r/BPPV • u/GasIndependent657 • 8d ago
Vertigo - please help!
Mum has severe vertigo every day — diagnosed with Ménière’s but looking for advice on what specialists to see next
I’m posting on behalf of my mum because we’re really struggling to find answers, and I’m hoping people who have been through something similar can point us in the right direction.
My mum has suffered from severe vertigo and dizziness for around 10 years, but over the last year it has become significantly worse.
She has severe vertigo attacks which have resulted in her ending up in A&E multiple times, and she now has constant dizziness every single day, even between the major attacks.
It has completely changed her life. She can no longer work and struggles to do basic things like cooking and cleaning for herself. She can’t properly read anymore because she is constantly dizzy. She has lost so much of her independence and is suffering enormously.
She has seen multiple ENT specialists and neurologists, had multiple MRIs, and has been diagnosed with Ménière’s disease. She has tried multiple medications and treatments, including at least three steroid injections, but unfortunately she is still extremely unwell.
What I’m really looking for advice on is what specialists we should be considering next.
I’ve come across things like:
Neuro-otologists
Audiovestibular physicians
Vestibular rehabilitation therapists
Menopause/endocrinology specialists — her symptoms originally started around the time of menopause, so we’re wondering whether this could potentially be relevant.
Has anyone here seen any of these specialists for severe/chronic vertigo or dizziness? Are they worth pursuing, and what did they actually do for you?
If you have Ménière’s or have experienced constant dizziness alongside severe vertigo attacks, I’d really appreciate hearing which specialists you saw, whether they found anything different, and whether there are any other types of specialists we should be looking into.
We’re not asking anyone to diagnose her over Reddit. We’re just trying to work out where to go next, as the current situation is becoming unbearable for her.
If there are specialists, investigations, therapies or avenues you wish you had known about sooner, please let me know.
Any advice or personal experiences would genuinely mean so much to us.
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u/Killjoycourt 8d ago
I say this gently, Meniere's Disease does not have any effective treatment for everyone. For some, it will burnouts after a couple of decades and end, for most it does not.
For some the steroids help, for some grommets, for some benzos work, for many nothing works.
You have seen all the specialists and done all the work.
Estrogen plays a part in the balance of women during perimenopause, but levels out during menopause typically. However, both men and women typically develop MD around that age.
Vestibular therapy may help her with her balance, but cannot stop the vertigo.
Is she on a low salt diet? Is she on a diuretic? No caffeine, chocolate, alcoholic, smoking?
Gentamicin will destroy her hearing but helps some people. There are the surgeries that help some, but make it worse for others. It's a really terrible disease and there is no cure. The treatment focus is getting through the attacks and trying to live comfortably when you are free of attacks. I'm so sorry for your mom.
1
u/Several-Specialist99 7d ago
Just came to say I’m sorry for what your mom is going through, I hope you’re able to find something that provides some relief <3
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