I have Cerebral Small Vessel Disease - so far caused loss of balance

Posted by sue60 @sue60, Apr 11, 2016

I have vascular small vessel disease that so far just has caused a severe loss of balance. I walk with a cane, but it is getting harder. Likewise exercise is not easy. I still drive short distances. I feel perfectly normal lying down and it is so much easier to do that. The sad part is I don't really see anything that is going to end this as otherwise I am healthy. I know there are many worse things. Does anyone else have this and how are you coping?

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mwmc777 | @mwmc777 | May 29 7:45pm

Had Brain MRI today and diagnosed with Global Microvascular Ischemic Disease! See Neurologist in 2 weeks! Any treatment options? Had bad AFIB episode on Jan 28. 2025 and since have had issues with vision. balance, frequent headaches, fatigue, CT Scan during hospital stay did not show a new stroke, but had 2 in 2018 and 1 in Jan 2024 but recovered well from those. MRI in Jan 2024 following stroke did not show this new diagnosis! Had not had an AFIB episode for 15 months prior to the Jan 28th one, but these other lingering problems had me worried. Any suggestions on slowing/stopping this new progressive problem! 76-year-old female! Thanks!

g1315 | @g1315 | May 26 3:23pm

In reply to @tcainaru "My balance is off and feel weak. Also lightheadedness, these are the main issues. What symptoms..." + (show)

Those are mine as well. And often my head feels very heavy, as if it's too heavy for my neck, which throws my balance off even more.
My opthalmologist mentioned astygmatism, and adjust my lenses for that, only it made it worse. I'll be returning for another attempt.

g1315 | @g1315 | May 26 3:20pm

In reply to @lisalucier "Hi, @g1315 - tagging a few members who may have more information to share with you..." + (show)

Thank you for tagging others. My symptoms are mostly my balance and my head feels very heavy at times, which is quite scary when going down my stairs. I stop and get myself stable before I take another step. I've started balance exercises again, and I'm thinking about getting a treadmill now that it's getting so warm outside.
I thought symptoms were post-stroke, but after 3 years, I wondered if it's more CSVD instead of post-stroke.

tc1945 | @tcainaru | May 21 1:06pm

My balance is off and feel weak. Also lightheadedness, these are the main issues. What symptoms do you have?

Lisa Lucier, Moderator | @lisalucier | May 21 10:52am

In reply to @g1315 "Hi, Debbie, I'm wondering if you found more information about CSVD? I had an ischemic stroke..." + (show)

Hi, @g1315 - tagging a few members who may have more information to share with you on cerebral small vessel disease such as
@cheyne @tcainaru @dle25 @red79.

Which symptoms are bothering you most, g1315? Has anything helped with them?

g1315 | @g1315 | May 20 4:03pm

Hi, Debbie,
I'm wondering if you found more information about CSVD? I had an ischemic stroke in 2022 (I'm 74 now) and that was when I was told I have CSVD. I'd never heard of it before the stroke. Seems many of the people in this group who have that are experiencing the same symptoms I am, which I thought were from the stroke. Interested for any replies.

cheyne | @cheyne | Apr 21 7:02pm

Hi,
I wonder if the left suffers more with right footed people, the right being the dominant foot is used to leading. I find my left leg is instructed to step following the right, but occasionally it doesn't happen. The instructions seems to be lost between the brain and muscles doing the work. At 73 the brain has learnt to check the left has taken the step before taking the right step and I notice I concentrate more on walking than ever before. I'm able to hang up my walking sticks for the moment with my new ability to react quick enough to catch myself and just stumble a little.
Cheers

joanm56 | @joanm56 | Apr 21 5:22pm

In reply to @cheyne "Hi, I find it remarkable that mostly it is the left leg that is problematic with..." + (show)

Yes unfortunately I have a week left side and one or two of my do. my mother had a weak side and she had this also.
Her nurse constantly told her to lift her leg higher when walking.

joanm56 | @joanm56 | Apr 21 5:19pm

In reply to @dle25 "Hi, I am 68, I too was diagnosed at the moderate level. I keep as busy..." + (show)

I was put on antiepileptic meds. They caused severe balance issues dizziness. I felt misdiagnosed. I got off of it. I’am less and less dizzy all the time I’m hopeful that scared to try riding a bike again I go up and downstairs a lot during the day that seems to help build up my muscles. I think it’s really important to if you can afford therapy to go to therapy.

keithl56 | @keithl56 | Apr 20 3:42pm

I also have worsening CSVD. My doctor sent me for vestibular therapy. I think it helped and I continue to do the recommended home exercises. It's not a magic bullet but every little bit help.