Persistent postural-perceptual dizziness

[mally1982]

Hi. I'm hoping I can find some answers/help on the community.

I had a vertigo episode around 10 weeks ago. Since then I have felt dizzy all day every day! I have fullness on my right ear and tinnitus. My ENT consultant believes I have Meniere's disease. I am scheduled for an appointment with the audiology dept which will confirm or not.

However I didn't think Meniere's disease caused constant dizziness? Please correct me if I'm wrong. I have not had vertigo since the first and only attack. I stumbled on an article around persistent postural-perceptual dizziness and the symptoms are exactly what I'm experiencing. I know I'm not a doctor and we all try to find answers and self diagnose but it is uncanny how similar my symptoms are. For instance my dizziness is at its worst when I'm in a supermarket or busy place with fast moving objects and sounds. It is far worse when I'm walking and basically disappears when I'm laying down. There is an element of anxiety attached to it as I now avoiding these situations because of how bad I feel doing it. I have struggled mentally with this condition as i first I believed I was imaging it or that it was panic attacks. It absolutely is something physical that has changed with my balance system or inner ear. I'm really worried as I don't seem to be getting any better 😪 . Any help or advice would be strongly appreciated. Cheers

[Happyrosie]

I’m very sorry, mally, that you are feeling like this and I’m absolutely astonished by the way you’ve been treated, tbh.

I don’t how how doctors distinguish between menieres, BPPV and labyrinthitis but it sounds to me, a non medical person, that you have one of these. Look all three up on the NHS website.

Treatment is firstly some anti nausea pills, as you have dizziness. Have you got these? They don’t cure but they help. Personally I was prescribed (and occasionally still take) prochlorperazine, which tones the dizziness down.

Second treatment is brain training exercises. Personally I find the ones on the website of Brain & Spine Foundation (search for vestibular rehabilitation exercises on their site) best. Start with the ones where you sit and move either head or eyes. They train the brain to believe what your eyes and body are telling it not your ears. Please persist with these. They can’t it hurt you and Once you’ve done them a few times they are quite calming, which will help your mental struggles.

If after two weeks you are not improving then consider the Eply manoeuvre (on the Brain &Spine site).

Please do come back to us on this forum if you think we can help further.

[Diamondc]

Hi my symptoms sound similar to yours so you are not alone although I've found it hard to explain to my GP etc. I had a dizzy spell in November which also caused brief ringing in my left ear. Over the next few weeks I noticed I had developed a swaying/rocking sensation as if I was on a boat which seems to get worse in busy places like supermarkets, coffee shops, standing in ques etc. I describe it as a strange off balance sensation and I am also very sensitive to sound. I was hoping this would disappear over a few weeks but I still get it although not always daily anymore. Like you I'm convinced I have PPPD after doing some research and watching some videos on it. I also have a roaring noise in my left ear that comes and goes and fluctuates in volume. I've been to an ENT consultant and had an MRI scan which was fine so they've told me the noise in my ear should settle and I might need vestibular rehabilitation for my balance issues. No mention of any other possible causes. In my area there aren't any NHS vestibular rehabilitation clinics at the minute so I'm now considering going to private physiotherapy or a chiropractor to check if my neck has something to do with it as I have a feeling it might be out of alignment. I will try anything at this stage as I'm so fed up of feeling like this and it has caused me so much anxiety over the last 5 months. It's very frustrating and hard to explain my symptoms to anyone as I am usually met with a blank face especially as I've now had a clear MRI. Sorry no real advice but your post sounded so familiar to me! Unfortunately it doesn't seem too common, if you get any answers let me know!

[Ruggedman in reply to Diamondc]

Hi there,I read lots of texts on this site and I must say it's a frustrating thing to be dealing with everyday. For the past 12 mths I have been coping with ringing in the left inner ear along with dizziness. Sometimes veritgo. I am taking daily supplements, Ginkgo Biloba and Lipo Flavonoid. Also having caffeine free herbal tea. The biggest anxiety for me personally is getting a vertigo expisode. You don't know when it could happen so it creates anxiety. Thank god it's more dizziness and pressure most times. I only wish this could go away. Life style changes are important I feel to get some control of this debilitating issue. I wish everyone a great day. Thanks for sharing your thoughts! 😊Right now I think there's a tiny improvement but still long ways to go!

[Beagleears]

I'm so sorry you are struggling with dizziness every day. I know how you feel I have struggled with this and a general sense of off balance for 2 years now and it was really debilitating. Anyway my GP prescribed betahistine and it has solved my dizziness. I'm so relieved and happy to feel balanced again. Might be worth a try? However my tinnitus and fullness in my ears and itchy ears hasn't changed. I have a review with my GP at the end of the month and will see if she can help with the itchy ears at least as its really irritating. I use earol spray every day to soothe my ears. I was told to do this by the nurse who clears wax out of my ears every 4 months. Yes I have to get them cleared 3 to 4 times a year! Does anyone else have to get their ears cleared out regularly is it a problem because of tinnitus? Anyway I hope you feel better soon take care.

[Louisweb]

Thanks for sharing, u definitely not alone. That's the similar case I gone through 2 years ago n will like share. Have vertigo attack during those times , feeling my head spinning, dizziness, both ears startes to feel congested, kind like under water feeling, you know what I mean. Ever since my entire life changes, I cried, frustrated, telling myself why it have to be me, n why i have to suffer like this n I dont deserved it. Quickly I have developed sadness, anxiety for couple weeks. Ever since T hissing started to ring on left ear. Went to ENT n all specialist, is absolutely no cure. Just some medication to stop vertigo n Xanax pill. Thank GOD my Vertigo n ear fullness went away after 3 months... (BBPV self treatment cure my Vertigo) n the bad things is my T is there everyday 24/7 on my left year till now. Apparently I kind of use to it right now after 2 years plus... training my brain to ignore that T n life startes to gets better day by day. ** So my advice here only 3 words to describe my experience* Acceptance, Habituate, Life moves on* who know one day T will reduce n fade away soon. Hope you will get better just like me, n your T may fade away. Take care Mally.

[DizzyMess]

Hi Mally. I’ve read lots of posts and yours sounds the closest to mine. I am with you - it’s horrible. I struggle when going into a bigger space like a supermarket or a wide reception area or something - I feel like I’m swaying and then overcompensate, also from a large space into a narrow corridor. Sort of spacial awareness? I’ve had a private ENT and have an MRI on Friday. He was sure it is not menieres which surprised me. He took me off betahistine and since coming off it feel more like myself like a fog has lifted. I really hope you feel better soon - I do feel fur you.