Do other PSP sufferers with vertical gaze palsy have chronic dizziness - just trying to figure out if these two symptoms are connected.

[LyndaEllis]

My dizziness forces me to lie down all the time and I am wondering if my vertical gaze palsy is causing it. But if there are people who have vertical gaze palsy who are not always dizzy, perhaps it is not.

[Hidden]

Hi Lynda

Dizziness has been described by many PSP sufferers, often just before they fall. If the sufferer had no dizziness before the first symptoms of PSP/CBD, then it is likely to be caused by the disease. However, one has to eliminate other causes like ear problems (and diseases like Meniere's), artery problems to the brain, hypostatic hypotension and even medications like L-Dopa

The cause in PSP may be harder to determine. It could be related to vertical gaze palsy, where some researchers suggest there is damage to the VOR (vestibulo-ocular reflex), and that involves brain pathways for eyes and ears. Then the cause may also be associated with the damaged balance mechanisms in PSP (mid brain to cortex relays along with cerebellum damage). Then some sufferers with PSP have autonomic nervous system damage that can cause lightheadedness and dizziness (mainly associated with low blood pressure).

I guess it could be a combination of all the things above, and any medication suggested by a neurologist would need to "suit" the cause.

Not all PSP sufferers experience what you are experiencing, and again, this shows the wide variability of symptoms and severity with PSP.

It must be devastating to feel the way you do, and debilitating. I do hope you find some help from your neurologist with this symptom.

Best wishes

T.

[snapper in reply to Hidden]

Hi Lynda my wife has severe dizziness, it is the main effect of her PSP along with her emotional incontinence. Maggie is on able to walk in the house with the aid of a walking frame now.

Strelley thanks again for your detailed explanation. Maggie has always had very low blood pressure, no one has mentioned this before. I will push for a look at this aspect.

Thanks J

[LyndaEllis in reply to snapper]

Thanks forr taking the time to write ! I will think about what you have said.

[chopra123 in reply to Hidden]

This is useful, thanks

[cabbagecottage]

My husbands balance is very bad but when I ask if he feels dizzy he says no .

[SharonAB]

Dear Lynda Elllis,

My husband had some dizziness issues - started happening before other PSP symptoms. Diagnosed as a type of epilepsy without the usual epileptic attacks. I wondered if it was stress related as John tends to internlize issues - and didn't like trying things new, Blood pressure over the years has been generally low side of average, but when dizzy was high... now irregular and being monitored by doctors each month or so.....

Regards

Alana - Western Australia

[mcfly]

Yes, Dizziness was my first symptom. This was before I every started taking any meds. I just want to lay down which makes me seem lazy. My dizziness feels like I'm going to lose my balance. My brain is getting bad information.

[jimandsharynp]

My wife started with balance issues long before diagnosis of PSP. She felt dizzy but not all the time. I really don't think that is due to vertical gaze. Usually the gaze issue comes after other symptoms, as I've been told. I think that if you are dizzy with eyes closed or when not moving it probably isn't the vertical gaze. Of course we have to always remember PSP acts different in patients. Depends where Tau is destroying cells at the moment. It's not like a broken collar bone that is in the same place in our bodies and if broken we know exactly where it is located. PSP affects all brains but possibly in different areas of each individual brain. That's why some start with falls while others only balance issues and yet others personality changes or speech changes. Unfortunately that's the hand we've been dealt, nothing is certain. Not length of life, what happens next, or the severity of a particular symptom at any particular time. May you be blessed as you travel your PSP journey.

Jimbo

[Hidden in reply to jimandsharynp]

My husbands first symptom was dizziness or as he described it feeling spaced out which really overruled his life and he only felt 'normal ' when he was lying down,but when he mentioned it to any of the experts they seemed amazed and said it wasn't a known effect of PSP !!!! We know better now.

But the upside is as his illness progressed the dizzy feeling left him but the downside is his illness has progressed I think pretty quickly, he can no longer talk or write or communicate other than thumbs up thumbs down and even then he sometimes seems to confuse them.

His swallowing is very poor and he salivates badly.

His waking has all but gone and all he can do is watch television and I wonder whether he can see that really.

Such a bloody cruel disease I HATE PSP!!!!!!!!!!! It has stolen my one and only and I can't do a think to help

[jimandsharynp in reply to Hidden]

Joey, yes I share your feelings. PSP is terrible! I've been able to not dwell so much on the unfairness of it an concentrate one day at a time. We aren't looking beyond tomorrow. I firmly believe that with the right outlook we, you and I, can weather this devistating disease. Bless you and your loved one.

Jimbo

[mcfly]

All I have to do is go into a room that is dark or go outside at night when theree is no moonlight and ii get diizy. Or in other words I feel like I am losing my balance and I gave to grab on to something. Even though I hate bright lights, I can't stand up in total darkness. On another PSP site several have also noted this oddity. Ask your person with PSP about this and they might concur.

[chopra123]

My grand dad has psp and he complains of dizziness too.