Charlie

[Marg52]

Hello all just to ask has anyone else seeing there loved one complaining of being dizzy? Charlie keeps saying he feels dizzy and at this point we have stopped seeing any neurologist there’s no point they all say to just keep him comfortable, my daughters and I don’t except this, so tomorrow I’m bringing him to physical therapy. Also if anyone out there knows Dr. William Severt please have him reach out to me. Charlie really needs to speak with him. He was the only Dr. That cared he has since left his prectice and dose clinical trials.

Thanks

Margdj52

[daffodil48]

Dizziness was my husband's main complaint from the beginning and he still has it four years later. Has had all kinds of tests and nothing was found to cause the dizziness

[Kevin_1]

Hi Margdj52

The explanation we were given for it from a leading specialist neuro in PSP:

The part of the brain which processes balance from the middle ear can become compromised by the PSP.

It can no longer process the messages of balance from the middle ear.

Then what parts of it are still functioning constantly seek up and down and balance. Without a proper signal it keeps shifting its 'output' and vertigo results.

He went on to say that if that part of the brain gets further compromised then the vertigo ceases. However it can last many years and sometimes not.

Miserable

Warmly to you both

Kevin

[Marg52 in reply to Kevin_1]

Thank you the has cut his caobid/dopa way down. Is there anything he can do at this point? 12 years is a long time for him. Is there advise you have.

Thank you

Marge

[Kevin_1 in reply to Marg52]

Sorry Marge not for the dizziness. Some folk have tried scopoderm patches. It frequently causes drowsiness and a dry mouth. I have not seen any reports of it helping.

Best to you

Kevin

[DeDeDickson]

Like, daffodil48, my husband has always complained about dizziness. I used to think that it was too much carbidopa/levodopa but I can no longer correlate it to the meds. Frustrating for them, I’m sure ... as I see the increase of inactivity when dizziness is the “complaint du jour”.

[allotmentartist]

Yes my husband has complained of dizziness since he was diagnosed ,doesn't seem to be getting any worse or better x

[doglington]

Yes. Dizziness was the first thing my husband complained about - years before diagnosis. Well before he started taking levadopa. x