Thatās interesting. Iāve never heard that beforeā¦ To add some context to my situation Iāve had this condition now for almost 2 years. I had a VNG test done about 6 weeks after all this stuff started and the results were said to be normal. After a year of having this stuff I asked a different doctors office to repeat the VNG test and they found an abnormality in the caloric test. It showed a 50% weakness in the left inner earā¦ So, Iām not sure if the first test was not done accurately or if the left sided weakness happened sometime later during the first yearā¦
So I did 3 months of vestibular rehab. I did the exercises around the clock everyday for 3 months and I havenāt been able to make any improvement. When I first started the rehab the physical therapist did some tests and thought I already had most of the compensation already dialed in. She thinks what dizziness I have is probably migraine related.
The other strange thing to me is the weakness is suppose to be on my left inner ear yet all the migraine and walking issues have been on my right side. Iām not sure how to figure it. My only thought is that maybe the body is dialing up the sensitivity on the right side to try and compensate for the left side and causing a migraine type of hypersensitivity. I donāt know if that theory would make sense or notā¦ I donāt know if its true but Iāve heard it said that people that go blind sometimes there mind/body adjusts by making other senses more sensitive to help them compensate. I wonder if that logic could be applied to my situation except my mind/body isnāt doing a very good job of itā¦
So you have stopped the VRT? Was she saying because of the link to migraine she can take you no further forward? Consensus is that migraine being central doesnāt respond to rehab as peripheral does so is not wirth pursuing.
Doesnāt the brain work opposite sides. Left side brain controls right side body. Iāve read that somewhere. If indeed thatās right.
I had an MRI done a few weeks after this condition first happened. The MRI was normal. No indication of stroke. I donāt know much about hydropsā¦ Iāll have to do some reading about it. What I can say is that I donāt have any tinnitus and the hearing tests Iāve had seem to be normal. I had a 2nd MRI done about 1.5 years after this condition started. The 2nd MRI I was told that it was normal. I never saw the results on the 2nd MRI but I have the findings from the 1st MRI. I will copy and paste them below:
FINDINGS: Distinct nerve roots are identified within the internal auditory canals on the thin section T2 images. No mass lesions are identified. The inner ear structures appear unremarkable. The cochlea, vestibule and semicircular canals are unremarkable. The cerebellopontine angles are unremarkable. There is a slightly high riding right internal jugular old.
A slightly prominent normal variant arachnoid granulation is identified within the left transverse sinus. No abnormal areas of signal intensity or contrast enhancement are identified within the brain parenchyma. Specifically, there are no areas of restricted diffusion with no gradient echo signal abnormalities. No extra-axial fluid collections are present, and there is no evidence of intracranial mass effect or midline shift. Unremarkable ventricles and cortical sulci. Intact midline structures with no evidence of cerebellar ectopia. Normal vascular flow voids.
I have to follow up with her sometime next month. Iām not sure what sheāll want me to do. Before all this stuff happened to me I used to workout 5 to 6 days a week. I was in great shapeā¦ I did this rehab about as good as anybody could do it. I did the exercises around the clock for 3 months. Almost every hour I was awake. If its possible to do to much of this stuff I might be guilty of it. I donāt know. All I know is that after 3 months of this rehab I havenāt seen any improvement.
Bear in mind that the standard clinical MRI is only able to rule out neuroma. A great thing to rule out, however! A new cutting edge MRI is being rolled out but costs $15k a pop.
You sure can. You must have robust system āunderneathā because VRT and particularly too much VRT can make MAV ~far far worse for some people. I was one! Itās nothing like āworking outāto keep fit. Itās not aquestion of making say your eyes in better physical shape so they cope better. Itās supposed to develop new neural pathways in the brain. Iām not certain of the figures but there are some somewhere on the internet which tell you if VRT doesnāt work - ie cure - within n period of time, it never will so quit it, Helen
I realize thereās a difference. My point was to say that I pushed through all the difficulty to do the exercises as good as I possibly could. I didnāt slack in doing the exercises even though they were extremely nauseatingā¦ I wanted to make the point that the rehab didnāt fail because of lack of work on my half.
