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DR. Please help!! Peripheral Vestibulopathy ??Confusing DX and in desperate need of help
I am so sorry for the olength 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
difficulty concentrating
frequent loss for words
forgetfulness
fatigue
anxiety and panic
lightheadedness
depression
moodiness
feel hung over every morning
tinnitus
sensitive to loud or sharp noises
ear pain
slurring words
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
Brain fog
muscle weakness
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
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.
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
difficulty concentrating
frequent loss for words
forgetfulness
fatigue
anxiety and panic
lightheadedness
depression
moodiness
feel hung over every morning
tinnitus
sensitive to loud or sharp noises
ear pain
slurring words
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
Brain fog
muscle weakness
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
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.
hi, iv been suffering all of the above symptoms for alot of years a go. i dignosed with meniears disease last December and got prescribed a tablet called betahistermine, i have since been to see a ENT doctor who suggested iv have grommets in which iv had for three weeks and have made my hearing and other symtoms worse and have even getting a ear infection at the minite. iv just got a copy of the latest letter from my doctor from ENT say i have suggestive peripheral vestibulopathy and optical illusion what ever that means> life has been hard just to get to this point but im hanging in there and have accepted that im never going to be well again making the most of life for the here and now
O just saw your post and reply to my post on medhelp. I haven't visited the site in a long time and was curious to see what symptoms you have and if you're feeling any better?? I would have emailed you but it blocked the email address you posted. Looking froward to hearing from you!
Gina
Gina
Finally found someone who has this same crap going on as I do.. I thought I was going crazy, I am literally crying. It's so crazy I have CIDP and it's affecting me big ways. Please write me ***@****. Would love to talk to you all
I went misdiagnosed for over 3 years. Drs, specialists and my neurologist said I have migraines with vertigo. I tried so many meds, nothing helped. I cried alot and this condition turned my life upside down. I finally went for a second opinion. I am being treated for peripheral vestibulopathy. I go to pt and I'am on 2 meds. I'am doing much better, but I'am not well. The best thing I've done is not give up. All I can say to those suffering and feeling alone is to not throw in the towel. Don't give up, don't let this crappy sickness win. Fight it every inch of the way!!!!! It might take a long time but hang in there. I was about ready to die, and now I'm doing better, I'm not completely well, but I'm better.
Wow you both have been through so much.
I was recently diagnosed with peripheral vestibulopathy. I have many of the symptoms you both describe but not to the extent of yours.
How bad does this cause fatigue for you? I find that this is causing me some very bad fatugue some days, even when I've slept good, I feel like 'brain fog' or like my head is stuffed with cotton. Is this also common with vestibulopathy?
I was recently diagnosed with peripheral vestibulopathy. I have many of the symptoms you both describe but not to the extent of yours.
How bad does this cause fatigue for you? I find that this is causing me some very bad fatugue some days, even when I've slept good, I feel like 'brain fog' or like my head is stuffed with cotton. Is this also common with vestibulopathy?
Wow!! I could have wrote that! It took me years to get a diagnosis and I was beginning to think I was just going nuts. I had 99% of the symptoms you mentioned to the extent that I could hardly work barely get around enough to run my own errands. After seeing specialists and multiple doctors, it was finally an experienced ENT that referred me to Smyth County Hospital in Marion VA. Their Balance Center has a program developed from a similiar program at the University of Virginia. I went through 8 hours of questioning and testing. Finally, I got a diagnosis of Vestibulopathy with dysequilibrium. This was about 10 years ago. The only relief I ever got was through a Vestibular Rehab program through physical therapy. The symtpoms are still there and are a bit more manageable. With physicial therapy I got my life back and have come to accept the limitations, learned what to avoid, and avoid traveling any distance!!! If I can't remove myself from the situation that is perpectuating the problem, I actually black out. It was described to me as a nerve disorder in my right ear that sends delayed signals to the brain (approx 2-10 million per second). Because the brain is trying to filter out the millions of wrong signals from my right ear from the correct signals from my left ear, the brain becomes overloaded. They compared it to a computer trying to process information with a computer virus. Hope this helps. I was told there were no other treatments, surgery, etc., to correct this because it was due to nerve damage, likely caused by the repeated sinus and ear infections I was suffering due to my extreme allergies. The condition ***** and is definately debilitating. One of the worst parts is trying to make people understand just how bad it is because they don't understand, they can't "see" what is making you sick, and they think you're just dizzy, or car sick. I feel your pain.
Ok, so I dont really have the ear pain that you are describing. I do feel ear pain from time to time, and feel as though Im getting an ear infection, but I havent yet been able to attribute it to anything specific. The more I live with this disorder, the more I am finding out what triggers each symptom, but I guess compared to others with similar disorders im still a new comer.
