So I met up with a new doctor

The doctor specializes in dizziness and balance. Did thorough testing of what a gp would do plus more. Did a balance test and the last test kind of freaked me out. The doc had me raise my arm parallel to the floor, close my eyes and march in place for 30 steps. After I was done, I open my eyes and I was facing to the right about 45 degrees or more. The doc has a theory that it’s endolymphatic hydrops and that is my curren diagnose for now until further testing. On 12/16 they are going to run vng testing and ecog. They have told me do not take ami prior to the test date. I’m currently on 15mg and I was thinking about bumping it up to 20 mg this weekend. Do you think it will be safe to just not take ami for 1 day before test date? Ami has been a saviour for me as far as sleeping goes. Next week will be my 3rd week on ami.

Ami can skew the results as it is a vestibular supressant. They usually have you stop 3 days before the VNG.

I actually like your doc who threw in hydrops before calling it off as vestibular migraine. Is your condition erratic ? one thing i have found with hydrops is you have good days and bad days intermixed it is very difficult in the long haul to say whether you are improving.

I am on Ami 20mg and it is a savior but functioning at 80%. My doc suspecting a hydrops has me started on a diuretic, waits to be seen if it helps. Good luck with your VNG and ECoG and keep us posted.

It’s hard to say if my condition is erratic. I started work after my 3 vacation last week. During the 3 week vacation, all I did was lay on the bed 24/7 and use my phone and trying to sleep. I believe just laying around maybe because of head pressure made it worse. My anxiety and stress was off the roof and had imsomnia for the last half of the 3 week vacation. I believe the last week of the vacation, i got my hands on ami and started to sleep for about 4 hours and I would wake up. Ever since I started to work again last week, i have been sleeping 7-8 hours and I believe I had improved. Probably because i’m working and not laying down all th time. But then yesterday night, everytime i would lay down i would get dizzy(spinning sensation). Then I would get dizzy when I get up from laying down and cause imbalance. The only thing maybe that have caused it is maybe I ate an apple after I took ami. Maybe perhaps I ate more fish than usual yesterday. That’s the only difference than any other day that I was on ami. The new doc said that i should be taking ami on a empty stomach because taking the ami with the meal with delay the effects which is true I think because whenever I take ami, it would take 3-4 hours to kick in.
Also, the doc told me to keep up with my diet. I told him i’m doing the 6cs diet and he said thats good. He said absolutely low salt. I think i found a good doctor. Forgot to mention, he had a copy of my hearing test. He noticed some drop on the low frequency even though he said my hearing is good. He said the drop in low frequency is a usual suspect of hydrops. I hope he’s onto something here.

Call them and find out exactly when you should stop the ami. You don’t want to jeopardize the results of the VNG and ECOG tests.

And it does sound like you’ve found a good one! May I ask what city you are in?

I am in anchorage alaska. Not many good doctors around here. The doc said 12 hours before testing.

Wow, only 12 hours? Personally I think I’d try to stop a couple of days before.

And I’m about as far away from you as I could be, but still be in the U.S. I’m in Florida!

That is almost complete opposite side of the U.S lol.


Do you think hydrops eventually clears up / improves?
It sounds as if James was saying it does improve over time? Or could that be just fistula he meant?

It’s supposed to improve. If it’s not menieres (very rare, obvious low frequency hearing loss initially in episodes) then you have hydrops for a reason like trauma or injury (eg fistula). Once the injury has healed it’s supposed to steadily improve.

My heartfelt belief is that MAV IS a form of Hydrops. It’s too obvious: it’s clear that most MAVers have persistent tinnitus and issues with sleeping position and head pressure which all point to an etiology which involves an ear. In other words let’s not get too hung up on “Is it MAV or Hydrops” because they are probably the same thing. I also believe vertigo is what happens when the ear releases a lot of pressure and that is most likely down to a degree of Hydrops. The degree of Hydrops governs the extent of symptoms, e.g. its possible to have a Hydropic ear and no tinnitus.

