I finally found a way to describe my symptoms. It's like I am in a snow globe, and when I move my head (at all), it's like I'm being jousled all over the place. When I stop moving my head, I'm fine. When I do my vrt exercises, it's the same thing. It's not helpint at all.
I'm seeing a neuro-otologist/opthalmologist who says just keep doing them and try ping pong or Tai Chi, which I will when the opportunity comes up.
I guess I'm just whining, and would like to know if anyone has had any success stories for this weird kind of eye-brain problem that causes imbalance. If I rest and don't do much, it gets worse... not good days and bad days, it just keeps getting worse. Thanks.
Hi Dee, i'm same as tyou rep the VRT stuff. It's 6 years now and They Have never helped, doing them for months and months on end, not one iota of difference. I told ,one physio, my balance isnt so much the issue as my body has readjusted (For The best part!, except when i'm really tired or sick with something else)?. I asked "how,do I get rid of,this awfull feeling in my head'? and she said she didnt know!!!! More or less said keep,doing the exercises and that will help the head! Sorry that doesnt work for me. Seems that they all have the same hymn sheet they sing from and if you dont fit or react the way they expect it's tough! I've given up on the lot,of them and will,continue,to,do my own research. dint know if you watxhed that episode of Medical,Mysteries in a young woman who,had it (Much worse than me)mand she had the same go,around and ended up,having to raise 50,000£ to go to the US wheremthey found something our lot didnt!!
I have exactly the same, its called oscillopsia, I describle it as like my head being shook when walking or moving my head, everything is bobbing up and down! There is a very good video on Youtube which helps other people understand as its so difficult to describe.
I have eye gaze excersises which I have to say have not had much of an effect, but I guess I am coping a bit better through getting used to it and gaining confidence with the poor balance.
Thanks Jan. Yes, I saw that video and luckily I don't have it that bad, but bad enough to keep me off-balance. I do the gaze exercises too, have been for 11 months, but they don't help.
I am now thinking there is an ongoing problem, like migraine-associated-vertigo. Going to try and increase my vitamin D levels and B6 levels (they are both very low, in the single digits), and see if that helps, along with the preventative migraine Magnesium pills that my doctor suggested in the past.
P.S. Neurologist has done the head-thrust on me, but I was able to read the letters he placed in front of me, so he was doubtful that I had oscillopsia. I definitely do, though, because I described the to a "T" before ever reading about it. It's also called retinal slip; oscillopsia is the symptom you get from the retinal slip. I had poor bilateral v-o-r tests which made my ENT come to the conclusion that I had the oscillopsia. It's very tiring. I don't even remember NOT having it.
dee do,you not have a computer? (You must have if you are here on line) You dont need Cable as you watch it on line., . so for example you google Channel,Five catch up (think theirs is called My Five) it,comes up on google and just click on that which takes you to the Page, in the search box put Medical Mysteries and see the one that has a synopsis about a woman with balance problems and off you go! (It has three different peoples problems It I think)
Ok, thanks Gillian, I will try that. A lot of the time I try to get something and it says you must have a cable subscription though, such as on ESPN shows.