BPPV any sufferers?: I had my first bout of BPPV... - Thyroid UK

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BPPV any sufferers?

Silver_Fairy profile image
16 Replies

I had my first bout of BPPV - Benign Paroxysmal Positional Vertigo - about 4 yrs ago, then another 2.5 yrs ago and then one last night. This one was by far the worst with a bad feeling of nausea.

Fortunately, the nurse at the hospital, when I had my first attack, knew exactly what it was and told us to look up 'Epley Manoeuvre' on YouTube. Even more fortunate, my partner, found the method and did the manoeuvre that evening. Success, both times.

But, this time, I think it will have to be done more than once. Most of the 'dizziness' (trust me dizziness does not start to describe the feeling!) has gone and so too the nausea, but some still remains, unlike the last two times.

Anyone else had this? Could it be, in some way, connected to thyroid problems?

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Silver_Fairy profile image
Silver_Fairy
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SeasideSusie profile image
SeasideSusieRemembering

Silver-Fairy

I have had one episode of BPPV, GP diagnosed and mentioned Epley Manoeuvre but didn't offer to do it. I found it on YouTube and did it myself. It took 3 days (did the manoeuvre once each day) before it took effect. Personally, I don't believe it's connected with Hypothyroidism. I've been hypo since around 1974/1975 and didn't experience it until about 4 months ago, and it's only happened the once (fingers crossed!). Also, I have a non-hypo friend who gets it.

Anthea55 profile image
Anthea55

Yes, I had it a few years ago and it really is debilitating. The Epley manoeuvre worked for me.

The Epley manoeuvre works by moving crystals in the semicircular canals of the inner ear to a different part of the inner ear. I assume you may need to repeat it if they haven't moved far enough or there are more crystals. Clearly you can't get at the inner ear, so it's a bit like those old hand held kids games where you move a ball round a hand held maze by tipping the toy backwards and forwards, if you see what I mean.

You'll find more if you google for it. This is the NHS page for vertigo.

nhs.uk/conditions/vertigo/

I doubt there's a link to thyroid problems.

SilverAvocado profile image
SilverAvocado

I looked the manoeuvre up out of curiosity. Can't believe (unfortunately can believe) that a doctor wouldn't do this with you! This seems to me exactly the kind of thing they should do, a possibly one-off treatment that can be performed there and then, and actually cure the condition!

If they won't do it they are not in the business of treating illness, they are just drug dispensers!

Not really surprising. Just another reminder that what doctors do in real life is not what you'd imagine a doctor is ;)

SeasideSusie profile image
SeasideSusieRemembering in reply to SilverAvocado

Absolutely agree with you SilverAvocado.

I can only imagine my GP didn't do mine because I had used up about 7 or 8 minutes of my 10 minute appointment. The maneouvere would take possibly 4-5 minutes.

I knew about it because I'd seen it on that TV programme "GPs Behind Closed Doors". I've stopped watching it now, I've come to the conclusion that it's all a set up, because in my experience there are no doctors who are that helpful or prepared to go to the lengths they seem to go to to help people, it upsets me when I know I can't get help for anything because those at my surgery tend to just dismiss everything. Latest example last week:

Me to GP No. 1 who diagnosed BPPV - "I mentioned 3 months ago about stabbing pains in my head and you said it was nothing to do with the BPPV you diagnosed at the time. I've still got it, and pressure in my head, plus nausea, plus lightheadedness, worried I might flake out when walking the dog. I spoke with GP No. 2 specifically about this 3 weeks ago, he said it could be arthritis in my neck, I've been doing the exercises he suggested, heat pack, pain killers, etc, but no better".

GP: "I don't know what it is, do you want some co-codamol?"

Me: "No thank you, I don't want to go down that route. Anyway, I think I'm not supposed to take it with hypothyroidism or COPD, one or the other, I think I read in the patient information leaflet".

GP: "There's no interactions with your thyroxine or inhalers".

Me: "I'd rather not take it, I'll stick with paracetamol".

GP: "Did you come here today wanting medication?"

Me: "No. I came here hoping to find out what was causing it and will it go away?"

GP: "Who knows what the future holds. Wait and see, come back in a week or two if it doesn't go away".

Tip of the iceberg, really, just the tip of the iceberg.............

SilverAvocado profile image
SilverAvocado in reply to SeasideSusie

The 'come back later' is so frustrating. I think they only believe in a symptom of they personally have heard all about it for a long time. But I've been too sick to visit them all the time!

I agree with you it's very sad and upsetting - the image of the doctor as someone that will investigate, like Sherlock Holmes, until they find out what the illness is and how to treat it. But in real life they are nothing like that, and no one to help us find out what's wrong :(

SeasideSusie profile image
SeasideSusieRemembering in reply to SilverAvocado

I wouldn't have minded the "come back later" if I hadn't already mentioned it 3 months ago - I'd already reminded him of that. I've told my kids, if I spontaneously combust ( :D ) or suddenly drop down dead then they can sue the pants off the surgery!

SilverAvocado profile image
SilverAvocado in reply to SeasideSusie

Yea, I agree. Sometimes it's not too bad, but other times it's a farce!

greygoose profile image
greygoose in reply to SilverAvocado

They wouldn't do it because they would have to actually touch the patient in order to do it! And, they really don't like touching patients!

Silver_Fairy profile image
Silver_Fairy

Thank you for the replies ladies. My partner is going to try again this evening. Im glad he's efficient as I would never have been able to do this on my own, I got so giddy just on the first move, I had squeezed up wadges of his jumper in my hand thinking I was going to fall off the bed!

Anthea55 profile image
Anthea55 in reply to Silver_Fairy

Googling for Epley Manoeuvre, I see there are things to do for several days after you've been treated. Did YouTube give you all that?

All the best. Hope it's successful this time.

Silver_Fairy profile image
Silver_Fairy in reply to Anthea55

Yes, you have to sleep with two pillows, not move you head in certain directions etc. I had it done again last night but I still have dizziness and nausea this morning. Im sure it was both ears to start with and I think one side has resolved itself, the other is being a tricky beggar!

suebob59 profile image
suebob59

Hi silver fairy,

I was diagnosed too last year after several dizzy turns that left me on the floor.

My GPs just said " everyone gets then occasionally and not too worry" I found this very hard to believe. Finally a young locum wrote for a appointment at our hospital to see a neurologist. The neurologist quite rapidly diagnosed BPPV after a set of tests for my balance and eye movement. He performed the epley manoeuvre on me. I think my scream at going dizzy again was heard in the waiting room 😊but it showed which ear was affected. I followed up with a lot of balance exercises to take home. This seems to keep it under control, but just occasionally one gets you out of the blue.

It was the feeling of panic before diagnosis, now I try not to panic.

Silver_Fairy profile image
Silver_Fairy in reply to suebob59

Well done that locum!

Can you find the balance exercises online? Not seen anything about them.

suebob59 profile image
suebob59 in reply to Silver_Fairy

Hi silver fairy,

I'm not at home at the moment, but I'll find them and post them on my return at end of next week.

The one that that is easy is sit on edge of bed, stand up and turn completly around to the right and sit down.Repeat but turn to the left and sit. Do this as rapidly as possible about 10x each way. Try to do several times daily.

I think it stops the crystals getting stuck 😊

And yes I'm worse when tired or rundown.

Silver_Fairy profile image
Silver_Fairy in reply to suebob59

Thank you :)

Silver_Fairy profile image
Silver_Fairy

Does anyone find they get bouts during or just after a cold? Ive been run down since my Mum died and got a cold within two days of being back in the UK, its only just at a tail end now (nearly 2 months on) and my ears have been a bit blocked.

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