New to the Community, Looking for Support (particularly with vestibular neuritis)

Hi everyone, I’m new here so thought I would join the conversation!

I’m 22 years old and suffered my first ‘episode’ in September last year. It started when I fainted, and then I had lightheadedness which lasted constantly for 3 days or so. Since then, I have had lightheadedness on and off and another major episode in January of this year, which lasted a whole month. The lightheadedness was constant - I woke up with it and went to sleep with it.

I’m in the middle of my next episode, and am struggling to get answers from my doctors.
They think it’s vestibular neuritis. Has anybody been diagnosed with the same thing?

My symptoms are that I feel off-balance, nauseous, have a minor dull headache and feel generally not quite with it. Things do not look like they are spinning but I do also have a sense that something is moving.

Please help! Thank you :slight_smile:

Hi

Welcome. Sorry your current problems have pushed you towards this forum but you’ll find alot of information, support and advice from fellow sufferers so you’ve taken a good step in the right direction by coming here.

Have a good read through the Welcome post and USER Support Wiki pages. Lots to study and absorb there.

You’ll surely soon find someone on a forum with a diagnosis of Vestibular Neuritis. Treatment for most vestibular conditions is remarkedly simiiar and the conditions overlap so much it’s often impossible to see any space between them. You’ll find most people here have had several different diagnoses over a period of time. Most GPs have little detailed knowledge of vestibular disorders. If you are unhappy with your diagnosis your next move should be to see a neuro-otologist otherwise go ahead and follow whatever treatment plan you have been given. Alot of treatment options for these conditions is trial and error. If one drug doesn’t work, you move on to the next. Meanwhile have a good read around and you’ll end up knowing more than all but the top specialist yourself. Don’t shut yourself away. Keep as much of your normal life ongoing. Get out and exercise. Safely, away from water and cliff edges. Listen to your body.

All the best

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Welcome to the board. Helen is correct.

Just to say though that VN is both a rather dated diagnosis and it is acute not chronic. If your condition is ongoing, it is not VN.

The modern equivalent diagnosis is Acute Unilateral Vestibulopathy (part of the reason is they are no longer sure VN is caused by a virus):

You should seek another opinion, probably from a balance centre. It sounds a lot like MAV to me.

Keep us updated here, there are many with exactly the same symptoms as you on this board.

Thanks so much for your support. It could not come at a better time! I will do exactly that - I’m going to a balance centre and trying to stay doing my normal life as much as I can. I’m a spin class instructor (quite ironic when you think about i!!) so it hasn’t been easy! But I really appreciate all your kind words and will keep going with seeking answers and a treatment that works for me. @turnitaround @Onandon03

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