Hello, any advice would be great

New here, let me introduce myself 🤝
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Hi everyone,

Sorry to post again and ask more questions. I have had a night with zero sleep as baby has a cold so feeling down this morning which then makes thinking about the dizziness etc so much worse.

I looked up PPPD on the forum but couldn’t find too much really especially anything much about anyone having it alongside MAV and what the treatment and success is for PPPD? I mainly read stuff that questions if it is a diagnosis at all or if it is just the same as Mav? Do any of you know anything about it? My understanding is that it is a long term version of a disorder like vestibular neuritis when the body has not adjusted due to anxiety and so therefore you carry on with this dizziness.

I am frightened that that is what I have and it won’t be able to be cured. It terrifies me that I am facing this for my whole future with my children and that I will never be back to myself again.

I also don’t understand how I can have both.

I will of course be asking the ENT all of these questions when I see him on Thursday but suppose was just wondering what you all thought as a lot of you seeem to know a lot dizziness in general.

The other thing I have noticed that is strange is that I am better in motion especially when I drive. I am also better moving around that being sat down still. Does this make any sense to anyone?

Thank you as always for any responses on here.

K

X

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Kate,

There’s not much about PPPD on here because it’s a fairly new diagnosis.

However, I suspect what the doctor is saying is “MAV is making you anxious and that’s worsening your condition”.

Anxiety alone can cause a variety of symptoms and exacerbate existing ones.

So it’s really just MAV I suspect and your reaction to it.

Anyone with a chronic vestibular upset is going to feel very anxious, especially initially, so you are completely normal in this respect.

As you get used to the symptoms and as the treatment takes effect your anxiety will calm. Mine did. Over time the symptoms have waned.

Hang in there!

James

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Everybody’s symptoms are somewhat different. I remember @dizzy3 telling us she felt worse sitting still. As her MAV developed post partum could be something you have in common,

MAV’s very hard to deal with and much worse after a sleepless night with a baby with a cold. If I were you I’d try not to worry about the ‘Why’s’ and Wherefore’s’ of it all. Might be good idea to stop searching the internet if it makes you more anxious. Just live in the moment. One day at a time. Accept you have a medical condition that is causing your symptoms and tell yourself it’s likely to be with you for some time but it is treatable, most probably with drugs, and will improve with time. And remember, as @turnitaround says

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hey, you are going to get better. Not sleeping does not help. Drink lots of water and maybe a decaf so you feel nourished. I feel the rocking now only when I am sitting, I dont feel it otherwise. I can walk, drive, swim and move around almost without symptoms now. Too bad my work is on the computer, it makes me want to change jobs! For anxiety, try to sit still on the floor and tell your brain: you are not moving, for like 5 minutes. Then try to ignore the sensation, the more you think about the worst it gets.

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