Cochlear hydrops - diziness getting worse

Ears, nose and throat
1

Hi everyone - just looking for some advice - hopefully someone is experiencing similar problems to me and knows how to relieve them a bit.

For a year now I have been dizzy (everything moving slightly and me slightly moving) it started with terrible brain fog which has since gone and only comes back when I get a bad flare up. I also get terrible fatigue and exhaustion which also gets very bad when I have a flare up. A whole lot of annoying symptoms, but the main one being DIZINESS !!

I have been to an ENT and have been diagnosed with cochlear hydrops in both ears. Had an MRI, results showed nothing. Had more tests done to determine how much liquid was in my inner ear (forget what the tests were called but the ones where you follow the dots and they blow water and air into your ears while you wear the huge goggles). The ENT then diagnosed me and put me on SERC 16mg to help with diziness and dithiazide (diuretic) to get the liquid out of my inner ear.

Recently I have found that my diziness is changing and it is now very difficult for me to walk. It feels like I'm falling to the sides and can't keep in a straight line what so ever. I'm having to hold onto my partner wherever we go. As you can imagine this has brought back a lot of anxiety I was experiencing when I first got this condition. I have been put on antidepressants to help with my anxiety as it's getting to the point I can't leave the house by myself.

Does anyone have any tips or possibly know any other medication I could be taking to help with my balance issues ? I'm seeing another ENT later this week but am willing to try any suggestions anyone has.

2

I am very young - about to have my 21st birthday and this condition has impacted my life in every way. I no longer have a social life, I can not attend university and haven't worked in about 2 months. Willing to take on any suggestions anyone has as I'm getting pretty dam sick of living like this and have no clue what to do to relieve my symptoms.

3

My only advice would be that you are wasting your time with an ENT.  A Neuro-otologist specializes in inner ear issues and is who I would seek out.  ENTs deal mainly with middle and outer ear issues.  If you are having balance issues it is coming from the inner ear or brain.

4

Is the dizziness continuous, all the time?

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

5

Thanks for the advice - just yesterday I was looking into a neuro ontologist or neurologist and found one just around the corner from where I live. Will definately make an appointment. Thanks

6

It is continuous all the time. It gets a lot worse when I am sick or tired and also recently has been a lot worse after driving.

7

Because the symptoms are continuous rather than episodic, I am going to have to disagree with the diagnosis of Cochlear Hydrops at the moment.  Have you had a hearing test (audiogram) done?

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

8

I am going to get a second opinion tomorrow from another ENT. I had a hearing test done and everything came back fine except slight damage in one of my ears due to loud concerts. Nothing major though