1. < Stroke & Cerebrovascular Diseases

I have Cerebral Small Vessel Disease: How are you coping?

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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sally12345 | @sally12345 | Feb 11, 2023
In reply to @amandajro "Hello @sally12345 and welcome to Mayo Clinic Connect. I am so sorry to hear of your..." + (show)
@amandajro

Hello @sally12345 and welcome to Mayo Clinic Connect. I am so sorry to hear of your decline.

Members such as @alabast0552 who recently joined this discussion as well as @keithl56 and @angelicscripts may be able to come in and share more with you about their journey.

What sort of treatment plan are you on, if any?

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Hi Amanda, I was diagnosed 3 years ago after a stroke, I am on a statin, blood pressure pills and an aspirin . I was extremely active person . Chopping and stacking my yearly wood for win t we , shovelling, walking 2 .5 miles first thing in the morning and a t supper. Taking care of family members that are high stress.

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sally12345 | @sally12345 | Feb 11, 2023
In reply to @amandajro "Hello @sally12345 and welcome to Mayo Clinic Connect. I am so sorry to hear of your..." + (show)
@amandajro

Hello @sally12345 and welcome to Mayo Clinic Connect. I am so sorry to hear of your decline.

Members such as @alabast0552 who recently joined this discussion as well as @keithl56 and @angelicscripts may be able to come in and share more with you about their journey.

What sort of treatment plan are you on, if any?

Jump to this post

I am on a statin, high blood pressure pills , an aspirin a day, my heart is erratic, I fire very easily, and am losing interest in everything. Altho my cardiologist is ordering nuclear testing, she feels the disease is progressing and there is little probably can be done. I'm looking for any input from anyone. Dizzy spells and off balance has become a problem....anyone have any symptoms like this.

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2 replies
keithl56 | @keithl56 | Feb 12, 2023
In reply to @sally12345 "I am on a statin, high blood pressure pills , an aspirin a day, my heart..." + (show)
@sally12345

I am on a statin, high blood pressure pills , an aspirin a day, my heart is erratic, I fire very easily, and am losing interest in everything. Altho my cardiologist is ordering nuclear testing, she feels the disease is progressing and there is little probably can be done. I'm looking for any input from anyone. Dizzy spells and off balance has become a problem....anyone have any symptoms like this.

Jump to this post

Hi Sally,
My symptoms are very similar to yours, with some memory problems and TIA's as well. Unfortunately there isn't much you can do about it as your doctor stated. My neurologist said "you can't rotoroot your brain". Exercise is probably the best thing, exercising your body AND your brain. Hopefully the additional brain cell death and lacunar strokes cause by CSVD will not be too rapid and you'll be able to enjoy life for a long time. Good luck!

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sally12345 | @sally12345 | Feb 24, 2023
In reply to @jeans "The doctors suggested a low fat diet? Did they say any thing about exercise? Five years..." + (show)
@jeans

The doctors suggested a low fat diet? Did they say any thing about exercise? Five years ago I used to run about 3 miles a day. The things I've read make me think that that kind of thing may be a thing of the past. My eyes are acting up. Some days it feels as if I have someone else glasses on. ( I don't wear glasses.) I've lived a fairly healthy life, no smoking, regular exercise and stuff like that but I am almost 60 and it is a progressive disease. They've recently moved my appointment up to June 20th. I'm glad about that. I want to hear what Mayo has to say.

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Hi, I was diagnosed with csvd 3 years ago. I had an episode of off balance, dizziness, lose of bladder a nd bowel, heavy sweating, diagnosed with having had a stroke. I feel at this point it's effected my everyday life. At the time I was shocked with it...but now, I am tired, lack of energy, off balance, very sore eyes as well now. Also heart palpitations ...I think it's worsening...At the 3 rdyear point. Up to last year I was walking 35 miles a week. Chopped a nd stacked my own wood.. Now I am weak...it's frightening. How do you keep going with this.

