I know that a lot of you have been here quite awhile, but I hope I can jump in here with a question and plea for help. I am a 55 yo f , I am disabled by chronic vertigo and now, MS. Medically I understand a huge amount about vertigo, both peripheral and central, but I have a symptom that causes neurologists and neuro-otologist to get glassy-eyed and start looking for the exit.
This post is going to be long, because my problem is complicated, but I hope you will read it and someone will be able to help.
My vertigo began in 1983 with a severe concussion. I now know that I had untreated BPPV at least. It was active only occasionally, but I was still able to pursue my career. I had a particular symptom that was NOT the BPPV, and twice I tried to describe it to neurologists who all told me nothing was wrong. The symptom was: When my eyes glanced to the left I would have swirling internal paroxysms of dizziness which felt just like nystagmus, but there was no obesrvable movement of my eyes nor "batting back and forth" of the objects in my visual field.
7 years ago after a very severe, inner ear infection, the vertigo became disabling and daily, resulting in several falls, 2 more concussions, multiple hospitalizations and forced me to leave pediatrics. I wound up a patient of Dr. John Epley (of the Epley Maneuvers). He diagnosed and treated bilateral BPPV and surgically closed a left perlymph fistula. This improved me to the point that I returned to work for a year, but then slowly the vertigo worsened and I couldn't combat the mental fatigue and cognitive problems - left my career permanently. Diagnosis - chronic AutoImmune Inner Ear Disease without hearing loss (much). Complicating this was the development and diagnosis of multiple sclerosis over the last 2 years.
I remain badly disabled, often bedridden and the fatigue is almost insurmountable. Always dizzy, nauseated, off balance and now with weakness and spasticity on my right side.
My most disabling symptom still mystifies all my doctors. Dr. Epley believes me, but doesn't quite get what I am saying. My MS neuro who also is a neuro-otologist calls the symptom "sensitivity to eye movement," but I'm not sure he believes it's as disabling as it is.
The Problem: If during the day I am at all active with my eyes - computer work, reading, out in the car, or in noisy (visually or auditorally) environments, I quickly develop mental fatigue. I always have tinnitus toward the left, but when fatigued, a new tinnitus joins in. The sound is rough, like a thunderous waterfall or amplified white noise. It is painful. That is when THE symptom starts. Any movement laterally of my eyes to the left, even a glance, stimulates the internal sensation of paroxysmal whirling. I have 2 to 7 "beats" of the "whoosh, whoosh" just like in BPPV, but it is all internal and invisible. It is immediately nauseating, within a few minutes if I don't rest and close my eyes, the phenomenon appears also with rightward glances. At this time I cannot think, make decisions, read, find the right words, walk straight or tolerate light or sound. Even lateral movements of my eye when they are closed stimulates the reaction, though to a lesser degree.
My new neuro said this was "Sensitivity to Eye Movement." But I don't think he really believes me. He suggested possible causes of Post-concussion syndrome, migraines, anxiety or depression. This is not a panic or anxiety reaction. I have no problems with anxiety at all. And it is definitely not a vegetative somatization!
Have any of you ever heard of such a problem? It seems backward. It should be the vertigo causing the abnormal eye movements. Instead the eye movements initiate the vertigo. Any ideas? I would really appreciate it.
Last edited by neuroquix; 06-17-2007 at 12:26 AM.
Reason: removal of personal info
The Following User Says Thank You to neuroquix For This Useful Post: Crowpeak (03-20-2012)
I am so sorry to hear about everything you have been through, that's rough. The one thing that leapt out at me in your description is the sensitivity to light and sound at the time that these symptoms are happening. Your neuro does sound like he is off track with the anxiety and depression - but he may have been on track with the migraine. In my case it seems likely that peripheral vestibular damage, probably viral in origin caused a migraine problem to resurface. About three years after initially getting vertigo I developed a severe light sensitivity along with the dizziness. I was subsequently diagnosed with migraine associated vertigo. The clincher in establishing this diagnosis was the sensitivity to light which isn't a feature of an inner ear disorder. Migraineurs can also be noise sensitive during attacks - I have also experienced this.
