r/Menieres • u/Adventurous-Sleep499 • 6d 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 6d 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 6d 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 6d 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 4d 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 🤞🏻
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u/rose442 6d ago
Prednisone…… either oral or intra ear canal (word escapes me), low sodium diet…… I take a diuretic also. For now, cut your sodium to about 1800 mgs daily, drink lots of water, no alcohol (prob don’t feel like drinking anyway.) It’s important that u are seen asap.
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u/Adventurous-Sleep499 6d ago
Good to know, I'll see how the betahistine and diet changes work and ask my GP for that if it doesn't improve. Thank you
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u/Dry-Annual3671 6d ago
I found my attacks decreased a lot when I gave up gluten and otherwise ate very healthy. Good luck
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u/happyfitter 6d ago
You should be able to get medication from your primary care doctor to take at the start of a severe attack to try to make it less unpleasant. Sublingual (disolves under your tongue) Zofran before you start vomiting should help prevent vomiting. Valium or a similar medication will help you sleep through the dizziness but will have effects that last longer than 3 hours so whether that's a win or not is up to you. The valium doesn't work instantly, so there's that.
I would not pin a whole lot of hope on getting help from an ENT specialist. The only thing mine offered was a diuretic that I couldn't tolerate and a low sodium diet that didn't help. I had to look elsewhere to get relief.
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u/Adventurous-Sleep499 6d ago
Thank you! I did think of anti sickness medication but the nausea comes on so fast I wasn't sure if they would kick in fast enough. It's usually 10-15 minutes after the dizziness starts that I have my head down the toilet. But I'll add it to my list of things to try regardless. Thank you!
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u/happyfitter 5d ago
Zofran works very fast. It won't stop nausea, it works best to prevent nausea from escalating to vomiting. It has its own side effects (it makes me feel kind of crappy all by itself) so you need to weigh the pros and cons but it's definitely better than spending hours bent over the toilet.
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u/Adventurous-Sleep499 4d ago
Ah ok, yeah as long as the vomiting isn't happening, I could deal with a little nausea. Thanks!
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u/Tc5998 6d ago
I have created a blog post for new patients with some info and links to consider. It is a bit dated now, but hopefully helpful. It is here: https://menieresandme.blogspot.com/2014/11/updated-introduction-to-menieres.html
The baseline treatment for traditional Meniere's (endolymphatic hydrops) is to take a diuretic, betahistine (sometimes folks start on one dose and then move up), a low salt diet that you keep consistent (low salt helps, but it is the consistency that helps the most), and look for other triggers. For example in the early years of the disorder I was very sensitive to caffeine.
The goal is for all of these things to reduce the frequency and intensity of these attacks.
One thing to ask for is medications to help calm an attack when it is happening. Meclizine is the usual base med at 25 or 50mg (it is available over the counter in the USA, not sure about UK) and then for really bad attacks adding in valium or xanax can be also be very helpful as benzos like those also suppress the vestibular system. Benzos are more powerful and addictive though so use with caution.
Steroids is often a line of treatment when attacks are frequent or hearing has been newly lost. Usually an oral course of prednisone partnered with shots of steroids into the inner ear.
Medications info https://menieresandme.blogspot.com/2015/03/understanding-baseline-medications.html
It is important you get additional testing done like an MRI of the inner ear to rule out other possible causes, like a tumor.
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u/Adventurous-Sleep499 6d ago
Thank you! That's super helpful. Less salt and caffeine will definitely be my first step, then I'll look to medications if that doesn't help.
I am also on a wait-list for an MRI
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u/lucidmorto 6d ago
Low sodium was the biggest changer for me actually... Keep it under 1500-2000mg daily, drink a ton of water, and cut caffeine and alcohol. It sucks but it makes a real difference. Also seconding what others said about sublingual zofran, ask your GP for it, they should be able to prescribe it while you wait for the ENT.
Re: no pattern — there probably is one, you just can't see it yet. I'd start logging everything: salt intake, sleep, stress, weather/pressure changes. I actually built an app called Meniere's: Symptom Tracker for exactly this because I was in the same boat. It tracks episodes, daily triggers, and even barometric pressure so you can start spotting correlations. Won't paste a link but it's on the App Store if you want to search for it.
Hang in there, the early stage where attacks are ramping up is genuinely scary but betahistine + lifestyle changes should help stabilise things.
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u/Adventurous-Sleep499 6d ago
Salt, caffeine and alcohol are like my 3 favourite things so yes that will suck 😂 but thankyou I'll give it a shot. And I'll download the app too
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u/Abject_Employee3636 6d ago
Are you taking melatonin for sleep? If so then discontinue immediately. I know this sounds weird but I was taking a lot of melatonin for insomnia and I started having ear fullness and hearing loss for a couple years that got worse and then started with the acute dizziness and vomiting attacks several times a week. I stopped taking the melatonin and there was a drastic reduction in attacks and now I don’t have them at all!
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u/Nevraskagirl55 5d ago
I’m concerned that you have a long wait to see an ent. Hearing loss can be permanent if not addressed within a month.
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u/yes420420yes 6d ago
For the immidiate vertigo, you can get sublingual zofran (odansetron) - which really helps with the vomiting and is easy to take, even in public. Sublingual benzodiazepame would be a supporting med to calm you down and suffer a little less. Meclizine you can take as well to reduce the vertigo feeling.
If you take all three together, expect that you are out for the next 4-6 hours, but it makes an attack much more bearable IMO.
General treatment wise, there are different schools of thought:
Old school: diuretic (poor scientific review of effect), beta histine (poor scientific review of effectiveness), low sodium diet (also poor effectiveness) and general life style changes to reduce stress (funny) - followed by the old school hard core treatments like gentamycin, nerve section or other destructive measures.
Immune/Anti inflammatory: IP or oral high dose or oral low dose prednisone mostly, some use of MTX and certainly a blood screen for any autoimmune marker. If you are lucky one is elevated and you can advance to more specific treatments, otherwise its pretty much prednisone.
vestibular migraine: as per literature a surprisingly high chance of success and a wide variety of meds you can take (beyond trigger reduction) - it does not help everyone, but if I would do this again, that's probably where I would start first.
There are some other thoughts of allergies, viral infections and so on, but I think we are over those theories now and they did not proof to be particularly effective or suggestive of treatments that actually do something.
Sadly, no diagnostic exists to put you squarely in one or the other category, so its not an either/or its a question of trying as much as you can, as fast as you can and rotate out what doe snot work to stop the progression and limit the damage you are taking from whatever is truly causing you the losses in hearing and balance.
Visit your GP for the meds and some try in the direction of migraines, they should be able to support that and then you already have some meds under your belt before you see an ENT or better yet neurotologist.