Dizziness? My wife has no help for that and its the biggest problem.

[snapper]

Has anyone had any positive results in trying to help dizziness? My wife has no help for that and its the biggest problem.

[shasha]

is she on any drugs at all >?

[snapper]

Not for PSP

[easterncedar]

It would be great if there were something. My guy complains of dizziness, too, and can't understand why there isn't anything the doctors can do to help it. Now if it's not PSP-related, maybe there is. We had a friend who had crippling bouts of dizziness, and he says his chiropractor fixed it somehow, after his GP had given up.

[jillannf6]

H I used to get dizzy when b4 dxd I had bouts of labyrinthitis (inner ear probs) but when i,had to stop swimming it went and i have not and the dizziness since

Does,she have to

Stay in Bed.?

:-)lol jill

[LynnO]

My husband has dizziness pretty much all the time. what I understand with PSP it is not really being dizzy like if you have an inner ear problem. Has more to do with the function of the brain and eyes. If he doesn't have a dizzy feeling, usually he has other issues with his eyes, like blurry, or double vision. He isn't on any meds except for Cymbalta, mostly for anxiety and crying issues, and Ambien CR for his insomnia. It is very frustrating for him also.

[snapper in reply to LynnO]

Hi LynnO Sounds as though he has a side effect called pseudobulbar palsy. Lppk it up. In the US they have a drug called nuedexta we have a workaround in the UK called Dextromethorphan. It enabled my wife to socialise.

[Hidden in reply to snapper]

You may find it interesting to note that in one trial with Nuedexta versus placebo, the main side effect was "dizziness" (in 26 % patients versus 9% placebo).

Cheers

T.

[snapper in reply to Hidden]

I saw that info but it did not seem to be replicated in some other trials. My wife suffered severe Pseudobulbar palsy to the extent that it was almost impossible for her to go out even to the supemarket. Dextromehtorphan reduced the effect by about 90%. However, we have recently run a test to cut it out and she is managing without it. It seems the severe Pseudobulbar phase has now passed. PSP seems ever evolving.

[Hidden in reply to snapper]

Good to know your wife is now managing without this particular medication.

The official nuedexta information site states that it supports its effectiveness for pseudobulbar affect in ASL and MS but it has not been shown to be safe and effective in other types of emotional lability (pseudobulbar affect) that occur in such conditions as Alzheimers and other dementias (and I assume that would include PSP, although prescribed by some Drs and neurologists). Neverthless, it appeared to help with your wife's condition.

It also mentions that one of the common adverse reactions (second on their list), is dizziness. It then emphasises extra caution with patients who have motor impairment affecting gait and a history of falls (cardinal problems in PSP).

All the best

T.

[snapper in reply to Hidden]

It just served a purpose for about 6 months and enabled at least some quality of life Thanks for yr replies. J

[daughter_Julie]

My dad had this too at the start of his illness, not everyone seems to get it. Dad found sitting or lying helped but no solutions sorry. X

[mcfly]

I have psp and dizziness. From what I know balance is like a triangle. Our brain get information from three sources.

1. Our eyes

2. Our inner ear

3. Our sensory feelings/ messages which travel along our spinal cord - like messages from the muscles in our feet and toes that help steady us upright.

If one of these sources is faulty we can still maintain balance. If two of these sources are faulty we get dizzy an lose our balance. My belief is that two of these senses are bad. I know one is my eyes as they do not aim well and they do not fixate for very long.

I am not a scholar or a doctor so I might be full of shit. But I do believe this.

[Kevin_1 in reply to mcfly]

Thanks mcfly - that helped my understanding.

[Hidden]

This was mum's main problem for the first few years before diagnosis and I don't think it ever went, she just gave up telling people . I believe that it was caused by her eye muscles varying in day to day strength. She sometimes looked a little cross eyed. I think some of the meds may help and some may worsen it. Like a lot of things with PSP it's trial and error but also fluctuations occur regardless of what you do.

[Kevin_1]

Dear Snapper

I am sorry, no.

(Drugs aside as per other posts)

It is one of my partners big problems too.

She was diagnosed as suffering from labyrinthitis for a year before we got a PSP diagnosis.

Essentially the PSP is affecting that part of Lizzie's brain according to her neurologist.

Not so much dizzy according to him, but vertigo, no balance orientation.

Maybe someone else has better news.

Warmly

Kevin

[mombcd12343]

Kathy,

your answers are easier to read double spaced lilke they are. thank you very much

barbara daughtry

[e-mail]

[mcfly]

snapper, I would like you to try this. Tell youur wife to do her best to NOT LOOK DOWN for one day. (tying her shoes, reading and even wallking or sitting she should try and just look ahead, not down) See if that helps any. If you have a TV move it up to an even height..

[snapper in reply to mcfly]

That could be a problem as she has to keep her head tucked down when eating to aid swallowing otherwise she chokes. Thanks for yr input.

[Beaterwell]

Dizziness is a big problem for y husband as well. So far no answers which is so frustrating.

[snapper]

Thanks to all for yr replies, it seems that we have to live with the dizzyness/vertigo.