Cerebral Small Vessel Disease - How are you coping?

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.

I take Zetia and Rosuvastatin to try to manage the progression of my CAD, and since I am asymptomatic I don't need anything else. Unfortunately, the first symptom can be a fatal heart attack!

I was diagnosed with CSVD because I was having syncope type episodes and they did the neuro workup as well as the cardio workup. My MRI's show multiple hyperintensities where the ischemia is killing off brain cells as well as evidence of multiple lacunar strokes. I also have an abnormal EEG which is to be expected. My next neuro appointment is 3/12, so maybe I'll get some sort of update that I can share with you.

So far I don't think that this disease has yet manifested much in the way of cognitive problems except for a few isolated symptoms. My main problems are balance/fall related, occasional aphasia or slurred speech, and asymmetric hearing loss with tinnitus. I think everyone can have quite varied symptoms depending on what areas of the brain are being affected. If you have an MRI that states what areas are being impacted you can probably look up what functions are associated with that area and see if your symptoms correspond.

The most important thing is to live your life and not dwell on the negative (easier said than done). When my cardiologist called me with what sounded like a death sentence it shook me up. I started taking some antidepressants and anti-anxiety drugs to help me cope and have since been able to wean myself off of some as I came to terms with everything. I also did some cognitive behavior therapy which was beneficial. Do whatever you need to do to take care of yourself. Hopefully you have some supportive friends/family since that can help as well.

Best of luck!

Your MS diagnosis is interesting. My sister also was diagnosed with MS, and just recently they told her that many of her symptoms are likely caused by CSVD rather than the MS.

Hi Keith,
Have not been tested for CAD.
In retrospect, it's easy to see a slight change over the last three years with employment history and other things. One year ago, I had a barrage of symptoms that ended up leading to an MS diagnosis, but my memory caused my neurologist to persist with more tests. An aEEG confirmed his suspicions of CSVD. He has just prescribed Oxcarbazepine which I hate with a passion, too many side effects, I see him again in April when I believe he will give me the dreaded 'D' diagnosis. I would love to know if this is hereditary as dementia as well as Alzheimer's runs in my mom's side of the family heavily.
As for your situation, do you take specific medications for either CAD or CSVD? Or just meds to control symptoms?
I appreciate the contact, any information is GREATLY appreciated.
Hang in there.

Sorry to hear of your diagnosis. I'm not aware of any support groups, but think that it would be a good idea.

I also have CSVD. It is scary knowing that you have a progressive disease without treatment options. It is insidious, but you may be fortunate and it might not manifest with serious implications for quite a while.

What happened that prompted testing that led to the diagnosis? Are you already symptomatic or was this found through routine testing? Have you been tested for CAD as well, since these go hand in hand with both being caused by the same mechanism (plaque build up)?

Hang in there and enjoy life to its fullest before CSVD has a chance to impact your life.

If you want any information that I have researched or just want to vent please let me know.

HelloJust started searching, are there good support groups for CSVD and resources?Thank you in advance for any thoughts, comments and suggestions.

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..

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.

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.

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.

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!