Do you guys experience semi-vertigo, where you have episodes that don't involve spinning but instead feel bouncy, as if your surroundings are moving? I used to experience spinning vertigo, but after taking betahistine for 3 months, I now experience this type of dizziness instead. Has anyone experienced something similar?

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For me, the vertigo is manageable as part of just what is. The hearing fluctuations are crippling for my effectively being employed and hosting meetings and such. If I can't hear, I can't work in software implementation, where I've spent the last decade building my career.

Anyone else in a similar boat?

I’ve been taking it for five days now, but I don’t feel any effect at all. Could you share your own experiences? I really need some hope.

Hello. I have been taking prednisone on a daily basis for almost a year now. I have cogan syndrom, and I first started with 60 mg a day which was gradually reduced to 20 mg. My issue is the side effects. Besides the weight gain, random hair growth in unwanted places, and mood/ energy shifts, I have also noticed a huge change in my hair. The texture is horrible, it became frizzy and dry, and it s falling considerably. This combined witht he other side effects has deeply affected my mental health and how I perceive myself.

I am wondering if any of you have experienced the same thing, and If you can advise me on what to do in regards to my hair situation.

Thank you in advance.

Had a hydrops attack Wednesday evening/thursday got prednisolone thursday evening. Had it for 3 days now and it does not seem to be improving the hearing (low freq hearing loss)

Should I continue the course or go back to the nhs to see if I can get an injection?

As the title suggests, I have a cold. My ear has been ringing almost non stop the last few days, not sure if it's the increased pressure in my head and sinuses or a total coincidence. Anyone else have this or have a way to ease the ringing?

I’m 26, had vertigo since 2020. I’ve been tossed from dr to dr, had so many scans. been told many different things. my current specialist was willing to do surgery for menieres, but then the PA who works with him said it sounds like I have migraines and put me on migraine meds that don’t help. now I’ve been on seizure meds for 7-8 months with no relief.

can’t workout. can’t have sex or masturbate (my biggest trigger and will give me instant vertigo 100% of the time). yet the PA said there isn’t any other meds to try. she just seems to have given up on me. she said it sounds like a vascular issue but didn’t elaborate…so if my sex-related vertigo is from some vascular issue why am I not getting that checked out?? why are you okay with telling me there is nothing else to help me while I’m suffering??? even told her my left ear hearing was way worse and she didn’t say anything about it. haven’t had hearing testing it like 3 years. i get ZERO light sensitivity or head pain and have no migraine history, yet she says it’s migraines causing the vertigo from sex/orgasm…make it make sense please. no migraine med freaking helps.

should I try to see a new doctor? I’m worried they’ll just shrug and send me to another doctor like the rest of them did. I’m worried I will never be able to have sex without having an attack again. I can’t live like this forever. I can’t.

*sorry for the rant, I’m angry as you can see :(

For context, see this thread. I started experiencing symptoms over 7 years ago and then a few months ago had a sudden vertigo attack that has probably damaged my vestibular system.

I see an ENT (one familiar with the disease) a few days from now and the last time I saw him was three months ago, when he prescribed betahistine for the first time (3 doses at 16 mg). I ordered the betahistine from a local compounding pharmacy and just ran out, but luckily was in Mexico last month, where I picked up some batches of 24 mg tablets (only denomination available) from pharmacies. I've been taking the betahistine for two months and it may have slightly improved my hearing, but I'm not certain what else it may or may not be doing. I'm also completely off diuretics.

Currently, I'm expering the following:

-slight disconnection with peripheral parts of my body; my feet feel "floppy", my fingers slightly shake and so my hands feel "clumsy", feeling like I have to "carry" myself around often, limited sensation in parts of my body that used to be very sensitive (e.g. erogenous zones); it's bad enough that it affects precise movements that used to be very easy and natural for me, and that's even before trying athletic activities

-persistent significant tinnitus along with the standard hearing loss in the bad ear

-small tinnitus, occasional faint pain, and occasional minor fullness in the good ear; not sure if the hearing is materially worsening

I've been generally doing vestibular exercises (although not religiously everyday), and I've felt improvements in the condition over the past ~3.5 months. Additionally, I haven't had any attacks, but I'm not optimistic that I'll recover fully to where I was before.

I'm also not sure if I have any triggers, necessarily. I haven't drunk alcohol since before the vertigo attack but I haven't massively reduced my sodium intake and changes in ear pressure (e.g. flights, storms) don't affect me. I feel as if I could be doing more, but I frankly don't know where to begin and what to do differently. When I was just dealing with hearing loss, it was one thing, but with the vestibular issues, I'm much less confident about my lifestyle than I used to be.

Any ideas for reducing stress during flares? 25+ year sufferer - active vertigo and vestibular migraine has limited my driving and even the ability to keep appointments for things like massage, etc. exercise seems to exacerbate it though I can do restorative yoga. I don’t drink or smoke anything. I have been doing some sewing, which is nice, but starting to feel very hemmed in. What haven’t I thought of?

Hi, newbie to the group here, but not a newbie to Ménière’s. I was diagnosed in 2011 and it has been quite a journey. I wanted to ask how many people with Ménière’s here have adopted a low sodium diet and whether it has been successful in lowering symptoms?

