Newly diagnosed with Vestibular Migraine

Specific Illnesses & Conditions VM/MAV
1

Hi Everyone,

My Name is Kristy and I am new here. I am a 27 year old female in Australia. I work as a Gym manager, part time fire fighter and enjoy running marathons and competing in ironman 70.6 triathlons. I have been diagnosed with Vestibular Migraines by a Neurologist at the Brain and Mind Research Institute two weeks ago. Let me rewind and tell you my story.

On the 27th of December 2013 I suddenly came down ill with chronic constant dizziness and nausea.
I visited a doctor 4 days after the onset who diagnosed me with a virus affecting my inner ear. During the visit to the doctor I mentioned I had no ear pain, fullness, ringing or infection. I was given stemetil for the nausea and went home.

During the past two months I have visited 4 different doctors, each time with varying diagnosis of virus through to BPV.

As time went on, I have had to stand down from my position as a fire fighter due to my illness.

My mental state has gotten worse by this stage. I was having trouble talking, when I think my mind goes blank and I simply cant finish a conversation. I was forgetting things, going to the shops then wondering what I was doing there, even sent myself a package from the post office.

I have had blood tests, CT scans, MRI scans all with a clear result.

I find motion makes this worse, travelling in a car I can ONLY look forward ( obviously makes driving an issue), and the dizzies are worse after eating.

My doctor finally decided to send me to a Neurologist who has diagnosed me with Vestibular Migraine.

I have been taking 200mg twice a day of Epilim, which seems to “numb” the sensations but doesnt stop the symptoms.

Anyone else have this chronic form or Vestibular Migraine?

I am finding this illness very hard to accept. I am a busy person in life and cant seem to adapt to “slowing down”.

I am thrilled to have found this forum and look forward to hearing other stories.

Kristy :slight_smile:

2

Hi Kristy,

I am so sorry you are dealing with this. Just knowing what is going on is very helpful. There are lots of articles and advice on here that will help, and also lots of support. It really does get better and you will learn to manage this and do a lot of the things you used to. It is a huge adjustment, but focus on staying as positive as possible, and giving yourself time to let your brain settle down. Your mental state will be just fine…there is no damage, and as symptoms ease up your mental clarity will improve, too. Don’t push yourself too hard, and give meds, diet, lifestyle changes a chance to start working. Pay very close attention to your mood and don’t let depression or anxiety take over, b/c it will make it much harder to manage this. Wishing you luck!

Jen

3

Have you done the elimination diet to try and figure out possible food triggers? That is where I have been for months and it is, of course, possible to live without so many foods, but hard. But it is very helpful for many. just an idea for you…

4

Hi Kristy, I’m sorry you’re feeling so bad but it’s good now you have a diagnosis to work with.

One thing in your post struck me, you said that sometimes your dizziness is worse after eating. This is something I’ve had too and it used to really confuse me, I had no idea how chewing could make me feel dizzy!

What I’ve eventually realised is that my VM seems to be triggered by clenching my jaw muscles and grinding my teeth in my sleep. The result of the clenching is a lot of muscle tension in my face, head and neck and this can sometimes be made worse by eating/chewing, the increased muscle tension then triggers dizziness and other symptoms. I don’t know exactly how it works, but I do know that the muscle tension in my jaws seems to have a lot to do with it.

If you’re finding yourself dizzy after eating then maybe you have a similar issue with jaw tension? Just something you might consider.

5

Hi

I felt very similar to you in terms of being able to accept the illness. Once I actually accepted that I was ill and that this might go on for a long time, I started to feel better and begin to try and deal with MAV in a logical, structured way. I think you have to accept a problem before you are able to fully solve it. Have a read around this forum and you’ll find that there are many medications that can help tackle MAV - from my own experience, some have very little side effects.

I am sorry that you had to give up your fire-fighting job - but perhaps this might be a blessing. I imagine fighting fires and saving lives is not exactly a low-stress job. As for the gym - I would stay away from treadmills, steppers and exercise bikes. This is because you are moving, but not travelling, which will likely confuse your brain and make you more dizzy. For me, I also get car sick - but it does get better with time. Try not to drive like a nutter as our brains find it difficult to reconcile the g-forces experienced with the visual information entering our eyes.

Other than that - it’s important to stay healthy in body and mind. Laugh a little - as I did when I read that you sent yourself a package :lol: We make silly mistakes like this because our brains are working overtime to keep us balanced - at the expense of our cognitive ability.

Best regards

Sailesh