I shared a paper recently that shows MRI evidence of Hydrops in ears of VM/MAV sufferers with hearing symptoms.

Looking at it another way - I for sure had an injury which has lead to leakage of fluid into my middle ear especially when reclining (head pressure) - ie a fistula - and yet I have had every symptom described by people on this board. I conclude that there is a common etiology in all cases and can only assume there is something up with all of our inner ears and that’s most likely to be a degree of fluid imbalance. I go more deeply into this controversy here:

Totally! This is called sleep hygiene and in fact MAVers (!) are told to limit their sleep to the normal 8 hours a day. (again more evidence that MAV = degree of Hydrops imho)\

In any case its very important to get sleep but to also consider head pressure and limit sleep to 8 hours. When in bed use additional pillows to keep the head up to limit pressure. This has eliminated vertigo for me (but it took a few weeks)

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Always appreciated it james. Thank you!

Gosh no problem. Pleasure.

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James (@turnitaround), your theory about MAV/VM vs. hydrops vs. fistula reminded me of something that happened several years before my first dizzy spell.

In 1990, I took a vacation trip to Canada and, while there, got what I thought was a very bad cold. The morning that I was scheduled to fly home, I awoke to find that both of my eyes were blood red (not just a little pink, I’m talking solid red). I flew home and, upon landing, found that one of my ears hadn’t “popped” from the pressure change, and I felt like I couldn’t hear out of it because it was completely plugged up.

By that evening both of my eyes were oozing pus, I called my doctor, and he said to go to the emergency room. When I saw the doctor there, he said that the red eyes were due to the virus moving into them and that you can get a viral infection of the eyes. He prescribed some sort of drops, as I recall, and told me to follow up with my eye doctor. As almost an aside, I said, “Oh, and also one of my ears didn’t pop when the plane landed and I can’t really hear out of it.” He immediately looked into the ear with his otoscope and said that he could see blood, most likely from a blood vessel on the eardrum that had burst. He seemed much more concerned about the ear than about my eyes.

As it turned out, the ear returned to normal within a day or two and that was the end of it.

I had my first dizzy spell five years later. Probably no connection, but reading all of your posts makes me now wonder whether maybe a structure in my ear had been weakened in 1990, and then further weakened in 1995 enough to cause the dizzies. Hmmm…

Did you veer towards your bad ear or away from it. Also definitely get a audiogram every 3 months once to monitor for progressive hearing loss. SEH can happen with and without hearing loss.

As the condition name goes it is “Secondary” hydrops so there is a primary underlying cause. If the primary goes away then SEH heals faster. Good luck figuring out what the primary cause is, only one i know is a fistula. Every doc i have seen so far has said fistula is extremely rare and the pressure tests i did proved negative.

All doctors Dr.Raunch, Dr.Hain and even Dr.S think the migraine starts in the vestibular center of the brain. There is no real test to distinguish hydrops and VM but the etiology is miles different. All these guys are aware of the fact that SEH exists ( 2 years of fellowship on top of MD they better be.) . I think the two conditions have the same symptoms but i would not rule out that a percentage of folks here can be pure migraineurs who have an irritated brain balance center. There certainly could be SEH folks misdiagnoised as VM. But true VM folks can exist as well. My 2 cents.

My right ear was the problem and I ended veering to the right side. The doc did say my hearing was good and I don’t see any symptoms of hearing deteriorating but I will keep that in mind about the audiogram. I forget what he said about fistula but he ruled that out.

My thoughts entirely otherwise topiramate and gabapentin, both anticonvulsants, would work for all, not just those of us correctly diagnosed with VM.

Without any science to prove it, I’m of the opinion its fantasy. Vertigo is dysfunction of the inner ear. Full. Stop. No doubt dysfunction of the inner ear causes neurological issues and migraine.

Ear injury can show up with delay. Up to 10 years according to my doc. I had solid wax obscuring my ear drum when I injured mine. I wonder if it would have shown blood on the translucent drum too …

That is really interesting. I’m trying to think 10 years back if I had any injuries and I can’t think of any.