-55, F 15 Responses Jun 27, 2008

    Your Response

    Cancel

    Story Changed: I Most Likely Don't Have Vestibular Migraine

    I just came back from the neurologist and now the story has totally changed. He told me that most likely I don't have a vestibular problem because all the tests came back normal... I have no idea what could be making me dizzy, especially for this long. I guess some people just...
    ftw7771 ftw7771 22-25, F 1 Response Aug 13, 2012

    Your Response

    Cancel

    I Am Concerned I Will Never Feel Normal Again.

    I experienced dizziness for 6 months in 2007 - I was unable to work during thIs time. Had MRI and full neurological tests. Was diagnosed with vestibular migraine as everything else was ruled out. Was prescribed endep and one other drug then allegron - this was successful - Stayed...
    Lkc051260 Lkc051260 46-50 2 Responses Jun 1, 2011

    Your Response

    Cancel

    Anyone out there have experience with Elavil

    as treatment. I am recently diagnosed and am on week 4 of Elavil with no results. I am a zombie.
    sstrack1 sstrack1 56-60, F 1 Response a week ago

    Your Response

    Cancel

    Trying To Sort It Out

    I've always had migraines (I am 40. Uggh... )... but they were few and far between. Nothing that ever needed treatment. One morning in July I woke up with a horrendous vertigo attack that sent me to the ER. That was treated with the Epley Maneuver and I was fine in about a week...
    ReneeN ReneeN 41-45 2 Responses Oct 26, 2013

    Your Response

    Cancel

    Vestibular Migraines - Slow Progress

    I was diagnosed with vestibular migraines last year after 5 years of debilitating nausea, dizziness, vertigo etc. Am now working from home as I could no longer stand travel to work due to motion sickness and time in office due to visual vertigo. Suffered terrible anxiety and...
    aimster aimster 26-30 Mar 6, 2011

    Your Response

    Cancel

    A Second Opinion Is Worth Its Wieght In Gold.

    June 2009 I began having feelings of vertigo but not real strong and really indescribable. Within a month they had become very strong and had me propped on the end of my sofa with my head supported most of the time. My wife was attending tech.school so from 2pm until 9pm mon...
    dizzycricket dizzycricket 46-50, M 1 Response Jun 18, 2012

    Your Response

    Cancel

    New Diagnosis, Same Monster

    So, I have vertigo AGAIN. This time the vertigo's been hanging around for a month so far. Today I just got a new diagnosis of vestibular migraines. I hope and pray it's finally the right diagnosis and the right medication to help me. 2 years ago, I had vertigo for a month. 3...
    DizzyNotLizzy DizzyNotLizzy 31-35 Oct 25, 2010

    Your Response

    Cancel

    Hope To Help Someone Out There...?

    Hi I was sick some years ago with what I thought was the worst migraine. I was hospitalised for a week having lumbar punctures, MRI, blood work. I couldnt' walk to the toilet as I kept falling down and had to cling to the walls. Nothing was found in my test so I was sent home...
    stoptherideiwannagetoff stoptherideiwannagetoff 41-45, F Nov 24, 2011

    Your Response

    Cancel

    The War Against Myself, Locked In The Prison Of Me, When Will It End?

    Hey, Its been about 4 years now, only about 6 months of finally knowing what i have. Im tired. My life is full of fighting myself. There are two people inside me. The person with Vestibular Migraines and the person without. The person dealing with it and the person trying to...
    SOPHDOG SOPHDOG 22-25, F 1 Response Sep 17, 2013

    Your Response

    Cancel

    My Entire Life.

    I'm about to turn fourteen. I've had vertigo spells for as long as I can remember, happening anywhere from school to hiking trips, and they lasted anywhere from a half hour to two and a half days. I couldn't go out late at night for fear of becoming sick. I'd wake up in the...
    FoxHoodedRabbits FoxHoodedRabbits 13-15, F 1 Response Jun 25, 2013

    Your Response

    Cancel

    Extreme Motion Sensitivity

    OFor many years i live in a state of floating.  When I wake up in the morning my head fills great pressure, this usually gets better.  I will continue to feel dizzy in a floaty way for days, months and even years.  When it lasts a long time I do get nauseous but...
    ifloating ifloating 66-70, F 3 Responses Mar 16, 2010

    Your Response

    Cancel

    I have Vestibular Migraines.

