Originally Posted by dizzym2010
I also relate to most of the symptoms described on other posts and the ones you describe! I do think the swaying sensation is real, in the sense that I think I do sway/move while standing/sitting, only I feel it a hundred times more than other people probably would. Oh and talking to people while standing or even sitting down can be such a challenge - too much eye/movement/focus coordination always triggers my symptoms. But I have been diagnosed with Bilateral Vestibular Loss (basically, both my inner ears have been damaged, reasons unknown) which typically causes a lot of visual/movement related symptoms. So you never got any dx? Do you still live in Italy? I would say you should definitely do more tests with a specialist, make sure they run all the balance tests (including ENG and caloric tests) and hopefully they can find at least more about your condition, so that you know how to try to approach it. I have been suffering from BVL for about 11 years, with "normal" years in between, but for the past 2 years my life has been extremely limited. Wish you all the best!
Hey there! I am really interested in knowing what kind of tests they realized to give you a dx of Bilateral Vestibular Loss. Does it involve hearing loss? because surprisingly I do not have any... I have gotten a bunch of diagnosis, 1. one doctor said that I have a deviated septum and that the airflow through my nose does not enter equally through both nostrils so the pressure on the eustachian tubes is different thus causing this "imbalance feeling", but I looked into it and it just didnīt really make sense and other docs told me my nose wasnīt looking deviated, so I didnīt really research into it. 2. Another doctor told me I had a bad laberinthytis case left untreated which eventually led to damage in the vestibular system. 3. Another doctor said it could be caused by my TMJ, muscles pulling on my ear and causing unbalance. 5. Cervicogenic migrane (which im staring to look into) 6. Bad blood flow to the head do to deep tissue muscle knots in neck 7. the classical "its in your head" stress anxiety symptoms.
I dont buy that its stress, I used to be the most active crazy person, bungee jumping, constant traveling, swimming, boating, diving, you name it I was onto it looking for adrenaline rushes. Now I canīt go on boats, planes, anything that moves because afterwards, my imbalance gets worst. I was up skiing this weekend on the mountains...and my balance was way off. Itīs just so life consuming, I donīt know why docs havenīt bothered on doing more research on this when so many people suffer from it...
Tests done: caloric, hearing, tac, and some eye thing that i had to look at a dot that was moving back and forth checking for nystagmus.
I wish this could just get cured, i wish i was my old self. Iīm 25, i feel like i couldīve done anyting with my life and this just stopped all my plans, dead cold. I cry so much, nobody can relate, people think I just got lazy. It breaks my heart for my father to tell me that heīs so disspointed in me for being lazy because he says i couldīve gotten so far. They knew about my dizziness, swaying, but after so many docs, they just belive im lazy.
After so many years, I have to fight depression and anxiety, CAUSED by this.
I hope you can give me some light on this, on what youīve been told, etc.
Best of luck and comprehension from me to all.