Attacks or a constant feeling

Symptoms šŸŒ”
41

I think most people might be on this boat.Ill-compensated due to migraines. How long has it been for you on the MAV train ?

If you had vestibular neuritis or any vestibular trauma and got VNG soon enough you will see the defecit. You wait for more than 6 months the deficit becomes less pronounced as you partially compensate.

VEMP only measures the ear and takes the brain out of the equation and it clearly shows vestibular damage. I had mine done 3 times to see the pattern from the noise.

In my case there was amplitude asymmetry in my cervical VEMP. It could mean hydrops or some VN related damage. Clearly my brain is pending some compensation.

The good news is these kind of cases get better in the long term. I have spoken to one person who definitely had VN and was suffering for a long time. 2.5 years out now and he is 100%. He finally compensated and reached a baseline.

42

No EcoG. Want to save something for the doctors to do incase i keep showing up :slight_smile:

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43

I donā€™t know but hereā€™s Dr. Hainā€™s page about it:
http://dizziness-and-balance.com/disorders/menieres/hydrops.html

I think @turnitaround is more educated on hydrops. He may be able to answer your question.

44

Iā€™ve been on this fun roller coaster for 4 years now. For the first 12 months I lived in Canada and was maybe functioning at 10-20% daily

I then moved to Boston to get better medical care (middle of nowhere Canada is not rife with Neurotologists specializing in constant dizziness). I got the Unilaterial Hypofunction diagnosis here. Vestibular rehab got me to maybe 30-40% functioning daily

I started Gabapentin 3 years in and itā€™s now got me to 60-80% capacity (sometimes 50% on a bad day) - I still get 1 migraine every week but they are much more mild now. Also have a script for Nori but have been hesitant to start it. You are absolutely right, although itā€™s sometimes hard to see, compensation is gradual and happens over time. Unfortunately my brain is a special kind of broke (6 concussions) so itā€™s taken me longer than normal

45

Goodness, apologies if youā€™ve mentioned this before but how did you get those, sports?

46

Not trying to scare you but I saw this article the other day and you might find it interesting.
http://www.heraldtribune.com/news/20171225/roskamp-one-head-blow-may-do-lifelong-damage

47

I;ve been sort of tracking my symptoms since they calmed down. But basically, I start to hear a very mild tinnitus and then my ear feels full. But not so full like Meniereā€™s where you canā€™t hear. Just like a slight pressure feeling. I start to get really tense in the neck and feel a little throbbing sensation in the ear.

I check my hearing using an advanced hearing test online and there is never any hearing loss and none that I can notice, either.

Is this consistent with vestibular migraine? I have had the Ecog and it was normal. I was assured this is not Menieres.

48

It could be Secondary Hydrops (SEH) or MAV I reckon but get that confirmed by someone qualified.

There are several on the board who have SEH diagnoses including me. I get fluctuating tinnitus. It got worse for about a year and then started to improve. Some people only get it episodically. Just like MAV there are dietary triggers (the very same ones, draw your own conclusions from that) that can worsen the tinnitus temporarily.

SEH develops months or years after a physical ear trauma eg pressure injury on a plane. I got mine 5 months after foolishly pointing a shower into my ear.

The underlying etiology of SEH is similar to Menieres, in that it concerns an imbalance of the primary fluids in the inner ear, but itā€™s not as severe and apparently burns out after a few years.

49

Thanks. I never had any trauma to my ear that I know of. Only migraines. I guess everything I have points only to vestibular migraine! I do feel it dying down slowly.

I guess with menieres it would be very apparent, right?

50

Itā€™s probably academic because in my opinion they are the same thing. It used to give me migraines. They donā€™t happen anymore.

51

What do you mean?

52

The list of symptoms is identical and they have the same triggers.

I was diagnosed with MAV then ā€˜MAV or SEHā€™ then ā€˜SEHā€™. Draw your own conclusions.

53

Makes sense except I have no cause for the seh except stress.

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54

Was your ecog normal?

55

Iā€™ve never taken an EcoG

56

Oh because my ent said that seh is usually detected with that test. Mine was normal. This is why this stuff is so confusing ā€¦I read someone where else that menieres is slow to evolve ā€¦ in 8 months of this do you think if I had menieres it would have been obvious? For example, there would have been some hearing loss and intense vertigo episodes?

57

Menieres is also very rare. Donā€™t worry.

58

They say that SEH just affects the cochlear part of the war not balance which is why hearing is affected and tinnitus. But I have no hearing loss whatsoever.

They also say MAV people also have normal tests as well whereas true vestibular disorders have some abnormalitiesā€¦

Thoughts ?

59

That doesnā€™t sound correct at all. SEH definitely includes dizziness and imbalance:

http://vestibular.org/secondary-endolymphatic-hydrops-seh

60

Hi Brent,

James had already asked how you landed up with 6 concussions.

Do not shy away from the Nori, i personally think Nori can help better than Gabapentin. Gabapentin has a very little half life and should be taken at regular intervals like (2x, 3x per day)

If you find 80% lets you do VRT keep at it, for ill-compensated folks VRT is a must-do.