        My symptoms first started about a year ago. For me the feeling of being off balance is the most predominant symptom. I don't get many headaches. When I walk I feel like I am on a boat, merry go round, or uneven ground. Sometimes when I stand up from sitting I feel like I...
    ftw7771 ftw7771 22-25, F 5 Responses Jun 30, 2012

    Your Response

    Cancel

    i KNOW i can help. I have had Vestibular

    Migraines for 4 years now and I have a step by step way to take back control of your life and go back to living. Now before i go any further, please remember i know you may read this and it may come off that i think its easy to get through this, trust me, i know its not. I have...
    SOPHDOG SOPHDOG 22-25, F Apr 3

    Your Response

    Cancel

    Is My Doctor Right Or Wrong ?

    I have Silent Migraines my doctor try me on a med for a week did not work .I see wavy lines and sparling in vision 24/7 even when I close my eyes for about 2 years that never go away.My other doctor I had in the past say its only to last 20 min or so .I told my doctor about the...
    kellner27 kellner27 18-21, F 2 Responses Apr 11, 2012

    Your Response

    Cancel

    ~

    Hi. I'm turning 13 in a few months. I've had vestibular migrane since.... Forever. I think I was born with it. I get dizzy spells that last a minimum of two hours, sometimes days. I can't close my eyes, I can't sleep. Do you feel what I feel? I'm afraid all the time. I'm scared...
    SurviveTheStorm SurviveTheStorm 13-15, F Apr 3, 2012

    Your Response

    Cancel

    The Start

    In July I started this adventure. I was passed from Dr. to Dr. and put on different meds by all of them. Four months of being miserable and feeling drunk nonstop I woke up and it was just gone. Just like it started just gone. I was sooo happy! I went back to work and other...
    dizzycrazygirl dizzycrazygirl 36-40, F 1 Response Apr 18, 2013

    Your Response

    Cancel

    Waking To A Migraine

    ~ Nothing but pain upon awakening Made worse by all the light Being forced upon me by the world, Oh how I wish it was still night. Open eyes drawing in What I do not wish to see, Voices turning me into something I do not wish to be. Attempts to move upward Fail more than...
    direfarewell direfarewell 13-15, F Nov 18, 2012

    Your Response

    Cancel

    Vestibular Migraines

    I have this terrible condition . i have trouble relating it to a migraine .most days i am unbalanced .need to suport myself  against a wall .conatant earaches ;tinnitus never goes away .cannot sleep ,cant stand noise .stagger .i have had many tests and afte two years i got...
    jano1953 jano1953 56-60 2 Responses Dec 16, 2010

    Your Response

    Cancel

    A Little Quote Of The Day For Those Of You Frustrated

    Hello, My cousin and i were talking and she told me this quote it really resinated with me and i thought id share. We were talking about no one understand us. She is often ill as well. I know many of you feel the same way. Here is a little quote. Sit with it. Let m know what you...
    SOPHDOG SOPHDOG 22-25, F 1 Response May 31, 2013

    Your Response

    Cancel

    I Don't Think They Know!!!!!!!

    It's been 2yrs for me,it started after the Flu, I've been told Meniere’s Disease 2 yrs ago. 2 different things just in the last 2 wks from VM to Vestibular Schwannoma,cause of the growth they see on the nerve on my left side inner ear. The ENT says it's not that bad the Neuro...
    skipu2 skipu2 41-45 Sep 10, 2012

    Your Response

    Cancel

    New Diagnosis of Vestibular Migraines

    I have been burdened with many of the same symptoms for 2 1/2 years now. It all started with awful dizziness, facial pressure and ear pressure and pain that sent me to an ENT 2 yrs ago. I was put on antibiotics and a steroid(prendisone) for a possible infection. I didn't...
    vestdizzy vestdizzy 41-45 5 Responses Nov 30, 2008

    Your Response

    Cancel

    A Glimmer Of Hope, A Cure

    Imagine this disease without the panic.. i think that's our cure. Eliminate the panic and the wrong foods and we should be able to function normally. (Read the book "Heal My Headache" to know exactly which foods to eliminate, THIS IS IMPORTANT foods are huge triggers) We have to...
    SOPHDOG SOPHDOG 22-25, F 2 Responses Oct 1, 2013

    Your Response

    Cancel

    Dizzy For Over 9 Years.

    Hello to all my Dizzy fellows:I have been feeling dizzy and off balance for over 10 years and this is the first time I thought of joining a group in the hopes of finding advice and some kind of relief. My story started 9 years ago. I am unsure what caused the begining of my...
    avayner avayner 36-40 7 Responses Jun 22, 2011

    Your Response

    Cancel

    I Thought I Was Dying

    So, I was diagnosed back in April with Vestibular Migraine.  I was a lot like all of you, I went to countless doctors and had a million tests done and was consistently frustred when each and every doctor would come back and say they found nothing.  I noticed that I do...
    bubs2051 bubs2051 26-30, F 2 Responses Feb 4, 2010

    Your Response

    Cancel

    I'd Like to Blow It Off

    I've never gotten migraines until a few years ago.  Mine get so bad, I'd like to blow my head off.  I guess I'll never make fun of my sister for complaining about her headaches again!!!! See thats what happens.  These are so bad, I am unable to move, function...
    Neveah Neveah 16-17, F 1 Response Jun 27, 2008

    Your Response

    Cancel

    Found You At Last!

