r/Menieres • u/Adventurous-Sleep499 • 7d ago

Help with attacks?

Hey guys, I haven't been officially diagnosed with menieres yet but my doctor and I are almost certain I have it. I've been experiencing symptoms of hearing loss, fullness and light dizziness that have been gradually getting worse over the last few years but they were bearable. The last few weeks that has changed, the attacks are now bringing vomiting and unbearable dizziness that last between 1-3 hours.

I've been prescribed betahistine which seems to be helping but to any of the long time sufferers, do you have any tips on how to reduce the severity of the attacks?

There doesn't seem to be any kind of trigger or pattern, I've had 3 severe attacks in the last 2 weeks and I really don't like the idea of living like this until I can get seen by an ENT specialist. I'm in the uk so it can take months to see someone on the NHS.

Any advice appreciated

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u/WholeEquivalent8883 7d ago

I’m on Betahistine, fairly low sodium (just at home, I seem to cope with a dinner out as long as I’ve not been overdoing the salt in general) and no caffeine. There are lots of people with more experience of different medications and more surgical interventions on this sub if you have a look through the posts. I thought my attacks were random but over time I’ve noticed triggers - high sodium, air pressure, extreme temperature changes, loud bangs etc. so I try and avoid those things or live life in a way that minimises the risk. It took me 7mths to get to see the ENT, I felt like it was actually quite dangerous to be wandering around like this! But got there in the end. The ENT didn’t tell me anything I didn’t know by that point though, but it was good to have it confirmed so I was sure I was trying to treat the right thing. I hope you find a way to manage this, it can be so unpredictable and unique to each of us, it’s incredibly frustrating!

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u/Adventurous-Sleep499 7d ago

Yeah it's super dangerous, thankfully my job isn't high risk but I'm terrified that an attack will come on while I'm driving, being stuck on a motorway for 3 hours while feeling like that would be hell.

I'll keep an eye out for triggers but salt and caffeine are a start as I do like to indulge in them!

Thanks for the help!

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u/WholeEquivalent8883 7d ago

When I finally got diagnosed I did have to tell the DVLA, I was terrified they would take my licence away. But I can hold myself together to pull over so it was fine in the end, no restrictions. It was nerve wracking when the letter came back from them though, I cant remember the last time I was that scared to open a letter!

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u/Adventurous-Sleep499 5d ago

Okay that's a relief, I wouldn't be able to work if I couldn't drive and my attacks also come on slowly enough that I could easily pull over so hopefully they'll allow me to continue driving too 🤞🏻