It seems migraine can be responsible for any number of weird sensations.Mine - as is the case with many people who have MAV - was got under control with a daily migraine preventative - in my case propranonol. MAV is a diagnosis of exclusion - generally reached by trialling drugs and if one works then migraine is the cause. It might be worth trying a preventative - seeing if it has any effect.
Wish I could be more helpful, but as I said, that was the thing that really struck me.
I too have an eye problem that no one seems to be able to resolve. I have a sense of dizzyness 24/7. If I look to the right laterally, I will feel a buzzing/pulsating/electrical feeling coming from my left eye. It's very difficult to describe the sensation. I also sense that there is a lessening in sound from my left ear when this "electrical" feeling occurs. It too has a "beat."
My right side has another problem! Three years ago, spontaniously (sp?), I felt a "gush" of fluid go into my right ear. Later on, I noticed that my right pupil had dilated. The pupil does, however, react to light and will contract properly. This gives me another sensation of heaviness on the right temple, a pulling from the eye and a sense of dizzyness. When I have a "good" day, the pupil is normal size and the dizzyness lessens.
My tale is actually incomplete. I would need my own web page to go into all the details! I have seen countless neurologists, neurotologists, eye doctors, neuro-opthamologists etc. etc. etc. I live in NYC and have been seen by prominent doctors.
To date, the buzzy/electrical/pulsating feeling is supressed by my taking zoloft. I also discovered that valium will surpress it as well. My right eye problem is not resolved yet but I have not given up on finding out what is wrong.
Linda, the "gush" of fluid was my first symptom of the perilymph fistula. From then on it was a tick, tick .. of dripping fluid from the inner ear dripping perilymph fluid into the middle ear. With a fistula, the vestibular center has unstable pressure and can suffer irreparable harm from dessication if it doesn't heal itself or is repaired surgically. Quix
hbep - Thanks for the point toward migraine. I do have fairly classic migraine, but they are controlled on Effexor. I never considered that this could be migraine without headache. I'll ask about a preventative. Right now I use hydrocodone, which is surprisingly effective and we're trying a scopolamine patch - no change noted in three days.
Lot's of stuff you've got in there, you're a brave one really, and a fighter, keep it up.
I agree with Hbep, considering Migraine, or something related, maybe developed by your multiple concussions.
I've experienced that kind of stuff during attacks, which left me feeling weird, both visually and mentally I've exerienced this way long before I got vertigo, back on my teens.
Now with the vestibuar stuff added, I've been feeling, pretty much like you describe, where some changing in focus on my computer, or form some visual point to the other, or watching neon lights, it can make me sick.
This is the first time I've experienced this visual dizziness, besides the jumping and oscillating vision which has been my main visual problem the last year and a half.
And even as this visual vertigo is really new for me, and sometimes gives me trouble tracking objects on and off screen, it is almost always joined by the typical "off feeling" that I can relate to Migraine.
Maybe you should dicuss this with your doctors, I hope you find and answer soon, and wish you the best of luck.
Last edited by stargrave; 06-16-2007 at 07:11 PM.
Reason: Extra info
Did your fistula happen after an accident or some sort of trauma? Or was it spontaneous? Please describe your symptoms as they occured. I'd appreciate any information.
Hi, Lynda, I'm pretty sure my fistula occurred at the end of a commercial plane flight. I was already in the throes of chronic labyrinthitis and about 1 month after my worst concussion. The flight was about an hour long, and as we descended I felt the ear fill with fluid (or that's what it felt/sounded like). I became horribly disoriented in space (not cognitively) and left the plane in a wheelchair. Things seemed to settle out to my baseline dizziness for the rest of the day. The next morning, when I sat up and swung my legs over to the side of the bed, I just kept going. Even though my eyes were open I had no sensation of vertical and went right on over to the floor. It felt totally weird. Not the paroxysm of BPPV, no whirling, just an inability to orient myself upright. That passed after a while 20 minutes or so and I felt normally wretched.
