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Vestibular migraine: feeling all alone in this journey

Posted , 16 users are following.

GeekChicLove
GeekChicLove

I'm a 32 year old female who's been suffering with vertigo for the past 8 weeks. I've always been healthy but everything just changed early last month. During a short business trip in early Dec 2014, I first experienced symptoms of dizziness. I was standing in the bathroom brushing my teeth when all of a sudden, the room appeared as though it was rocking sideways and moving up and down (like experiencing an earthquake/tremor). At the same time, my balance was off and could not walk in a straight line. Unfortunately, these symptoms have persisted throughout my trip and up until now. I constantly feel as though I'm in a rocking boat, while feeling pressure/tightness around the back of my head. There are certain times when I feel I'm about to faint as I'm walking and feel a lot weakness around my legs. My symptoms feel worse with motion (moving head sideways or up/down, walking up or down the stairs, standing up or sitting down), with stress and food intake.

I've seen a private ENT specialist who wasn't particularly helpful. I had an MRI scan but the radiologist could not find anything, while blood test came out all normal. He then referred me to a private neurologist to make sure all other conditions can be ruled out. The neurologist was not able to diagnose me with anything specific (aside from having vertigo) and referred me to a physiotherapist who specialises in vestibular rehabilitation. Interestingly, the diagnosis I was given by the physiotherapist is vestibular migraine. After doing a bit of digging today, things are starting to make sense, and finally believe that this is the correct diagnosis. Though what's concerning is that there's no clear treatment paradigm for this type of condition aside from avoiding certain foods and physiotherapy.

These past 8 weeks have been extremely stressful for me. For now, my GP has signed me off from work until the end of this month as these symptoms have made it impossible for me to function in a mentally/physically demanding job. What has been particularly tough though is the lack of understanding from people around me. My work colleagues and family members think that this is all in my head or making it up. I may look normal in the ouside but this condition is very real and debilitating. It has affected every aspect of my daily living and I've been extremely depressed and anxious as a result.

I'm wondering if anyone else has been diagnosed with vestibular migraine and what steps are you taking to help you recover. Thank you.

0 likes, 25 replies

25 Replies

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  • amy12345
    amy12345 GeekChicLove

    Posted

    Sorry to hear you are having a horrid time. I have Labs so i dont know much about vestibular migraine but im on a support group of facebook called 'Dizziness & associated illness support' and Labyrinthitis support group. Do you have facebook? I found there are lots of people on there who might be able to offer you more support x
    • GeekChicLove
      GeekChicLove amy12345

      Posted

      Thank you very much Amy. I will definitely look out for this facebook group for further support.
  • marlene21102
    marlene21102 GeekChicLove

    Posted

    I've had this everyday now for the past 3 years  Rocking /Swaying ,as you describe ,think you should direct family ,friends etc to these giddy sites  let them read up ,then tell you it's in your mind .There are a lot with this ,yes like you non of us can ,and have found the cause ,it's as getting up one morning and it just begins ,no reason for it  it just begins .

      Most of us have eye probs ,but checked out fine ,then some say they have neck aches ,I'm such a one  hope you've taken a look on these sites regarding this problem. I know many now with this ,so no your not imagining it ,it's for real Geek 

       Good luck on your hunt for your answer ,as we all here do daily .

  • Roseann
    Roseann GeekChicLove

    Posted

    I really feel for you; this must be knocking you sideways both literally and metaphorically.  I haven't suffered from vestibular migraine but have suffered migraine as well as labyrinthitis, which amounds to a similar package.  Migraine makes you feel as if your whole body has been poisoned and it's hard for others to understand.  And balance issues are just awful, making you feel as if nothing is under control.  I would strongly advise checking out Facebook for a support group for Vestibular Migraine.  I've learn so much from friends around the world and it's quite possible one of them will have an answer for you.  I wish you well, and soon.
    • GeekChicLove
      GeekChicLove Roseann

      Posted

      Thank you Roseann. I appreciate your comments. I'll definitely check out that facebook group for further moral support.
  • jan1958
    jan1958 GeekChicLove

    Posted

    Hi there,

    Sorry to hear you are feeing so awful. Although I dont have the same diagnosis, I can certainly relate to a lot of what you have said.

    I too, found private ENT not to be very helpfull. Rutine bloods and MRI head were normal, but symptoms of unsteadiness, deafness, tinnitus were gradually getting worse. I sought the help of a neuro otologist privately in Kent, and he gave me the diagnosis of vestibulopathy with oscillopsia. I can only describe the oscillopsia as like a very unsteady video camera, a bit like as you describe like earth tremors.

    Unfortunately, there is no treatment as such, but vestibular rehabilitation can help eventually, but I have been told that Ishall never be back to how I was.