Hello,

I’ve been on this subreddit for a while but never posted. But I had a change in my Ménière’s symptoms this week and I’m wondering if anyone has similar experience.

I have been dealing with Ménière’s for a couple of years. My usual episode would start with days or weeks of diplacusis that get progressively worse every day. Ear fullness and tinnitus usually show up after the pitch in my bad ear gets quite distorted. Then my hearing recovers and I get a vertigo attack or vertigo attack comes and my ear recovers the day after. A couple of times I did not even get a vertigo attack.

A couple of weeks ago I went to an osteopath session for the first time to work on my tight neck and shoulders. The day after, I had slight ear fullness but without any diplacusis which was a completely new thing. This past Monday I went to another session and for the past three days, certain pitches have been making me dizzy. I’m an orchestra musician and it’s been very disorienting. Today I woke up with with a feeling of vertigo but without any spinning, diplacusis, tinnitus or ear fullness. I simply struggle to keep my balance when I walk and moving my head around makes me lose my balance. The only medication I take is Stemetil and while it always helped whenever I started to feel like a vertigo is coming, it is not helping at all today. Massaging my neck seems to aggravate the feeling of unbalance.

Has anyone experienced something like this? How have you moved forward with it?

Thank you for taking the time to read!

So do people take it temporarily when they feel symptoms coming on or do they take it all the time to help keep symptoms at bay? I’m confused.

Has anyone seen an Immunologist for this?

I am 100000% steroid dependent at this point and my biologic drug isn't working to get me off steroids. I can't even go lower than 35mg now. (Please don't lecture me about the danger of steroid use. Trust me, I know by now.)

I've heard that immunologists can help figure out where/why the inflammation is happening. I'm very curious if anyone has had any luck with one in the US. I'm willing to travel anywhere at this point - even outside the US.

Also, props to anyone who has been able to continue their life once their hearing has dropped significantly and they're STILL left with horrible tinnitus. I can't take more than 24 hours of it without seriously considering ending it all. Not to be grim on here, but this disease is hell and it just continues to take more and more away from the people who deal with it. I'm so sorry to all of you.

Hi, I'm interested if there's anyone who had the injection in both ears

I have to travel for work in the coming weeks. Since I was diagnosed, I've been eating every single meal home cooked as I've noticed that high sodium is a trigger for me, leaving me in a state of vertigo for 24 hours or more. I'll be staying in hotels, on airplanes, etc, and won't have a kitchen in my hotel. Also as I'll be at events, there will be food there and I'll get hungry, obviously. Are there standard go-to restaurants with good and affordable options that you typically go to? This will be in the east coast and midwest of the USA by the way.

Thanks for any tips

I know this has come up before here, and there's a range of opinions but I thought I'd add my own data point.

I started NUCCA treatments a couple months ago and the improvement has been significant. Since I started, I have had only one day of dizzy spells (previously they were several times a week) and my general feeling of seasickness (nausea, headache etc) is substantially reduced.

Everyone's Meniere's is different so who knows if it will work for you. What's odd is previously I identified gluten as a strong trigger of vertigo and dizziness so I would not have thought alignment issues played a role. But maybe it was cumulative.

Hearing loss and tinnitus is unchanged, my guess is that its never going to go back. But getting rid of dizziness and unsteadiness is huge.

To users of WeatheRX ear plugs and its app,

how large a change in pressure causes you to use the ear plugs; and does the direction of change matter?

Tested my hearing today and my right ear declined 50% from my last test. We’ll retest in 6 weeks. If the hearing doesn’t rebound, we’ll talk about hearing aids. He’s also giving me a round of steroids and diuretics.

That’s all folks.

Does anyone else experience this? Any tips on getting sleep without additional drugs?

Today was my 25th shot. I get it every 6 weeks. This happens with every shot.

Has anyone tried peptides for their Ménière’s? Specifically their tinnitus? Anything actually work?

I’m going through the stages of being diagnosed with menieres, I’ve just been put on Betahistine, does this help?

I’m so scared, I’m a teacher and currently just unable to do my job and the thought I might be feeling like this long term makes me think I’m going to have to change career, I love my job and really don’t want to do this. But the vertigo in the classroom is just too risky. I’ve also been having episodes where I just drop to the floor because my legs just give way.

Any enlightening advice would be great.

US resident here. I've been buying betahistine from a Canadian online pharmacy, since it's much less $$ than buying from compounding pharmacies in the US. Now it looks like none of the Canadian pharmacies will process orders to the US due to the new international mail rules that start Oct. 22. Has anyone found an alternative to both US compounding pharmacies and Canadian pharmacies?

Love that the US gov't has decided a trade war with Canada is what we need....

Steroid shots are the only thing actually helping calm my symptoms for now. I‘ve been getting them every 2-3 weeks for a couple of months now.

Lately I noticed that a few days after every shot, the discomfort, pressure and Tinnitus in my bad ear move over to my good ear. Todays hearing test also showed the First Sign of hearing loss in my good ear, with diminished hearing in the high frequencies (which is weird because Meniere is supposed to affect rather low frequencies in the beginning, no??).

Anyway, did anyone experience something similar? Not sure how go on from here as I have pretty much tried everything. If you have advice I am happy to hear it.