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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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  • margaret22116
    margaret22116 GeekChicLove

    Posted

    Anyone with these issues...vestibular migraine, eye problems, neck pain, fatigue general mallaise need to rule out auto immune disease.

    I had all of these symptoms for years and ent and neurologists were unable to diagnose the cause. Bloid tests were fine.

    In my 40s I was finally diagnosed by an immunologist after a year of tests and attending clinic. 13 years on I have had amazing treatment and now in remission.

    Following onset if disease with all the symptoms mentioned here, I got progressively worse. It came to a head really after I developed joint pain and my great gp listened to me and referred me to a rheumatologist in Lewisham. She recognised that I had an underlying inflammatory condition and referred me on. Without these two doctors paying attention and listening to what I was saying I would never have been diagnosed.

  • acuamy
    acuamy GeekChicLove

    Posted

    I was feeling pretty hopeless a couple of months ago and want to share what worked for me in the hope that it may help others. I ended up with vestibular migraine after a B12 injection. The doctor was baffled as to why the injection could possibly make me dizzy and I'm pretty sure that she didn't believe me. It was really frustrating. The constant dizziness started about 4 hours after I got the injection and never went away. I was afraid to walk anywhere. I got dizzy when I was driving my son to school which was terrifying. This went on for about 3 months. My neck and back were stiff and painful and I was exhausted all of the time. I went to an ENT and then a neurologist who finally diagnosed me with vestibular migraine. I am very sensitive to medicine so when she starting talking about the many prescriptions that were available I began to get really worried and felt hopeless. Then I had a few pretty severe migraines and in a last ditch effort decided to give acupunture a try. It was amazing. Within seconds my headache was gone and after two sessions, a week apart, my dizziness was gone. I missed the next week and started feeling some dizziness again but it disappeared completely after the next session and has been gone since. I am still in shock that this actually worked. I hope that offers some relief and hope to some of you out there that are suffering. Dizziness is a terrible feeling that makes living a normal life nearly impossible. I hope you all feel better soon!

  • Winny1985
    Winny1985 GeekChicLove

    Posted

    I also have been suffering with very similar symptons for about 2/3 years. It started gradually but now I get it every time I walk, my body feels weighted, severe visual disturbance, unbalanced, spinny feelings. The severity seems to come and go but I recently had a bad attack which triggered a panic attack. I ended up in A & E about 2 weeks ago and haven't been back to work since as it has really knocked my confidence. I have seen an ENT specialist who advised me I have damage to my inner ear he then referred me to a neurologist who confirmed vestibular migraine.

    I am finding the condition very debilitating, my employer although quite supportive is gradually losing sympathy for me as my attendance has been greatly affected. I get the impression they think I am imagining the symptons or being a hypochondriac. This is increasing my stress levels - a viscious circle sad

    I am on the verge of quitting my job as I am fed up of having to explain myself and feel a bit embarassed by the whole situation. I feel people may think being off work for several weeks with a 'headache' sounds a bit pathetic. 

    I am now having weekly physio which is helping boost my confidence I have also just been prescribed Nortriptyline which I am hoping will help. Has anyone tried it? 

    Thanks for listening x

    • alecar03
      alecar03 Winny1985

      Posted

      Hi Winny,

      I am sorry you are dealing with this horrible illness as well. How is the Nori treating you? I have very similar symptoms to yours. thanks!

       

    • Winny1985
      Winny1985 alecar03

      Posted

      Hi Alecar,

      Sorry I’ve only just seen this. I didn’t get on with the Nortriptyline some funny side effects I couldn’t deal with. I’m now taking propranolol which is OK I had to persist for a few weeks. Started taking it 3 times a day but it was also giving me side effects mainly struggling to sleep and restlessness so I’ve cut it down to once a day. Ups and downs each day but I’m slowly learning to deal with it. Have you been given anything that helps?

      Best wishes smile

  • Rboro1
    Rboro1 GeekChicLove

    Posted

    I know this post was from three years ago but I’m keen to know if you are on the mend.  I’ve been ill with MAV for nearly 12 months and I’m and my wits end.  Amiltriptaline now for the 2nd day.  Feeling spaced out from it.  Help me. 
    • Winny1985
      Winny1985 Rboro1

      Posted

      Hi Rboro,

      Sorry to hear about your MAV. Its horrible to go through I would say persist with the medication normally the symptoms settle within a few weeks and it may work for you. I’ve never tried amitryptaline but I’ve heard it can really help. If you’re still not getting on with it after that time then the doctor should be able to give you something else.

      I recently gave up my job because of MAV my employer was not understanding and the stress was making things worst. Thankfully ive started a new job which I am enjoying much more. I do think stress can really aggrevate the symptoms. I’m still spinning on a weekly basis but I feel I’m able to cope with it a lot more. Let us know how you get on with the new medication. I hope you feel less rubbish soon smile

  • sandra138
    sandra138 GeekChicLove

    Posted

    I am suffering from vestibular migraine. I have constant  feelings of fuzziness and lightheadedness on head and eye movements. Have been given Physio exercises which seem to be making it worse. Has any one got any similar experiences?
  • rosa12
    rosa12 GeekChicLove

    Posted

    I have been diagnosed with this too. I am miserable. I know exactly how you feel.
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