    I think its a very good idea of Marlenes to educate family members. I too look normal most of the time from the outside. I showed my husband a video on line of oscillopsia, this was a shock to him, but went some way to his understanding of what Im going through. I have been off work now for a year, and have had to give up my job as a nurse which i loved. Filling in the forms justifying my early retirement has been gruelling. My husband read what I wrote about hoe I feel and the impact of the illness which he needed to read, as hes been burying his head in the sand.

    Consider a referal to a neuro otologist. The balance centre in Kent I can highly recommend. They look at the whole person there and not just the condition. Sorry I can not offer anything more positive, I hope you get answers very soon. You are certainly not alone in this.

    Thank you Amy for the facebook tip.

     

    • GeekChicLove
      GeekChicLove jan1958

      Posted

      Hi Jan. Thank you very much for your reply. It's great to know that others can also relate to what I'm going through at the moment.  I'll try and see if I can get a referral to see a neuro-otologist for a second opinion. Can I ask where the balance clinic is in Kent? I'm currently based in London though but any recommendations would be great. Thank you.
    • jan1958
      jan1958 GeekChicLove

      Posted

      Hi,

      The balance centre is NHS and is at Medway Maritime Hospital in Gillingham. You can get your GP to refer you to Dr Surenthrian.I initially saw him privately at Spire Hospital Tunbridge Wells, he holds a clinic there once a month on Mondays. Not too bad for you from London, I had to travel from Bristol, but well worth it. Good luck.

  • paula59
    paula59 GeekChicLove

    Posted

    Hi

    Unfortunately Ive had the same now for two and a half years.  Ive had tests and seen ENT, neuro surgeons and now neurologist.  Ive been  diagnosed with silent migraine.  I have also been to the migraine clinic in harley street and feel its right.  Its much worse when stressed and like you everyone thought I was either making it up or exaggerating.  Ive had so many different medications, nothing has stopped it.  However I had botox and that eased a lot of my symptoms.  They also explained it all to me.  There is a big nerve running thru your face, behind eyes, forehead and down the back of the head and over the top of this is the corrugator muscle.  The muscle goes into spasm and irritates the nerve.  This gets inflamed and causes different weird neurological symptoms depending on which part of the brain it affects. The botox freezes the muscle and gives the nerve a chance to heal.  I had weird jumpy eyes and it was cured by this.  Im now waiting for the next round of botox thru NHS.  Headaches much better but dizziness stays.  If I get stressed it gets much worse.  Also if I give in to it, I get worse.  I have found dragging myself out improves it even though I dont really want to go out and am scared.  I managed to get from bedridden to back shopping and working. Ive got used to it and am no longer frightened by it but am sad Ive had to give up dancing and ski ing.  I now realise whats happening and I know its limitations so no more surprises to come - hopefully. Walking outside is the scariest with nothing to hold on to but I can manage indoors. Luckily in my new job,the car park is next to the office.  My last job was quite a walk and I was really wobbly on the pavement on my way in.  Weve been discussing this on vertigo and dizziness.

    • marlene21102
      marlene21102 paula59

      Posted

      Hi just to say your not alone 3 years I've been exactly in same position  it's relentless  condition ,I get neck ache .i just hope one day this will be gone for good ,I'm reluctant to walk far outside home ,but I'm okay driving,just the walking and standing  I just don't get it .
  • jane54071
    jane54071 GeekChicLove

    Posted

    I have vestibular migraines. I Have had it for years but could not get a good diagnosis. I take a percription called gabapentin and it is working well for me. I tried 3 other meds first and they made me feel awful. I see a neurlogist who specializes in otoneurolgy. I am having a migraine issue now that came on for no reason. They take about a week to completely go away where I feel better. MY doctor recommended sleep when I first feel the symptoms, and if I can't sleep to take a dramamine to make me sleep.  

    • alecar03
      alecar03 jane54071

      Posted

      Hi Jane,

      What were your symptoms? Mine are constantly feeling like I'm bobbing on a boat, general out of it and feeling off, extreme anxiety, and odd visual disturbances. Is this anything like you were experiencing? Thanks!

    • Maela
      Maela alecar03

      Posted

      Hi Alecar03. What you describe are some of the common symptoms of vestibular migraine. Have you consulted with a GP and neurologist?

      I stopped feeling so anxious when I found out after getting a diagnosis. 

      My balance is completely off when I have an attack. I've fallen over twice because I couldn't properly judge my steps. I also have the bobbing up and down sensation sometimes. After the attacks, I feel washed out which is also a common symptom. 

      I take pizotifen which helps most of the time. I also tried a drug called sibelium, which had absolutely no effect. I find that it's important to stay hydrated and to get enough sleep. There can be dietary triggers, but I've never figured out whether these apply to me or not. 

      I hope that some of this helps.

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