    So here I am. At last I know that there are really, really people out there who understand. It may sound a little over the top but I'm a bit teary with relief. But I'm meant to be sharing my story so here goes.... I can clearly remember the day it started. I was in a large...
    jolouJo jolouJo 41-45 1 Response Jul 29, 2013

    Your Response

    Cancel

    Frustrated

    Going back to a neurologist soon. My balance is acting up again and it feels like I'm walking on a boat. I don't even know if I have vestibular migraines anymore. I wish there was a treatment.
    ftw7771 ftw7771 22-25, F 1 Response Jul 16, 2012

    Your Response

    Cancel

    Related Experiences

    UK SUFFERERS - PLEASE GET IN CONTACT! So, I've never really wanted to write my story. Not because I am afraid or ashamed, but because I am so bored of talking about it, it makes...
    scharx scharx 18-21 Jul 1

    Your Response

    Cancel
    UK SUFFERERS - PLEASE GET IN CONTACT! So, I've never really wanted to write my story. Not because I am afraid or ashamed, but because I am so bored of talking about it, it makes...
    scharx scharx 18-21 1 Response Jul 1

    Your Response

    Cancel
    If there's a traditional chinese medicine hall where you are, try it. I did. Was prescribed ground herbs to take for a week, but my migraines disappeared after only a day of...
    immobilise immobilise 31-35, F 1 Response Jul 10

    Your Response

    Cancel
    The first time I got a migraine I was at school and it hurt so bad I was crying and I almost threw up. I went home and I got sick and I couldn't walk I could hardly move. I had...
    Diamondgirly Diamondgirly 18-21, F 3 Responses Jul 21

    Your Response

    Cancel
    Threw away my birth control. This week was "inactive pill" week. After my visit to the neurologist yesterday and finding out the pill was my main trigger, I need to make changes. I...
    BrittanyErin BrittanyErin 26-30, F 1 Response Jul 10

    Your Response

    Cancel
    I get horrible migraines. My hand will go numb, I lose my peripheral or get spots in my vision and I get really spacey. That's just first part after that stops the pain comes...
    TroyPaladin TroyPaladin 36-40, M 2 Responses 6 days ago

    Your Response

    Cancel
    I had headaches since I was like 7. When I was like 11 I started getting migraines. Medicine like Motrin helped then it stopped. I got a CAT scan & MRI. They said I have sinusitis...
    njgirll njgirll 16-17, F 2 days ago

    Your Response

    Cancel
    I've had migraine headaches since 15 and it has gotten from bad to worse overtime! I've seen a specialist about it and tried different prevention & painkillers but none seems to be...
    outtamymindz outtamymindz 18-21, F 3 Responses Jun 29

    Your Response

    Cancel
    First trip to the neurologist tomorrow! Let's (try to) figure out this whole migraine situation..
    BrittanyErin BrittanyErin 26-30, F 1 Response Jul 8

    Your Response

    Cancel
    god, these migraines keep getting worse. soon the pills wont do a thing. i hope i dont end up in the hospital all the time like my father
    kevinnc1 kevinnc1 18-21, M 3 Responses 6 days ago

    Your Response

    Cancel
    I get migraines all the time the worst is when your out at an amusement park or someplace where there is really bright lights it's really painful
    mattanme mattanme 13-15, M 1 Response 4 days ago

    Your Response

    Cancel
    I had my first migraine when I was 5 years old. I remember it clearly....walking around the playground looking at the other children and only being able to see their heads or legs...
    lemolemo lemolemo 41-45, F 1 Response Jul 2

    Your Response

    Cancel
    I started an anti-seizure medication (Topamax) for mood stabilising and migraine control, but had a severe reaction to it that I can only describe as a seizure. I started feeling...
    SuperInferior SuperInferior 22-25 Jul 12

    Your Response

    Cancel
    I get quite ill sometimes with headaches. The arrive unexpectedly an very suddenly. I am getting them more often now despite my painkillers and I'm terrified that they missed...
    nainaii nainaii 18-21, F 3 Responses Jul 16

    Your Response

    Cancel
    I am 20 & was diagnosed with MCTD when I was 15. The past 5 years have been one heck of a roller coaster. Not only has my disorder been bothering me, but I've developed migraines...
    Anaya1118 Anaya1118 18-21, F Jul 1

    Your Response

    Cancel