I had VN back in 2021. I undertook VRT and made a gradual recovery. I feel I'm having a relapse, or its recurred. I'm having spins, head pressure, and feeling 'off'. 

My 22 year old son is having severe visual issues but no vertigo or balance problems whatsoever. He has been diagnosed with vestibular neuritis but it has been 8 months and although his vision has improved, it still is not back to normal. Has anyone here had only visual issues? He also does have ear fullness and "popping" constantly. We live in Rochester NY, he has been treated by a neuro ophthalmologist who says his actual eyes are healthy but that it is a vestibular issue, an ENT who disagrees with the VN diagnosis because there are no balance issues, and neurologist who sees his nystagmus and says it is vestibular. He tried vestibular therapy for 3 months with no improvement but had significant visual improvement with a 6 day course of prednisone. He also experiences the sudden return and worsening of all his symptoms when he gets sick, he was out of work for 10 days this last time when he got food poisoning. All immune system tests for MS, etc are negative - in fact all his blood work, imaging, etc are normal!?

My name is Emma and I live in Australia. I was severely injured by 1P in Dec 2021- multiple reactions and a full body immune dysfunction. Bed bound for 8 months, mostly house bound for 2 years...slowly recovering. Now diagnosed with MCAS and POTS...I have created a website with what has helped me and may help others with long covid (PACS) or long vaccine (PACVS): Long Covid Recovery Kitchen

I was also featured in this magazine article: Surviving the unknown – Alive Magazine Wide Bay and quoted in this Australian ABC news article: The inconvenient patients Australia's COVID-19 response left behind - ABC News

My contact details are on my website. Please share my website. It is free. https://emmahansen81.wixsite.com/the-long-covid

My doctor has suggested a steroid  injection as I have have a shoulder injury but I am worried this will trigger my dizziness - does any know if this is the case? I know from experience HRT did enormously trigger symptoms 

Thank you

Sera

Not sure how I found this site - I probably clicked on a link while researching Meneires. Anyway, glad I found someplace to look for answers.

I started experiencing Vertigo symptoms about a year ago. I had two episodes, about a month apart, and after the second one, I sent a message to my PCP. She referred me to an ENT specialist and said that they would probably order vestibular therapy. Sure enough, they did. At my first session, the therapist tried to recreate the symptoms using various positioning techniques, moving my head around, tilting me, trying to balance on a treadmill, the whole gamut. He spent about an hour trying everything in the book and could not cause any vertigo. About the only symptom I got was a headache from all the yanking around. He finally said "There's nothing I can do for you". That was my first and last session. So much for vestibular therapy.

After a third attack, I went to the ENT, a really nice and attentive NP. She did a thorough exam and decided to order an MRI to rule out any brain tumor or obstruction. She did mention the word Meneire's at that visit. That was the first time I had heard of that condition. She also ordered a diuretic (triamterene) and said I should start on it right away and see if it mitigated any of the episodes. We talked about the tinnitus that I had been experiencing for a long time and she indicated that there really wasn't any help for that.

I had the MRI about a week later and a follow up visit with her after another week. We also did an audiogram at time. We went over the MRI which was negative. I told her the diuretic was wiping me out and I was not tolerating it well. She ordered a change to 12.5 mg THCZ, which I started on and am on to this day. The audiogram showed pretty significant loss in the left ear, particularly low frequency loss. Looking at the audiogram and taking in all of the other symptoms that I presented with (tinnitus, aural fullness, vertigo) her initial thought was probable Meneire's. That was early 2024.

During the Spring and Summer of 2024, I only had two other episodes - one somewhat mild and one severe. I scheduled another visit with my ENT and asked her at that time if there were any surgical options (having researched this option myself). At that point, she suggested a second opinion with a surgical MD in their group who specializes in conditions of the inner ear. Unfortunately, he was scheduled out 6 months, so I had to wait until just this week to see him.

Long story short, the MD confirmed the diagnosis and basically said stay on the diuretic, watch the salt intake, call us if you need anything. Not much help, but at least he agreed 100% with my NP. I did tell him that I had been taking Lipo Flavonoid for the tinnitus which has been really unbearable at times. He said that there are no scientific studies supporting the claim that Lipo Flavonoids do anything to mitigate tinnitus symptoms and any change in the symptoms is likely "a placebo effect". I told him that they really seemed to help me and he basically said "knock yourself out", in other words. So much for my visit with the MD that I waited 6 months to see. Underwhelming, to say the least.

So, here we are. I have Meneires and am trying to live a normal life. I'm somewhat afraid of travelling and really afraid of flying, for fear of another attack. The diuretic seems to be having some effect, even though my BP drops low at times. The Lipo Flavonoid helps to manage my tinnitus (in spite of the MD). All that said, I think I can manage it.

 Hi Everybody 

 I am Farrah 

 I have suffered with chronic none spinning dizziness day and night for over 20 years I have never had a proper diagnosis and now I am agraphobic and can't go out and have cptsd 

 recently the dizziness is happening in other ways too the way it moves

I am terrified of it all and don't know what to do to get the right help

 Hi Everyone 

I am Farrah 

I have been dizzy day and night for over 20 years ( none spinning) I've not been able to get a complete diagnosis and now I am agoraphobic and have cptsd