I am so sorry for the length of this post, but I am trying to get my explanation out there so I can get some help please!!!
Here is a list of my symptoms
general feeling of not feeling well, always feel like im getting sick
Loss of balance
Trouble Focusing, objects around me jump, float, bounce, blur
Loud noise makes me feel like im going to pass out
Busy environments make me dizzy and feel like im going to pass out
Sensitivity to light, glare and moving or flickering lights, especially fluorescent lights
hard to walk in the dark
poor depth perception
frequent loss for words
anxiety and panic
feel hung over every morning
sensitive to loud or sharp noises
brain flashes?? really hard to explain (like someone is turning off and on a light)
sensitivity to vibration
feeling a vibration in my eyes and forehead sometimes when I talk, like someone held a buzzer to my face briefly
Irregular heart rhythms
sensitivity to a change of hot and cold temps and changes in the wind
shadows moving make me fel like im going to fall down
objects around me look like they are moving or I feel like im moving when not
I finally got a diagnosis today and I am so confused. My ENT said that because I DO NOT have true vertigo, that he is diagnosing me with Peripheral vestibulophy with visual ocular reflex. (IF someone could give me a better understanding of this DX I would greatly appreciate it)!! BTW I have 31% nerve damage in my R ear and my eyes dont move correctly with the ENG test therefore below is my DX based on the ENG test and my symptoms.
This is the medical website definition for what I have been diagnosed with, and I dont understand what it is saying. Particularly the last sentences are confusing to me. I DO NOT have true vertigo, I have light headedness, so is this saying that people with recurring Peripheral vestibulopathy only get the lightheadedness and not true vertigo? (I have chronic lightheadedness) Please help me understand what this is saying. I was so happy to have finally gotten a DX and then when I came home and read this definition, I became very discouraged that maybe I was misdiagnosed because I DO NOT have true vertigo and when I read up on my DX it says that TRUE VERTIGO is the main symptom of this DX. But is that for the acute PV and with the recurring PV it is different? ( sorry to be repetitive but im trying to alleviate any confusion)
Peripheral vestibulopathy, encompasses terms such as vestibular neuronitis, labyrinthitis and viral neurolabyrinthitis. Such terms imply an inflammatory mechanism, which is unproved. Vestibular neuronitis, strictly speaking, is characterized by single or recurrent sudden episodes of true vertigo lasting from hours to days and often associated initially with vomiting. When the condition is associated with hearing loss, the entire labyrinth is assumed to be involved, and the term labyrinthitis is used. Despite this technical distinction, many neuro-otologists, otologists, and neurologists use the terms vestibular neuronitis and labyrinthitis interchangeably, whether or not auditory symptoms are present. In such patients the vertiginous sensation may be provoked by head movement, but not necessarily by a particular head position. Whether isolated viral involvement of the vestibular nerves is a cause of acute or episodic vertigo is controversial. Many prefer the term acute or recurrent peripheral vestibulopathy. In the acute phase, many patients present with sudden severe vertigo, nausea, and vomiting without any hearing disturbance or facial weakness. The acute symptoms usually resolve in a few days to a week, but may recur in weeks or months. If true vertigo is part of the symptom complex, the condition is most likely to be associated with some disorder of the peripheral end organ. However, patients with either acute peripheral vestibulopathy or, more commonly, recurrent attacks may experience only a sensation of lightheadedness or floating, or a feeling of "walking on tennis balls." Even if the patient has had hundreds of episodes, it is important to determine whether any of them were associated with spinning vertigo. Over time, the nature of the patient's symptom complex may change, even with peripheral vestibulopathy, from vertiginous sensations to those of pure unsteadiness or disequilibration.
I just now found your post about compensated vestibularopathy. Has a doctor ever spoken to you about, or tested for, superior semicircular canal dehiscence? You have the classic symptoms for it, particularly the constant dizziness, brain fog, extreme fatigue, sound sensitivity, hearing your footsteps, eye movements, distorted voice, etc in your head. I know because I was living with the same symptoms for the past two years. The good news is, it can be correct by surgery, which I had 4 weeks ago.
Wikipedia has a good page on it. Also check out the following:
On YouTube: The Musician who heard too much: http://www.youtube.com/watch?v=YkGsiyJyuRI
SSCD is rare, and most ENTs have never heard of it. I was lucky that I found the scdssupport.org forum, through which I found the doctor who diagnosed me.
Thank you for your thoughtful response to wabs09 on June 27,2010!
I have dealt w/many of his symptoms since 2003- many doctors .many diagnoses, including Mayo Clinic , buit no clueson how to relieve these symptoms which
have radically changed my life and not for the better! Could you possibly tell me the
physician that diagnosed SSCD and started you in a new direction? I would greatly appreciate any thoughts or directions you might offer. Sincerely,Bob Shaw
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