Sudden and Unexplained

[Michael910411]

Hi again all. I wanted to check back and share my updates in case anyone else can benefit from the info or has a similar story to share.

Background is 100% unexplained left-side hearing loss 2+ years ago resulting in loud T in that ear and mild T in the other ear and dizziness. (Much of this post relates to vestibular issues so it may not apply to all on this board.)

The problem I have visited ENTs and Neurologists for is the dizziness/cloudiness and migraines. For the migraines they gave me gabapentinn which is an anti-seizure medication that calms activity in the brain, apparently enough to suppress migraines. I was told that 900mg was recommended, but I have successfully stopped the migraines with 300mg/day, some days with an extra pill.

My main concern is the dizziness/cloudiness and constant fatigue. Too much motion results in dizziness, disorientation, and tiredness. My research indicated that there were two primary potential solutions, both destructive in nature. The first is an injection through the eardrum of a strong antibiotic that essentially kills all remaining vestibular function, the theory being that if you kill the broken mechanism on the left that is sending bad balance signals to the brain, the right side will compensate and all will be well. The second option is a surgery involving drilling a hole in the skull to access the cavity where the vestibular mechanism resides, and surgically removing it. The theory here is the same, stop the defective signals and all will be well.

After a doctor in NY told me "Don't let this ruin your life, let me do the surgery" I consulted doctors at Johns Hopkins and another at the University of Maryland and they both said the same thing... that a destructive procedure could actually make things worse and not better. They disagreed with the theory that bad information is being passed from the left side (and the theory that killing it would make things better) and instead believe that, because the nerve on the left side was damaged/destroyed, no signal is getting through to the brain and what I am experiencing is simply my brain trying to heal and deal with the trauma.

I am going to see if the Vestibular Disorder Association has a board and try posting there as well, but wondering if anyone was/is in the same boat and what your experience may be. My life has been significantly impacted by this for 2 years and I am just about ready to try something extreme if there is a chance that it could get me back closer to normal.

Thanks everyone,
Michael

 

[Aaron123]

When I saw your post, I thought of https://dizzy-doc.com/

I have no personal experience with them except that the information on their related site http://www.dizziness-and-balance.com/ seems to be very good.

It sounds like you have already gotten several opinions so perhaps another one might not be helpful, but I thought I would mention them anyway.

 

[Lorac]

Hi Michael,
My background is 100% unexplained left hearing loss in 2013 also. I had extreme vertigo at onset which lasted for about a week and then that foggy, dizzy feeling you describe for another month or so. The dizziness is only a minor and occasional problem for me now. What helped me with the vertigo was something called the Epley Maneuver, but I am guessing that you have already tried this? I have not experienced migraines as a result of my hearing loss but I did go through a year with severe migraine headaches at an earlier stage in my life - the worst pain I've ever experienced, so I feel for you.
Aside from the obvious challenges that go along with being unilaterally deaf, my greatest issue is still with the noise and ear fullness.

 

[Michael910411]

Aaron - Thank you for the link to the dizziness websites! I see that one is in Chicago which is a nice short plane ride from there, but would be well worth it, checking out the websites now, thanks again. -Mike

 

[Michael910411]

Hi Lorac,

Thank you for the information about the Epley Maneuver. Believe it or not I have never come across it in my research and no doctor has ever mentioned it to me. I've already watched a youtube video about it and will continue to research. When this all originally happened I did go to some vestibular physical therapy but it was nowhere near as intense as this.

Your post was pretty amazing, as it sounds like we had the exact experience just months apart from each other, and are now both living with the same problems.

The T and dizziness have been getting worse of the past few weeks. My doctor at Johns Hopkins keeps telling me that I need to go on a very restrictive diet for at *least* two full months to judge its effectiveness. I've resisted for a variety of reasons but I think I am going to give it a try to get this under control.

Thanks again for the Epley Maneuver information, I will let you know if I have any interesting follow through information to share.

Mike