I have seen my Neurologist again and just found out thst i could have some vestibular nerve damage which has caused a nystagmus also. I’ve been suffering with balance issues ever since being diagnosed with a venous sinus thrombosis in august 22. Just wondering if anyone else has had this and if it has sorted itself out, what you fid to help cope with it. I believe the damage was caused by the pressure in my ear which msde me deaf at the time of the onset but the hearing returned after a number of weeks. It also had an affect on my eyesight too. Any advice or information would be appreciated. Thank you. 
4 Likes
Hi @smeadows1975
There are 14 post mentioning vestibular nerve that turn up if you use the magnifying glass to search.
Lots more balance 
A skim over them will give you a lot of background and discussion of aspects that might be relevant and suggest other searches that may be worthwhile
Caio
Simon
1 Like
Hello,
nystagmus and balance issues ; did your venous sinus thrombosis turn into a hemorrhage / full blown stroke ? Just recently I pointed out an episode where a lady with balance issues (she couldn’t stand upright) eventually regained her balance. Bach-y-Rita was the scientist who enabled her to walk unaided by substitution of the vestibular system with other sensory organs by retraining the brain, plasticity etc… I think it’s in the book "The brain that changes itself " by Doidge… I can check for you, but that book would be a good recommendation for you.
Sorry if that hasn’t helped,
good luck, Roland
3 Likes
Yes, that is the correct book. The lady that overcame her faulty or absent vestibular feedback was called Cheryl Schilz in Chapter 1. It’s an interesting read - food for thought
Good luck, Roland
2 Likes
Hi, thanks for your reply. No i didnt hemorrhage thank goodness. I had a blood clot in the sigmoid, transverse and internal jugular. They told me it was a stroke and then ssid no stroke so I’m still not sure but when you research the condition it says it is a rare form of stroke. Either way, I’ve been left with many issues.
3 Likes
Ah sorry about that, but fewer issues than if you had a full blown stroke, I hope. Still, I wish you good luck as you work your way through the issues. A bit of will power, and the 3 Ps will get you a long way
ciao, Roland
patience, practice, perseverance
ps. my wife added positivity
3 Likes
From what I know, having nystagmus myself that, apparently, there is a null spot that can relieve the symptom. I have yet to find that null spot but do look out for it when turning my head when the nystagmus is severe. They say there is no cure for nystagmus, so I guess it is a prognosis scenario. I too have vestibular problems but they stem from the damage the stroke caused to my brain.
3 Likes