I do not have the spinning and the nausea, the most bothersome symptoms I have at this point are the lightning bolts in my eyes (its the only way i have been able to describe it) (almost like a muscle twitch in my eye ball) the very sudden and quick lasting "oh crap im going to pass out feeling which is very short lived, (like a second or 2 and then its gone), and the lightheadedness mostly when I turn my head or I am very active. I also have VOR which causes various strange visual problems like blurred vision, double vision, loss of focus and just strange sensations that I cant really describe. It has been very disabling. I dont like to go and do much because the more i do, the worse I feel. Im scared to drive for fear that I will have a bad attack and crash, I dont like to go to the store because usually, i have horrible sensations as I walk through the isles, and loud noises about send me through the roof with symptoms.
I just went to an optoneurologist and got the same diagnosis that the ENT had given me which was peripheral vestibulopathy with visual ocular reflex. I am scheduled to go to another ENT on March 8th, and If I get the same DX from him, I think im going to quit searching for answers because it is causing me to much anxiety. I am taking a large amount of Xanax daily and it does help with some of the symptoms plus it is helping with the anxiety, I am switching to Valium in the next couple days because it is supposed to be better at helping to control the symptoms of the inner ear disorder. Well see!
Everyone keeps telling me that it is going to get better, and that my brain will eventually adjust and take over what the nerves in the ear are supposed to do. I have a hard time believing that, but I hope it is true. I dont want to have to live the rest of my life feeling this way. Surgery doesnt seem to be an option according to the drs ive been to and they suggested physical therapy, which I tried but it made the symptoms much worse.
Anyway, I would love to continue to chat so feel free to write back soon!
Thanks,
Gina!
I do not have the spinning and the nausea, the most bothersome symptoms I have at this point are the lightning bolts in my eyes (its the only way i have been able to describe it) (almost like a muscle twitch in my eye ball) the very sudden and quick lasting "oh crap im going to pass out feeling which is very short lived, (like a second or 2 and then its gone), and the lightheadedness mostly when I turn my head or I am very active. I also have VOR which causes various strange visual problems like blurred vision, double vision, loss of focus and just strange sensations that I cant really describe. It has been very disabling. I dont like to go and do much because the more i do, the worse I feel. Im scared to drive for fear that I will have a bad attack and crash, I dont like to go to the store because usually, i have horrible sensations as I walk through the isles, and loud noises about send me through the roof with symptoms.
I just went to an optoneurologist and got the same diagnosis that the ENT had given me which was peripheral vestibulopathy with visual ocular reflex. I am scheduled to go to another ENT on March 8th, and If I get the same DX from him, I think im going to quit searching for answers because it is causing me to much anxiety. I am taking a large amount of Xanax daily and it does help with some of the symptoms plus it is helping with the anxiety, I am switching to Valium in the next couple days because it is supposed to be better at helping to control the symptoms of the inner ear disorder. Well see!
Everyone keeps telling me that it is going to get better, and that my brain will eventually adjust and take over what the nerves in the ear are supposed to do. I have a hard time believing that, but I hope it is true. I dont want to have to live the rest of my life feeling this way. Surgery doesnt seem to be an option according to the drs ive been to and they suggested physical therapy, which I tried but it made the symptoms much worse.
Anyway, I would love to continue to chat so feel free to write back soon!
Thanks,
Gina!
Greetings from Maine. I have been suffering with something very similar to you since I had a viral infection back in November '05. I empathize with your frustration at trying to find a diagnosis. I have a "working diagnosis" of Vestibular Hyperacusis; it makes me EXTREMELY sensitive to sound, motion, and people moving around me. Was that ever mentioned as a possibility for you?
I find it very difficult to ride in a car, or go shopping, so I have been pretty much housebound due to this. I have almost passed out in the grocery store when there was feedback from the loudspeaker more times than I care to remember, and lord forbid mothers and kids come screaming and running down the aisle I'm in because of the pain, nausea and whirling. If I don't hold onto the shopping cart (I should say lean on it, because that's the only way I can walk unassisted), I feel like I would fall to the floor. Even my own voice sets off the pain at times; sudden laughter is a big trigger for ear pain for me.
It's like the more sound I hear, the worse my ear hurts, the more confused or drugged I feel, and the more tired I become. I was told those symptoms are due to the faulty messages my brain is receiving from my bar ear. The brain is trying to figure out which ear is telling the truth and it's becoming overtaxed.
It feels like the world spins and the floor is being pulled away from my feet when I hear loud noises most times. Sometimes it looks like the floor is moving and though they tell me to stop looking at it when I walk, I find I can't as I've fallen so many times.
What they think happened to me is that the virus I had in November '05 damaged some of the nerve cells in my ear so now when I hear sound, the sound is interpreted as pain and the pain varies according to the sounds I hear.
High pitched sounds cause stabbing pains deep inside my ear, sometimes I hear what I call "double tones" with kids voices, like a chipmunk track being played with their voices. It's kind of hard to explain. Medium pitch (people voices) cause this intense ache and I've also noticed the pain follows the beat or rhythm of the speaker. Low pitched sounds (semi trucks and motorcycles) cause this rumbling sensation behind my eardrum and almost an itch-type sensation as well. Do any of these symptoms sound familiar to you? I really hope they don't.
