New here, distressed, menieres vs VM, daily vertigo

New here, let me introduce myself 🤝
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Hi, Im new here…scared and seeking wisdom from anyone in similar scenario. I was dx with Menieres in 2014 when I was about 29. Has been largely “in remission” and no issues for about 3 yrs. Prior triggers would be ear fullness and one or two bouts of vertigo once or twice in past. In the last month my hearing has ratcheted down to about 30% along with ringing/tinnitus thats fairly constant.

More problematic, I Have been having daily vertigo (anywhere from 1-3 episodes a day) for approximately 3 weeks, and just was seen for the first time in years by Dr Rauch at Mass Eye and Ear.

He feels I could be have both VM as well as Menieres but unclear how to differentiate given their compounding and intertwined presentations.

Currently trying:

ITP steroids (NOT ready for gentamycin but its not out of question if this continues) have had one, waiting 3-4 weeks to determine next steps with Dr Rauch, have had attacks in 2 days since injection.

Triampterene daily/balancing salt intake

Have been seeing chiropractor who is adjusting major issues in my neck including atlas bone and other misalignments.

Accupuncture has generally provided relief for me during ear fullness in past. Have had minimal relief this time around

Headache symptoms are either temporary or on/off. Id say the least problematic symptom. Usually more in AM or PM but intermittent.

Vertigo is by far the most problematic issue and had an attack while driving yesterday, rendering me super stressed and am now freaking out about loss of independence.

Has anyone had a “flare” or vertigo lasting this long and any positive insights to share? I know many people have them that last months and im not sure how i would be able to cope/parent/work if that were the case. Has anyone “come out” of a pattern similar to this?

Also of note I am hoping for a second child and as a result am not able to take any preventitve VM meds at present.

Would love any encouragements or recommendations, feeling very scared and uncertain whats next.

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Welcome Sadie, but sorry you are suffering.

Yes, this can be tricky … there’s also the diagnosis of Secondary Hyrdops btw, which has the same symptoms as VM/MAV and similar diet … but I digress.

For Menieres to be confirmed I think you need to have low frequency hearing loss … otherwise it may not be that …

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Hi Sadie - welcome aboard.
As you know, there are many similarities between Meniere’s and VM and as James has said the key element with Meniere’s is also hearing loss, which you have highlighted as being an issue for you.

It is frightening when you have daily vertigo and very scary if it kicks in when you are driving - that also happened to me and unfortunately I couldn’t drive for 5 months. I was off sick for that period of time too as it took that long for my overloaded, stressed brain to calm down and feel normal again.
The vertigo didn’t last that long, but my head felt as if my brain was vibrating and doing very weird things for about 3 months. That was in 2018 and I am much better today and I eventually got back to work until I retired in 2020.

I am sure that you will improve, but it can take a bit of time to sort out the best plan of action - for me it was Pizotifen plus the 6 Cs diet and, easier said than done, stress avoidance. I no longer take Pizotifen and I am relaxed about my diet, although I no longer drink red wine :disappointed: or eat strong cheese.

I still have ringing tinnitus 24/7, but my hearing is okay, in fact I tend to have hyperacusis. I also have ear and head pressure especially when there is a change of air pressure - that also tends to ratchet up the ringing. However I haven’t had vertigo since 2018 and am able to ignore the tinnitus.

Be reassured by the fact that you had a remission period of 3 years before and this can happen again.

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Very like me Jan, worst symptom nowadays is the continuous if fluctuating tinnitus. Mine’s very much a hiss most of the time, lol. My ear is also sensitive to noise and seems to try to “close down” whenever there is something noisy and higher pitched.

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Mine started off as hissing too James, but graduated to high pitched ringing. I have got used to it now, but it took awhile. The hypersensitive hearing can be a nuisance though!

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There’s nothing constant but change … let’s look at this as more evidence that you will eventually be free of it.

Take note @SBvert, it gets better!

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