Light headed

[Andrashko]

My husband has been diagnosed with MSA-C for going on 4 years now. He just recently started getting what he explains as "light headedness" when he first gets up in the morning. He has taken his blood pressure and it seems to run very low, not sure if this is why he feels this way. I believe this is part of the progression of his disease, but just wanted to reach out and ask anyone about this, if you experienced this? Not sure if we need to have him see his doctor, or it will just be one of those, "yes, that is part of the disease". So scary for him, as all these symptoms start happening. Also anxiety over not knowing if there is something wrong, or "just" the disease

[Yanno]

Hello Andras, Yes I am sure this is just part of the progression - low blood pressure on sitting or standing is very common - Jackie, my wife has started to be very troubled by this. As we have found out there is no quick fix. I would talk to your doctor or neurologist as your current medication may be making things worse - Siminet is renowned for this.

There is a very helpful item on the MSA Trust web site that talks about postural hypotension as it's called. You can find it here: msatrust.org.uk/wp-content/...

There are some trials being carried out into a new drug to control hypotension in MSA patients - if you look back on the posts you should be able to find the details otherwise reply here and I will add a link.

Please urge your husband not to worry, it's something many with MSA have to work through and you will find many friends here who will help him on his journey.

Take care, Ian

[Andrashko in reply to Yanno]

Thank you Yanno. I know the clinical trial he is in, they ask him every time about this, and up until now, he did not have it. I think our biggest fear is when new things happen, to know whether its the disease, or something else. We live in Colorado/ USA, and there is not alot around here to get help from with this disease.

[Yanno in reply to Andrashko]

We have some really good friends who live in Aspen, Colorado and we used to visit them every other year - we loved it. If you look at the MSA Trust web site you will find some really good information about the aspects of MSA. Don’t get overwhelmed by the issues, sadly as you know the future is always difficult but everyone has a different experience. Like any journey even if you know where you are going, different people will take different routes.

Keep in touch, take care, Ian

[falcon946 in reply to Andrashko]

What trial is he on? I presume he is with a MDS then? Please suggest he drinks a glass of water before standing. They also suggest more salt and compression stockings. I know the doctors might suggest you raise the head of the bed as his blood pressure may actually rise with laying down at night. There are a number of good Facebook groups that can also offer support...MSA buddies etc.

[Andrashko in reply to falcon946]

He is in a clinical trial with Rocky Mountain Movement Disorders out of Lakewood, Colorado. movementdisorderscenter.org/ Sad part about it is, he was able to walk without any assistance when the trial started, and now he can't walk without assistance. Makes us think he is on the placebo and not the drug. Very disappointing, but that's the cards we are dealt.

[TK-67]

yes- the lighthead is due to the low BP, there is medication that can help but it is sadly part of the progression of the disease. My mum really struggles to control hers now - she can also have very high BP. She does spend a while just sat before she stands now - it does help.

[vis1]

My sister had real problems with blood pressure around the time of her initial diagnosis of MSA. She had several horrible falls with one resulting in her needing to have a plate inserted in her hip. However, through trial and error, a combination of MSA drugs and blood pressure pills, seem to have made falls happen less frequently so I really hope that your doctor can help sort this out.J