My doctors are also wondering if my problem is Central or Peripheral, and my ENG (have had 3 of them) tests come back abnormal. My Vestibulo-Occular Reflex (spelling?) has been damaged and though I do vestibular rehab exercises each day, I have not seen much in the way of improvement. Reading can be a nightmare as I get lost in sentences, sometimes my eyes jump up or down a line or two, so I have to place something under the line I'm reading and go very slow to get it completely. I've been working on this post for about an hour now and I find proof-reading as I go helps a lot. Enlarging the font helps too.
In my case, a high resolution CAT scan showed I had a superior canal dehiscence (one/more hole(s) in the semi-circular canals in my ear). I had surgery for that in May '09 and though it helped some of the other weird symptoms I was having, I'm still pretty incapacitated by this condition.
We did find that some medications have like a nerve block capability and actually help reduce some of the pain. You could ask your doctor if he/she feels something like that might help you. I've also found that medication for the nausea is a big help too.
Don't give up: keep looking for the answer. I know it's confusing, all this medical jargon being thrown about, but hang in there and be persistent. Some doctor, somewhere will eventually put the puzzle together, tell you what it is, and help you the best they can. I'm sorry you're going through this; it really *****, but you're not alone. Hang in there.
S.
I find it very difficult to ride in a car, or go shopping, so I have been pretty much housebound due to this. I have almost passed out in the grocery store when there was feedback from the loudspeaker more times than I care to remember, and lord forbid mothers and kids come screaming and running down the aisle I'm in because of the pain, nausea and whirling. If I don't hold onto the shopping cart (I should say lean on it, because that's the only way I can walk unassisted), I feel like I would fall to the floor. Even my own voice sets off the pain at times; sudden laughter is a big trigger for ear pain for me.
It's like the more sound I hear, the worse my ear hurts, the more confused or drugged I feel, and the more tired I become. I was told those symptoms are due to the faulty messages my brain is receiving from my bar ear. The brain is trying to figure out which ear is telling the truth and it's becoming overtaxed.
It feels like the world spins and the floor is being pulled away from my feet when I hear loud noises most times. Sometimes it looks like the floor is moving and though they tell me to stop looking at it when I walk, I find I can't as I've fallen so many times.
What they think happened to me is that the virus I had in November '05 damaged some of the nerve cells in my ear so now when I hear sound, the sound is interpreted as pain and the pain varies according to the sounds I hear.
High pitched sounds cause stabbing pains deep inside my ear, sometimes I hear what I call "double tones" with kids voices, like a chipmunk track being played with their voices. It's kind of hard to explain. Medium pitch (people voices) cause this intense ache and I've also noticed the pain follows the beat or rhythm of the speaker. Low pitched sounds (semi trucks and motorcycles) cause this rumbling sensation behind my eardrum and almost an itch-type sensation as well. Do any of these symptoms sound familiar to you? I really hope they don't.
My doctors are also wondering if my problem is Central or Peripheral, and my ENG (have had 3 of them) tests come back abnormal. My Vestibulo-Occular Reflex (spelling?) has been damaged and though I do vestibular rehab exercises each day, I have not seen much in the way of improvement. Reading can be a nightmare as I get lost in sentences, sometimes my eyes jump up or down a line or two, so I have to place something under the line I'm reading and go very slow to get it completely. I've been working on this post for about an hour now and I find proof-reading as I go helps a lot. Enlarging the font helps too.
In my case, a high resolution CAT scan showed I had a superior canal dehiscence (one/more hole(s) in the semi-circular canals in my ear). I had surgery for that in May '09 and though it helped some of the other weird symptoms I was having, I'm still pretty incapacitated by this condition.
We did find that some medications have like a nerve block capability and actually help reduce some of the pain. You could ask your doctor if he/she feels something like that might help you. I've also found that medication for the nausea is a big help too.
Don't give up: keep looking for the answer. I know it's confusing, all this medical jargon being thrown about, but hang in there and be persistent. Some doctor, somewhere will eventually put the puzzle together, tell you what it is, and help you the best they can. I'm sorry you're going through this; it really *****, but you're not alone. Hang in there.
S.
There are many, many things that can cause people to feel dizzy or imbalanced. A significant proportion of these people have what are considered "central" causes. In other words, the problem would appear to lie within the central nervous system. You should bring your ENG test results to a Neurologist (or perhaps a different ENT doc).
Can you tell me some of your symptoms so we can compare and maybe I can ease my mind a bit?
Please ignore the advice by 'loidiasis'. What complete nonsense.
I completely agree with your suspicions and confusion. Judging by what you wrote, I would not consider this likely to be a peripheral vestibular condition. In fact, what you describe sounds more like a central pathology.
I recommend another opinion!
I completely agree with your suspicions and confusion. Judging by what you wrote, I would not consider this likely to be a peripheral vestibular condition. In fact, what you describe sounds more like a central pathology.
I recommend another opinion!
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