Yep. I got your point. For me the very fact youād kept doing VRT three months, youād obviously given it everything you could. I did it myself 50 minutes five times a day for six months so I know how nauseating it makes you. The failure to compensate wouldnāt be your fault for not trying hard enough. Possibly you tried too hard but I think thatās very unlikely as it didnāt have any detrimental affect in your MAV. Unstable MAV just doesnāt respond to VRT for many people. Helen
I have been diagnosed with MAV, I had unsteady walking at the beginning especially if I got out of a car and started walking, I would feel dizzy and like the ground was sponge for a couple of minutes until I adjusted. Thatās gone now but if someone is talking to me while Iām walking or standing that makes me dizzy and I canāt concentrate on the conversation, it has improved but still not gone.
Thanks for writing this. That was definitely helpfulā¦ My physical therapist says that these walking issues arenāt a normal symptom to have with a neuritis so I wanted to get an idea if itās a typical symptom of VM. It sounds like some people with VM get some of these walking symptoms that I have but it also sounds like itās not nearly as frequent as I do. I have theses symptoms regularly. Some days it feels more like Iām slightly tilted when Iām walking but on my worst days its like stepping into a hole. Iāve mentioned these symptoms to some of the doctors Iāve seen and theyāll ask to see me walk and then they seem disinterested in talking any further about it.
I think Iāll ask my neurologist to do an EMG on my leg and try to reemphasize the walking problem isnāt a normal symptom of a neuritis.
Good morning @porter44, ahā¦ the classic therapist opinion vs neurological opinion vs ENT opinion vs our reality. Walking issues are absolutely a symptom that I would say most of us have. Tilting is another strong MAV symptom. Or the illusion of tilting I should say. I can be standing still and feel like I am at a 45 degree angle. My therapist completely understood this and in her opinion and education something she had seen many many times, completely normal. Standing on the cushion with eyes closed doing VRTā¦ I felt like I was thrashing aroundā¦ when the reality was (per my therapist) I was a absolutely still as a board.
I have had an elevator drop feeling which is similar and have read that people with mav have this . Essentially any symptoms with a balance problems is possible . Iāve had mav 12 years and Iāve never had the trampoline feeling but have had much of what you describe .
A
You got it in one Amy. The VRT Therapist told me to āexpect anything to happenā, and she was just about right. Iāve never - yet - had the trampoline one either but then Iām over fifteen years in and Iāve only caught you up with the āderealisationā thingy a couple of weeks back. Plenty of time yet. Iāve had all manner of seemingly strange leg sensations. Iāve had the feeling the ground was too close so your foot sort of collides with it or too far down so your foot flatters and has to go on further to reach ground. Rather your foot stumbles. Not you but just one foot. Iāve had walking with āwoodenā knees or āconcreteā knees, they donāt seem to give at all. Iāve had āball bearingā knees where it feels as if your knees are rolling around in over their joints. Itās all balance related and in my case Iām sure stems from the MAV. Tilted is another one. That one I found can be imagined or actual. Iāve had both. As example if the MAVās bad and my balance is really off Iāve noticed my hairdresser will always be straightening up my head whilst cutting my hair. The actual tilt goes to my right, always. On a good MAV day my head is correctly aligned and she doesnāt have to straighten it up. The ātiltingā extends to field of vision. Some days I feel taller, as if Iām looking down from being higher up than usual. All tricks the brain plays or more likely all tricks the body plays whilst the brainās fully occupied trying to keep us upright without its usual easy access to the proper and correct sources to do so. Helen
Could I suggest you read - part at least, I realise itās very lengthy - of the paper I posted recently on āVertigo of Ocular Motor originā? Particularly, the two paragraph section entitled āVisual Guidanceā and āthe 8th paragraph under the āVisual Vertigoā section. May be something to which you can relate. Helen