Hi all, Wondering if anyone has experienced dizziness after 'recovery'? If so, did it lead to anything else? We live in fear of another attack, but wondering how many of you experienced the same.
Background
Husband diagnosed with ADEM Dec 2015. Progressively became worse, transferred to a larger hospital, high dose antibiotics with no improvement, plasmapherisis with improvement after 2nd (of 5) sessions. A total of 5 weeks in the hospital, 2.5 in ICU/Neuro ICU with tracheostomy performed. Had a great recovery with minor problems until this past week (week and a half). He is finding that he is dizzy and loosing his balance. Only ongoing med is Propranolol (high blood pressure); finding that his blood pressure is fairly normal during times of dizziness. Dizziness occurs when moving from laying down to a standing position and is not due to lack of eating or rest.
FYI my son was diagnosed April 2015. We did not notice any dizziness but as they same every case is different. Our neurologist is regularly checking my son's blood work around every tree months. The last time visit it showed that his B cell counts were too high and the neurologist recommended chemotherapy as a preventative measure. The plan is to check his blood levels and only if they deem it necessary will the proceed with chemo. The plan is to monitor him over the next five years to prevent a relapse as he had a very severe ADEM attack. The last MRI showed most of the lesions have healed on the right side of the brain and lesions on the left side of the brain slowly healing, still visible on the MRI but not active. It is our understanding that the myelin will only grow once the lesions have healed this is why his recovery is taking so long. When he laughs profusely, this happened three times, he loses his balance and falls to the ground. Not sure if this is a side effect of the ADEM or if it will go away once the brain is fully healed.
My husband had ADEM in 2012. He had severe double vision which gradually got better. He was dizzy during and now after. Not sure if it partly his meds but he was dizzy before the meds too. Balance is very bad and he is in a wheelchair for the most part. He really can't walk without assistance.
I had an ADEM attack 16 years ago and am still dizzy daily. I was told it had to do with damage to the part of the brain that controls hearing. I went for vestibular therapy. The only thing that helps me is to do everything slowly and not turn my head suddenly. I cannot look at oncoming traffic that really affects the dizziness. Good Luck!