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2 replies
googleit | @googleit | Oct 11, 2023
In reply to @jeans "The doctors suggested a low fat diet? Did they say any thing about exercise? Five years..." + (show)
@jeans

The doctors suggested a low fat diet? Did they say any thing about exercise? Five years ago I used to run about 3 miles a day. The things I've read make me think that that kind of thing may be a thing of the past. My eyes are acting up. Some days it feels as if I have someone else glasses on. ( I don't wear glasses.) I've lived a fairly healthy life, no smoking, regular exercise and stuff like that but I am almost 60 and it is a progressive disease. They've recently moved my appointment up to June 20th. I'm glad about that. I want to hear what Mayo has to say.

Jump to this post

maybe you need to wear glasses - most people over 50 do. you might find the properly prescribed glasses would hep a lot - apart from which the optician woul by able to answer any questions you have, I hope this helps.

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jdspouse | @jdspouse | Oct 12, 2023

My husband was told he had the beginning of CSVD when he had his first stroke in 2015 but he had problems with insufficient blood supply to spine as a child so don't know if the CSVD comes from that. He was told to stay hydrated, low fat diet and low salt (watch cholesterol & BP), and exercise (brisk walking at a min) at least 30 min daily. We were told there is no "cure" but with diligence it can be managed. I would like for him to watch things closer but he seems to be fine. Yes, glasses definitely would help with eye strain as well as avoiding too much screen time with electronic devices. If you can get in with a Neuro-Opthamologist they have been the most helpful in keeping his eyes healthy.

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sally12345 | @sally12345 | Nov 8, 2023

Hi, I have done posts on here before so I won't get into all my symptoms from csvd. But I'm wondering does anyone have problems with extremely sensitive taste , sensitive feelin g in your tongue and problems with biting the sides..

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red79 | @red79 | Mar 22 8:52am
In reply to @caregiver49 "I don't think small vessel disease of the brain is well understood and it is difficult..." + (show)
@caregiver49

I don't think small vessel disease of the brain is well understood and it is difficult for any doctor to prepare one for what to expect. Symptoms occur due to changes to different parts of the brain so vary from one person to the next. Dr Michael Zeineh of Stanford University has been in the news recently about a relationship between Chronic Fatigue Syndrome and White Matter brain changes. Keep in mind that brain changes are more extensive in some patients more than others. Hopefully those with less will live to learn bio markers are confirmed that will lead to treatment. Presently my research has not turned up much other than controlling cholesterol, Blood pressure, thinning blood which is basically stroke prevention. Best to all.

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Hi I've also got small vessel disease of the brain.i don't know much as I'm still waiting on neurologist contacting me,last time I heard by phone call last October,I try to keep my mind off it by playing games on phone like jigsaws and quizzes.ive been put on blood thinners and BP tablets,I'm dieting and having steady walks as I walk with a stick.

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red79 | @red79 | Mar 22 9:42am
In reply to @sally12345 "Hi, I was diagnosed with csvd 3 years ago. I had an episode of off balance,..." + (show)
@sally12345

Hi, I was diagnosed with csvd 3 years ago. I had an episode of off balance, dizziness, lose of bladder a nd bowel, heavy sweating, diagnosed with having had a stroke. I feel at this point it's effected my everyday life. At the time I was shocked with it...but now, I am tired, lack of energy, off balance, very sore eyes as well now. Also heart palpitations ...I think it's worsening...At the 3 rdyear point. Up to last year I was walking 35 miles a week. Chopped a nd stacked my own wood.. Now I am weak...it's frightening. How do you keep going with this.

Jump to this post

I'm so surprised that I've found someone who is having bladder problems like me ,tired lots, heavy sweating, stay strong do hobbies to keep your mind off it sally.

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1 reply
angelicscripts | @angelicscripts | Mar 23 6:13am
In reply to @red79 "I'm so surprised that I've found someone who is having bladder problems like me ,tired lots,..." + (show)
@red79

I'm so surprised that I've found someone who is having bladder problems like me ,tired lots, heavy sweating, stay strong do hobbies to keep your mind off it sally.

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Neurogenic Bladder I've an issue with bladder Signals from brain misfiring ...

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