light headless

[ncgardener799]

It has been over 3 years and we are still searching for a conclusive diagnosis for my husband. So far PSP has been mentioned, but not confirmed ,as it is not any easy disorder to test for . He regularly complains of light headed feeling and has been tested for inner ear balance issues and has had MRI, Ct scan and dozens of blood tests. Anyone have any information or experience with the light headed symptoms ? Thank you

[Marie_14]

One of he symptoms of PSP is low blood pressure. This can cause lightheadedness and lead to falls. My husband had low blood pressure for many years but we didn't know why. Check his blood pressure and if possible keep a record.

Good luck to you both.

Marie x

[amadis1]

I am in a similar position to your husband. What is his eyesight like?

[ncgardener799 in reply to amadis1]

He has glasses with a prism in the lens that helps with distance double vision which only occurred when he was driving several years ago . It has made a big difference for him. He can read without any difficulty at this point. He has been seen by a neurological opthamalogist to test for vertical changes. She does not see any evidence of change. We have been seeing specialists for more than 3 years and so far nothing conclusive for a diagnosis.

[Marie_14 in reply to ncgardener799]

Maybe that is good news? You are never sure with this. Glad the prism glasses have made a difference.

Marie x

[Marie_14 in reply to amadis1]

Sadly my husband died two years ago.

I still read the posts in case there is anyone I can help. You will find others who do the same.

My hudband's eyesight failed towards the end and he was unable to read or look at TV. He never said he couldn't see TV but he got cross if I put it on saying he wasn't interested.

I realised he couldn't read when he was on the same page for a few nights and I asked him was he really reading or pretending to read, and he said: "pretending"! That was so sad as he loved to read. A horrible condition! We suffer as carers even after they are gone. Wish I could give you some good news but sadly it is progressive. Until they find a way to halt it or keep it under control. We all live in hope that future generations won't have to suffer from it.

However there are lots of things that can help along the way. Make sure you get a break every once or twice a week if only for a few hours. Don't know where you live and that does matter with regards to help you are entitled to. I am in the UK by the way.

Hugs to you both.

Marie x

[AJK2001]

Mum used to complain of feeling dizzy and light headed alot, her blood pressure was fine, this was before diagnosis, carried on for years, not so bad now but still has her moments.

[SewBears]

It’s possible to have more than one condition, which makes for a difficult diagnosis. Someone mentioned that there are 8 different types of dementia and they all fall under the same umbrella. Many people don’t have a confirmed diagnosis until an autopsy of the brain is performed. It’s a lot of trial and error to treat the symptoms. If a certain drug works then it helps narrow down what it could be and vise versa. If a drug doesn’t work, then it’s most likely not what they thought it was.

A DAT scan of the brain could help to rule out Parkinson’s, but Parkinsonism traits are still a possibility. We’ve found out that hubby has a splash of Lewy-Body, a lot of CBD and a sprinkle of Parkinsonism.

His first symptoms were lots of fainting spells. Diagnosis goes back to the late 90’s when the doctors said he had Vasovagal syncope. Blood pressure monitoring and blood pressure pills were the only thing the doctors could do. Hubby continued to faint until he broke his neck in 2005. Since then we’ve been dealing with what we thought was a traumatic brain injury caused from the neck injury. Now we are told that the neck injury and the CBD diagnosis are not related. Hubby still gets light headed and he still faints sometimes. I watch the coloring in his face and I can usually prevent a fainting spell. If his face pales, I have him lie down on the ground and gently lift his feet slightly above his head, to get the blood flow back up to his brain.

All we can do is treat the symptoms. I’m afraid in our case we won’t really understand the true diagnosis until autopsy. I guess I’ve been dealing with this long enough that this is no longer a shock to me. I hope this isn’t coming across as brutal. I’m just telling it like it is.

Keep on keeping on.

Xoxo from I SewBears

PS forgot to mention hubby also suffers with double vision

[ncgardener799 in reply to SewBears]

Thanks for sharing information. I appreciate everyone sharing their experience.