Hi! I'm new here... this is my story

Hi all - I’m new to the group. I’ve been dealing with dizziness and vertigo for a year (8/4/2015 is when it started after standing up - I was deflating my kayak after a short float trip on a lake). Not a day goes by that I don’t feel dizzy to some degree. I have subjective vertigo when it really flares up (I spin, not the world around me). I have the best hearing according to the ENT and neuro-otologist - which is part of my problem, sounds make me dizzy, especially high pitch or loud noises. Along with dizziness/vertigo, I have headaches daily, facial spasms and tingling around my right eye and lips (started in Nov 2015 after a severe pinpoint headache top right of my head), tinnitus (most of the time I only hear it if I’m in a quiet room), blurry vision (I assume caused by nystagmus when I get really dizzy), clogged ears, brain fog and fatigue.

I started physical therapy in September and initially it made me dizzier, but after 6 months, even though I was dizzy every day, I was walking normally. At the end of November (on Thanksgiving-Thursday), for whatever reason following a really rough couple of days, I woke up one morning and the dizziness was minimal. I went to physical therapy that following Monday and said “I’m cured!” chuckle. Not quite, but where I could only stand on foam mat for 7 or 8 seconds with my eyes closed, I could now stand on the foam mat for 20+ seconds with my eyes closed. A few days later I went for my first VNG… UGH! It came back abnormal - they thought it was SSCD. Caloric test for right ear was slightly less than left ear but I assume within normal range. The audiologist noted that even though the test showed that it was a similar response, I had a much stronger reaction for the left ear.

Also in Dec I had my first appointment with a neurologist. He prescribed me Topamax for the headaches and facial spasms and numbness/tingling.

They sent me for a CT scan and referred me to a neuro-otologist that is 100 miles away. He couldn’t see me until January. He said none of my other symptoms fit and from reading the CT report, they did the CT scan at the incorrect angle. He had problems viewing the CD, but said even if he did see SSCD, he would not perform the surgery because he did not think that was causing my dizziness and sent me home. The first ENT who referred me to that neuro-otologist said no follow up for 6 months and in June said nothing more could be done, deal with it, go back to physical therapy seeing as that helped. My dizziness was really starting to flare up after hearing a really loud noise on May 1st and after being on an airplane.

In the meantime, I came off of the Topamax because the word find issue was just absolutely horrendous - I was calling things by the completely wrong name thinking I was going to say the right name until it popped out of my mouth. It did help with the headaches though, but I felt like my ability to communicate was more important. So, the neurologist put me on propanalol, which caused my blood pressure to drop to 100/62 and my headaches increased to all day, every day and it did nothing for my facial spasms and the numbness and tingling. So, I went back to the Topamax and started off very slowly on the doses and stayed on the dose for 3 weeks before increasing. The neurologist treats me for headaches and facial spasms only, and says vestibular issues are not central nervous system issues. He did refer me to a 2nd ENT though…

The 2nd ENT did another VNG (barf), ABR, ECOG, and fistula. During the hearing test, for my left ear, I could tell that they were doing the tones, because it was making me dizzier, but about 1/4 of the way through the test, all I could hear is my heartbeat in my ear. But my dizziness would go up, down, up, down, up, down, until the end of the test. This time, VNG caloric for the right ear came back really abnormal (38% difference) and ABR for the right ear is abnormal (delayed response). MRI has come back normal. So, the 2nd ENT has now referred me to the neuro-otologist that is in his office (thankfully only 20 miles away and not 100!!). He thinks it could be one of a couple of things: He did a test in his office of blowing air into my ear checking for a fistula. He asked, does that make you dizzy? Nope, doesn’t make me dizzy. So, we sit there and talk for a little bit and here come the spins. So, I ask him, is that test supposed to make you dizzy later? He said, Well, that’s different, but not totally unheard of… So he checks me for nystagmus and he doesn’t see any, but I’ve had physical therapy for 6 months and that is a major thing that they worked on, so I don’t know if that could be the reason why he didn’t see the nystagmus ?? So I keep spinning, and he finishes the paperwork to refer me to the neuro-otologist and leaves the room and tells me to take my time leaving. A few minutes later, the pressure in my left ear builds (he did the test in my right ear - yeah, I’m backwards). And he comes back and checks on me. And I say I’m ok, just need to sit for a while. So he turns the chair so I’m facing the door so I don’t have to walk around it and leaves. And then my stomach starts doing a dance burp, burp, burp (I thankfully have never vomited, came close after my first VNG even thought I hadn’t eaten 4 hours prior)…

or the ENT thinks if it’s not a fistula it could have been a small blood clot formed and blocked the blood flow to my nerve causing nerve damage… or a virus attacked my nerve causing nerve damage (neither explain the sensitivity to sound and neither can be proven except by autopsy and I “should not still be dizzy after 6 months of physical therapy” - I still experience dizziness everyday, just not as severe).

So often I hear that there is hearing loss, but since this all started, my hearing is amplified. I bought a new dishwasher that is 40 decibels at it’s loudest (quieter than people talking) and it still makes me dizzy even when I am upstairs, with the door shut on the opposite end of the house. I can tell you the exact moment somebody hits start on the stupid thing. I can hear the ice cream man as soon as he enters my neighborhood, because my face feels like it’s been asleep for half an hour and is starting to wake up and I have pin prickles all around my eye and mouth, and at first I’ll just here one specific tone (beep, beep beep, beep, beep) and then slowly a second tone will fill in the missing spaces, and then the 3rd tone. The first time it happened, it took a few minutes for me to realize what was making the sound that was making me dizzy. I was just asking my husband to find it and make it stop! (I thought it was an alarm on a cell phone or something…) ENT’s and neuro-otologist always say, “You have the best hearing of any one we will see today!”… and it kills me.

Ooh ohhh ohhhh!!! I am in the strange phenomenon of sounds make me dizzy too!! I dont sccd…they have no idea what does it but i think its quite possibly migraine related(been diagnosed mav in march) My dr looks at me blabkly when i say sounda make me dizzy and when im veey symptomatic just feeling my footsteps in my head or eating crunchy foods make me dizzy too!! Xx

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Have you read about Superior Semicircular Canal Dehiscence? Do you hear your heartbeat all the time or do you hear your eyes move? Do things vibrate with sound (I’ve only had that happen once at a band concert (high school band, not rock band :wink: - my youngest daughter plays clarinet). Eating doesn’t typically make me feel that way except when something else has triggered me and I just feel bad and so everything seems to aggravate my dizziness - if that makes sense. It’s a rare condition and there’s not a whole lot of information out there about it, but there is a little and it’s an interesting read. Because I don’t hear my heart beat all the time, and because the tuning fork sounds louder by my ear than it does when they place it on my teeth, and my triggers were all over the place, the first neuro-otologist ruled it out. Back when this first all started, I was so dizzy all the time, they could have asked me if the color purple made me dizzy, and I probably would have said yes… haha Seriously though - I would say going shopping made me dizzy, thinking it was going up and down the aisles, but maybe it was some sound in the store that was making me dizzy but at the time I didn’t realize it until I got some relief from being dizzy and then realized that when I’m in a store with forklifts that beep - the beeping makes me dizzy!