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

Thank you for reply & yes I've seen a Professor of Neurosurgery & due to location & size is in operable.
Sub Arachnoid cyst they are not sure if I was born with it or gained it when I was squashed by a stone wall about 4/5 yrs old...massive head bleed & have scare at back of skull & one on for head...Juli

I have this disease as well. I was diagnosed in August 2017. I’ve had a tough year with little support from my family. I had Covid plus ongoing changes with this disease. Stress makes it worse.
How am I coping…well tonight it tears and fears.
I try to keep busy with things that take my mind off the symptoms. As mentioned in other posts my doctors don’t want to talk with me about the progression if this disease.
Let’s try to hang in a little longer. I am hoping discussions with this group will help.

Hello , I was just myself diagnosed with this 2 days ago after having 3 weeks of loss of balance and mood changes . I asked for an MRI and my dr gave me the result over the phone , she didn’t suggest any kind of treatment or discuss anything about the disease with me or even refer me to anyone . I’m only 53 years old . Not sure where I go from here .

Hi I'm in same boat 50yrs old had ischemic brain disease 4yrs later servere cerebrovascular disease & I'm asking Do you burn up while asleep to a point it wakes you up & cannot cool down but when I do I'm freezing cannot seem to control body temperature & a feeling my brain been squeezed?

Ps they put me on Statins for it but considering I don't have high cholesterol or high blood pressure had a reaction to them. I'm on 75mg Asprin for life due to having ischemic colitis & bled out....however I do feel a difference when I've not taken it..

I was diagnosed last year at 65 after several balance/fall issues. I have several areas with brain cell loss as well as lacunar strokes. Unfortunately, there is no treatment. My best advice is to live life to its fullest and keep knocking off that bucket list! Don't focus on things beyond your control. I think that most neurologists are reluctant to admit that there is nothing that they can do and try to avoid the difficult but necessary discussions regarding the natural progression of this disease.

Hello , no that doesn’t happen to me , are you sure that’s not hormone related ?

I would be very interested in research such as SRINT re cerebral microvascular disease. I have no risk factors other than hypertension which has worsened since my diagnosis 1 1/2 yrs ago. I have no cognitive issues, but I want to be proactive. I am 70 yrs old, on no meds except for my hypertension and vitamins and meds for anxiety. Cholesterol, weight etc are not elevated. I have always been health conscious, and this is frustrating. I exercise (usually walk almost an hour a day), do not smoke, eat low fat low cholesterol and low sugar.
Is there any study that could help me and others who are at low risk yet have white matter lesions? My MRI report described my lesions as extensive in both cerebral hemispheres. My neurologist reported them as " several white matter lesions mostly subcorticol and periventricular in nature occasional white matter changes. I would appreciate any result studies with recommendations that I can actually do in addition to exercise. (nutrition, supplements, etc) My B/P range for the last week has been 150/80. I am on Losartan 100 in AMs and Toprol 25 mg at night.
Thank you for any advice..

I have this. I was diagnosed after I had a stroke. I am hav I am having a difficult time as well with balance and dizzy spells, heart palpitations, very effectiveness rate, blood pure problems. I think my disease is progressing. I was walking 35 miles at least a week. Now I can get light headed and be done any activity.

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?