Severe Vestibular Migraines???

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New Member

Date Joined Jul 2012
Total Posts : 1
   Posted 7/11/2012 2:02 PM (GMT -6)   
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. 

New Member

Date Joined Jul 2012
Total Posts : 1
   Posted 7/15/2012 6:21 PM (GMT -6)   
I was actually diagnosed with vestibular migraines about a year ago.  I actually first started having them when I was studying abroad in Europe and had to come home early, because I was so sick.  I used to have to sleep on the floor in the corner, because I was convinced I was falling out of the bed I was so dizzy.  I was lucky that I was already seeing a dizziness specialist for something else.  He put me on Lorazepam, and it has been doing great for a year.  However, if I forget to take it, the dizziness comes back almost instantly.  I also get regular migraines, and he suggested I take Vitamin B-2 (riboflavin), magnesium, and butterbur.  He also put me on a special migraine diet.  I have problems following the diet, but the supplements seem to be helping at least a little bit.  Unfortunately I may have to switch meds to an anti-convulsant as well, because the Lorazepam may not be working for much longer.
But keep your head up!  From what I hear, most people grow out of vestibular migraines in a couple years.

New Member

Date Joined Jul 2012
Total Posts : 4
   Posted 7/28/2012 3:53 PM (GMT -6)   
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


New Member

Date Joined Nov 2015
Total Posts : 2
   Posted 11/11/2015 3:01 PM (GMT -6)   
Hi.......Just wanted you to know that I suffered for over 30 years yes 30 years not as bad as you. But last year two days before Christmas I ended up up in the emergency room. To make a long story short I saw dr after dr after dr and the testing OMG But I survived Things helped but really didnt work Went for rehab to. Finally,the end of September 2015 I was referred over to a headache specialist On three different medicines helped alot. I am much much more independent driving again shopping etc..Once in awhile I got a little oozy but ok For some reason today I got so dizzy that I actually had to make myself fall to the floor These medicine do make me tired on some days...Have another dr appt beginning of December .......If this happens again I will call her. The end of November will be the first time I am planning on going out to socialize at a friends house.. Nervous but going.....You are right people dont understand how bad this is Yes I needed to leave my job and havent worked since......MY SUGGESTION GO SEE A DOCTOR THAT SPECIALZES IN HEADACHES SHE IS ALSO A NEUROLOGIST BUT SPECIALIZES IN HEADACHES...Good Luck :-) :-)
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