What is going on with me!?

I was diagnosed with ‘hydrops’ based off an ecog test about a year ago. My symptoms are; 24/7 tinnitus in both ears, constant of balance/rocking on a boat feeling, pressure/fullness feeling in ears. I often feel like this phantom feeling in my back and arms, brain fog sometimes. Sometimes get nauseous, have neck pain, at times feel on the verge of fainting but have never actually passed out. Lately have been getting weakness in arms. Could this be VM?

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Sounds a lot more like VM. Seen a neurologist?

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Welcome to the forum. I’m sorry your not feeling well. I have been diagnosed with VM/MAV and shared almost all of of your symptoms at one time or another. Many symptoms have improved for me with meds and time. I cannot diagnose your symptoms but IMHO iyoir symptoms are consistent with MAV. Perhaps seeing a neurologist will help you along. Things do improve. Feel better!

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The one dr. I have yet to see. I called to make an appointment and they told me to see a neurotologist, even though I’ve already been seen by one.

What type of dr. diagnosed you?

After many different Dr’s and tests, finally a neurologist who knows about VM/MAV. I still have a long way to go.

And they diagnosed ‘hydrops’ eh? Any neurologist should be able to diagnose VM/MAV. The one I saw managed to diagnosed mine (after 12 years misdiagnosed) as an aside in the course of a one off 40 minute appointment 95% of which was devoted to another condition altogether. You could try a migraine specialist neurologist . Then again many people are diagnosed by an ENT. Even PTs have been known to be suspicious and refer people on in some countries.

We aren’t medics so cannot diagnose/confirm and the medics will need a lot more detail too as much is decided by taking detailed medical history as there are no specific tests. Best to self educate a bit and see which vestibular condition seems the closest fit first. Plenty of information here and on the internet generally. Check the different conditions out and see how many boxes your symptoms lead you to tick. That’s much the way the medics work initially too.

Whichever it eventually decided you are more than welcome to join our friendly little gang where you will find a lot of support and understanding amongst people who know what you are going through by their own similar experiences.

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We can’t diagnose but I’ve certainly had all those symptoms (except for arm weakness) at one time or another. I was misdiagnosed with Menieres and then endolymphatic hydrops for many many years(by both private and NHS) and so twas given Serc (betahistine), low salt high fluid diet etc. I suspected I had Mav and I finally saw an ENT who diagnosed MAV but only gave me a migraine diet sheet and discharged me which didn’t cut it. My GP gave me some migraine meds but didn’t know how to titrate up or how long to keep me on them. I paid in the end (although had paid several times in the past with resulting diagnosis of Endolymphatic hydrops)to see a neurotologist who I knew was a MAV expert and got on meds which have slowly helped and who was honest, that for me, because I hadn’t had the right treatment for so many years recovery would be a long road.

As others have said, educate yourself and try to see a MAV believer/expert.

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Try to talk to your doctor again or have a second opinion if you found no progress!

hello dizzyaf, how are you?

Hi there. Thanks for checking in. I’m good. Just started on 5 mg of Lexapro for depression surrounding my unresolved, unrelenting ear/dizziness issues. Working well for the depression but not as much for the constant dizziness. But I’ve only been on it for two weeks. Just took 400 mg for a bad headache and helped with the dizziness tremendously. I’m trying to figure out if that means I have inadvertently found the cause of my 24/7 dizziness is MAV/VM or would ibuprofen help MM dizziness? I’m more inclined to believe ibuprofen would alleviate MAV/VM dizziness as opposed to MM dizziness. My headache comes on with storms and the dizziness intensifies. Saw an excellent neurologist today who believes I have an autoimmune disease. We shall see. I feel like I’m finally getting a little relief after a year of hell. This stuff is not for the faint of heart.

FYI I’m not sure if you noticed, but I www diagnosed with ‘Hydrops’ and ‘Secondary Hydrops’ as well as ‘MAV’ by different doctors. I’ve seen 5 consultants in total, it apparently depends on who you speak to! I didn’t even have an ecog test. Statistically MAV won by 3 doctors to 2 but I might be able to even it out by seeing one more doc or they might start telling me I have VM as that appears to be the current ‘fashion’ :sweat_smile: Remember these conditions are largely labels for a set of symptoms and not a reliable pathophysiology. Unfortunately medicine isn’t very well developed to often give definitive answers, especially in this area of the body. I personally have a hunch my problem is some kind of Eustachian Tube dysfunction leading to alternobaric disturbance of my inner ear which in turn leads to irritation of the brain with the potential for neurological fallout and the odd mgraine.

That said, the doctor who told me I had ‘secondary Hydrops’ told me it always gets better eventually and whilst I’m not 100% symptom free yet, it’s definitely waaaaay better and I live a med-free normal life. So I’ll take the prognosis! :sweat_smile: