Severe Vestibular Migraines???

Hi all - I'm wondering if anyone else has ever been diagnosed with this.....

Here's my story -

In April of 2010 I woke up one morning - lost my balance - ended up doing a faceplant into my door jam - crawled to the washroom, tried to throw up- tried to stand up and couldn't.

Went back to bed and suffered bedspins,nausea,ringing in the right ear and horrific fatigue.

The next day- symptoms were worse. Went to the Dr. and they said text book case of Vertigo - gave me some meds and said it would be gone in 10days.  NOT

During that 10 days, things got progressively worse - headaches were unreal, 'white noise' in my ear was unbearable, dizziness was relentless and to boot, I had no sense of balance.  On top of this - I would suffer from blackouts - with no warning that when I came out of them I almost felt like a stroke victim.

Numerous visits to family Dr, Specialists, Neurologists coupled with a battery of tests - and 18months later diagnosed Severe Vestibular Migraines.  I was put on Topiromate (seizure medication) to alleviate the headaches and symptoms.  It worked for about 6 months and here I am again suffering a relapse.  Now I'm on predinsone for 14days.  It sucks!!!

I am in my mid-40's and have NEVER had a headache in my life - not even a hangover headache and then whammo - one day I wake up with one and have had one every day since - some days worse than others.

So... has anyone else ever suffered this?  Do you have any remedies?  I have lost valuable work time and credibility at my work as a result. 

As you all know - if the 'disease' can't be seen than it can't be understood.  My colleages don't 'get it'. It would be different if it was a broken leg, or a tumor..something 'they' can relate too.

I'm looking for any advice anyone can give me. 

Thanks,

Hi there I'm new to this forum and wanted to give my story
March 26 2012 I woke up feeling dizzy thought nothing of I ad went to work few days later it seemed to have gone. Week after I woke up to my clock on the wall swaying side to side really fast (only lasted about 30 seconds) i got out of bed and was very dizzy and off balance. Thought I got up to quick so went to work but was driven home by my manager an hour later. Went to docs and told vertigo and given procloparzine didn't work seemed to make me worse went back and put on something else. Started to disappear so stupidly stopped taking the tablets. about a few weeks later it came back after one night where I woke up and couldn't move my whole body was stuck to the bed (scary) next day I was off balance and my arms and hands were very weak (which lasted over a week) went to docs thy couldn't explain it and said I must be getting viral infection take paracetamol and will go and rest which I did but got worse by this time I was off work for 2 weeks because of it. I was then told I had labrynthitis and it would go away but also given cinnarizine to try, 2 days later went back as I reacted badly I couldn't sleep and I felt as though the bed was tippig backwards and I was holding on thinking I was falling off it (although I wasn't) then given betahistine to try again didn't agree with me. Started gettin head aches, sickness, unable to sleep unable to eat loss of apetite sensitive to light sensitive to sounds getting zig zags in my eyes, horrible feeling of been pulled to my left side of the body, brain fog, grinding noise in my neck crackling sounds in my head, ear pain has crunching u name it I had it. Went to ENT privately and his diagnosis was MAV and given propranolol went home and took it for a week but I became so much worse and I ended up in hospital I lost feeling in my left side of my body couldn't speak face dropped head felt like it was going to explode eyes felt like they wanted to pop out very painful and sore couldn't stand light and unable to sleep and very nauseous (never able to be sick, only every once before had numbness feeling when I was 19 and it was right side of body that went numb but only lasted that night and I returned to normal) doctors thought I was having a stroke so was booked for MRI to rule it out and rule out any imflamation of the brain Etc. all came back clear they diagnosed migraine with vestibular dyafunction and given amotriptyline start on 20mg and up to 30mg in a week and stay at that and booked for follow up in 6 weeks time. Decided to get the book heal you headache 123 which was very interesting and started the migraine diet which seemed to have helped as Kate brain fog went and don't feel as off balance although was still getting headaches every other day and gettin aura - zig zags in my vision every day I went away to Tenerife back on 15th July this year and still had symptoms but was bearable however after coming home after hours of travelling my balance and dizziness got worse ( possibly from the long hours of travelling) mum started gettin it too. Gone back on the migraine diet and hoping it will work however I am concerned about my diagnosis as most people who have this suffered with motion / travel sickness when they were younger however I never did and I actually feel better in motion it's when I stop is when I feel all the off balance and weird feelings can anyone relate to this? Going back to specialist in 3 weeks but just need some advice so I can ask questions when I go

Thanks