Continous dizzy/woozy/lightheaded feeling from endolymphatic hydrops?

Hi Dizzyear,

Yes, i have had episodes of room spinning vertigo. My last bad one was last August 2015, before that July 2015 and December 2014. They lasted maybe 10-30 minutes??  I don't recall any loud tinnitus or ear fullness or hearing loss with them either. 

My hearing tests have come out perfect, I requested another eCog because I wasn't convicted it was hydrops and it was done only three months later and it turned out normal. Plus, I got copies of my tracings and the diffenct between the two is like night and day. I do not know how the first one could've been read, it should've been counted as inconclusive.

i have done VRT and am doing it again with a PT center for dizziness. I am no longer on the diuretic As it never took away the constant woozy feeling with motion which was and is still my main complaint. It is constant everyday, except when I initially wake up, I feel almost normal, until I get to moving and turning my head/body a lot like With turning in the kitchen, or doing sustained activities around the household or at work. When I can lay down and rest or sometimes even sit, the feeling goes down.

We are now looking at the possibility of MAV/VM. Although, I think I have a touch down PPPD. I've recently learned that migraines run in the family and I believe I've had them and still do, now that I've read up more about them. 

Thank my ou for replying. Were you diagnosed with hydrops? Are your symptoms typical?? Are you taking medications? 

My neuro-otologist says I don't present with classical symptoms for anything!!  

Oh and yes, I've had an MRI, last September at it was normal, head and inner ear. Thanks

Hi Lisa,

It is good that your vertigo attacks are not too common.  Glad to hear that they don't last too long as well. Some people have these for many hours from what I have read.  

I understand not feeling convinced.  There doesn't seem to be any clear test to diagnose Hydrops or MAV.  But, since the vertigo lasts more than a minute or two and doesn't seem related to head position changes, you can pretty much rule out BPPV.

It took quite a while for me to get a diagnosis, about 6 years, because, like you, my symptoms were not really a match for any dizziness condition.  I was diagnosed with Superior Canal Dehiscence (SDCS) about 4 years ago (Symptoms vary a lot and also one of the rare conditions).  My main symtom was a unsteadiness type of dizziness, a general sense of disequlibrium.  Kind of like having a couple of alcohol drinks without the intoxication.  For me, my dizziness is fairly constant through the day.  I also had many normal tests: MRI normal, hearing normal, etc.  After about 6 years, I developed a few other symptoms Autophany, ear fullness and this helped me get a few more tests with a good ENT that eventually led to my diagnosis.  I haven't had any vertigo yet, but it is a possibility from the list of possible symtpoms.

There really are no medications that do much for my condition, it is caused by a hole in the bone covering one of the inner ear balance canals.  There is a surgical fix for this but it is big surgery and normally reserved for more extreme cases.  

I am not really sure what to make of PPPD.  As I have been researching, seems to be a lot of disagreement on this.  The description of PPPD seems to cover a lot of the other dizziness conditions.  I suppose, if there is a PPPD treatment and it helps, then it is worth it and if not, ithen it wasn't.  

I am impressed you found a neuro otologist.  This is exactly the type of Dr that should be able to help you.  I read about a lot of people going to a general Dr and not making much progress. 

Do you think the VRT has helped?

Hi Dizzyear,

Thank you for responding. I think VRT helped me the first time, then plagued. This second time, not really so far. 

Wow, six years! That's way to long to feel bad, I'm hoping it's not the case for me. I've read about SDCS and I've not had a CT scan which j thought was the way it's detected. I'm not sure if a MRI would pick it up. I had a test for perilymph fistula and it was also normal. I don't have auto phony and I don't hear my eyes move in my head. I don't have spinning room vertigo. 

My dizziness waxes and wanes but it's lays there except I don't always notice it in my sleep. It's brought in by self movement and is worse when I don't sleep well/fatigued. Sometimes my eyes don't seem to match up with my brain, if that makes any sense. 

I did have what I thought was bilateral eustacian tube dysfunction a little over a year ago. My ears were plugged, could not pop them open, it sounded like I was talking under water. It lasted about 2 months. I think maybe it might've been allergies as it happened in the spring time. But, I've always been one to not suffer from bad allergies so, who knows. I stated Flonase and decongestant and I think maybe that had helped it and it finally went away during a family vacation! Maybe it was stress and being on vacation cured it, lol! 

My ears have bothered me off and on all my life, had frequent ear infections as a child. Doctor wanted to put tubes in my ears as a kid but I never got them. However, no doctor has ever commended in the appearance of my ear drums so I'm assuming they don't look scarred over or anything. 

Youre lucky you have t experienced true spinning vertigo. It is the most unpleasant feeling of total loss of control of your surroundings, just awful. 

How were you diagnosed with SDCS? I've read there is a really good doctor in Florida that does surgery for it. I think also another one in Oregon. 

I was diagnosed with Superior Canal Dehiscence.  I had the high resolution CT scan where they could see the hole around the Superior Canal.  Also, had a follow up Vemp test that shows abnormal result.