But, that day and every day, after I had long episodes of hearing an almost rhythmic, steady "tick, tick" at the eardrum. Sounded for all the world like a faucet dripping. And many mornings I would again go through the complete loss of proper orientation in space when I first got up out of bed. This was not at all lightheadedness, but an inability to perceive or establish "vertical." No active whirling, just like I would imagine weightlessness to be.
That went on for several months. Meanwhile Dr. Epley was trying to tease out my various problems. One day he checked for Tullio's phenomenon, or "postural destabilization" in response to ear pressure (got really dizzy) and then sound pressure. As he put a sudden 80decibel 500Hz tone into the left ear, I lurched violently backward, as if I had been thrown by a scifi force field (literally!) slammed back against the wall and fell. This was definitely a "postive postural destabilization test!" He went over with me (he's in his 70's). When we both recovered he said quietly, "I think you have a perilymph fistula." He set me up for exploratory surgery. Found a large tear in the oval window from the inner ear to the middle ear with active leaking. He patched it. I felt really great after surgery and was able to return to work for a year.
He believes that that exposure of the inner ear to the rest of my body is what likely prompted the autoimmune attack on both vestibular organs. All my problems initially were on the left (except the BPPV). After a couple years, all the dysfunction suddenly appeared on my right side, too. There are certain places in the body that the immune system can't see under normal circumstances. Examples are the nucleus of the eyeball and the inner ear. If, for some reason, the proteins from that tissue gets exposed, then the immune system, having never seen it before, mounts an attack. Initially the right side quieted down with high dose steroids, but the effect wasn't long.
Then when, I developed leg weakness and spasticity, he predicted that it was also an autoimmune problem. Two years later I got the firm diagnosis of MS.
Way more than you asked. Sorry, some people are accident-prone. I am word-prone. Back to the fistula. The prior concussion may have weakened the area, but I'm pretty sure the barotrauma of the plane's descent is when it popped. There are several good articles about PLF on line, at Epley's site, Hains' site and at VeDA.
I don't know that all people have the sensation either of a large amount of fluid entering the ear or of the dripping that I noticed. But, when it happens there is often a sudden loss of spatial orientation. It can be hard to diagnose. First there has to be a high index of suspicion, then if supected, it can be searched for either by a teeny, weeny little fiberoptic scope or by exploratory surgery thru the eardrum. Dr. Hain is particularly suspicious of whether this is a common or uncommon occurance and how it should be handled.
There is a support group for people who talk too much. It's called
I had a concussion 18 months ago that I am still recovering from. I can relate to the symptoms you described about eye movements causing fatigue. I get fatigue and pain from any kind of focus or eye movements. Another person that posts here on the message boards about inner ear disorders told me that I may be experiencing vestibular migraines. If I go without resting the migraine increases as does the dizziness and the next thing that happens is I cannot think, comprehend, or read. My sister has tried to carry on a conversation with me during these migraines and I'm totally unable to converse. I can talk but she has to repeat everything because I seem to go to 'la la' land. I find that the things I used to enjoy so much are no longer enjoyable, such as watching a movie, reading, writing, web surfing, long drives in the car...they are exhausting and cause migraines. I also noticed that I can't process instructions very fast. When someone is trying to tell me something important I need them to state everything slowly. If there are too many things said too fast I pretty much lose the whole thing...meaning....I couldn't tell you what they just said or the gest of it. In the beginning of the concussion I thought that moving my head made me dizzy. I soon learned that moving my eyes did too. I can sit in a room looking around and feel a 'wave' come on. The dizzy waves are not as long as they used to be but sometimes they feel more intense and cause me to feel panic. Anyway, my neurologist says it's post concussion syndrome. My VNG showed a loss of equilibrium in my right ear. I do want to say I'm so sorry that you have been through so much and I hope that you are doing better now. If you still read these boards please let us know how you are doing.