Sorry, Auto correct changed spelling on title of my previous post-
Looking for information or anyone having any experience with feeling lightheaded with PSP diagnosis? My husband has not been confirmed with PSP diagnosis, but it is a possibility . We are seeing a movement disorder neurologist and PSP has been mentioned as a possible diagnosis at his last appointment. He has complained about feeling lightheaded for several years since his symptoms started.
Yes my husband used to complain of feeling light headed way before diagnosis and he also described a feeling of waking up feeling drunk/ hung over along with double vision sometimes
Hi
That is often a fairly early symptom of PSP/CBD, but it can be caused by other illnesses too.
With PSP/CBD the part of the brain which processes the signals from the inner ear (the vestibular system), becomes compromised and it can no longer processes the balance signals properly. This causes the brain to 'hunt' for orientation and balance. The result is vertigo, a sense of being very drunk, the world sort of swims around the sufferer. I believe there is no treatment for this. However our neurologist said that as the illness worsened and more brain was compromised it usually diminishes.
There is a lot of good information here:
Once you have a diagnosis, whatever that diagnosis is, you will be able to go to specialist websites to get advice and information which will enable you to prepare practically in advance. I wish you the best at the next appointment.
Best to you both.
Kevin
Thanks so much for responding. You sound quite knowledgable about these disorders. We are learning and trying to prepare as best we can regardless of if, or when we get a diagnosis. My husband has always been very healthy and active, so this is surely a life changing journey.
Thanks, but there are many here with a lot of experience and knowledge. Together this forum is a wealth of useful info.
I know a little... The research is now on full throttle and it co-ordinated across the globe, to a large extent. That reduces duplication. Some years back folk realised that by the year 20** (I can't remember the date) most developed nations would need their entire workforce to care for those with dementia. PSP/CBD are in that category. So massive funding for research was set up.
Yes, it is life changing! At first it is a little scary and many find it daunting. I went through that stage. After a while we just accept, adjust and settle down to doing the caring. It's always a little heartbreaking though.
I do wish you the best with the diagnosis.
Yes That was my husband's first symptom well before diagnosis.
I hope that you don't have PSP but if you do then this site is a life saver.
Fingers crossed for you both.
Jean xxx
A clue for the Doctor who first diagnosed my dad with PSP was his lack of blinking in his eyes. And yes my father did feel lightheadiness at times also.
Head Restraint for wheelchair passenger in WAV
Christmas Lights a No Go
A little light in the darkness
