Mayo Clinic Connect
I suffered a Cerebellar Stroke in Dec 2015 in my 40s and am interested in connecting with other cerebellar stroke survivors to share our experiences, testing/therapy options, struggles on the path to recovery.
Liked by Merry, Volunteer Mentor, Brightwings AKA Cute Susie, ausian1967, phemmert
Hi @strokesurvivordynamo, (I love your username.)
Thanks for kicking off this topic. Given that cerebellar strokes account for less than 10% of all strokes, this is an important discussion group to form so that survivors can share their road to recovery together. Can you tell us a bit more about your story? What impact has stroke had on you? Did your stroke affect the left or right side? How is rehabilitation going?
Liked by ausian1967
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At 48 and relatively healthy, I didn’t fit the typical stroke profile. I have great cholesterol, am a non-smoker, a casual drinker, I don’t have uncontrolled high blood pressure, I’m not a diabetic, and have no family history of strokes.
If you’re like me, you’ve read the Heart & Stroke material and watched the ads on TV. We’ve been trained that if you think someone is having a stroke, act FAST and do the following:
Face – is it dropping?
Arms – can you raise them?
Speech – is it slurred or jumbled?
Time – to call 911 right away!
My daughter thought I was having a stroke when it was happening and administered the FAST test – I passed it. I could do all of these things! That test works for the majority of strokes but not all. A cerebellar stroke, like mine, accounts for only 3% of strokes. MY warning signs didn’t fit the profile.
Instead I had the Three Vs – Violent Headache, Vertigo, Vomitting. Any of these signs coming on suddenly without explanation, alone or especially together, are enough to call 911. Even if your symptoms go away, you need to see medical treatment as you could have had a TIA (mini stroke).
For every minute delay in treating a stroke, the average patient loses 1.9 million brain cells. That is terrifying! It was 4 hours before an ambulance was called to my home the night I had my stroke.
I had felt “off” two days before and paid my Doctor a visit because I felt so strange it worried me. I described it as “feeling like Alice in Wonderland and I didn’t belong”. I now know that sensation is called disassociation and is a sign of a cerebellar event.
My Doctor couldn’t find anything wrong and said maybe I was fighting a virus. So when I suffered my stroke, my family thought I had a bug and checked on me every 30 minutes as I continues to battle the Three Vs. Not until I collapsed on the bathroom floor did they fear the worst and dial 911.
Liked by jmjlove
Ischemic stroke – left inferior cerebellum
How scary this must have been @strokesurvivordynamo. After 911 was called, what do you remember? What happened next?
Did you ever get answers here? I also would like to connect to someone that has “been there” as I has so many questions and find so few answers.
I not only have been there I AM there, I have zero Balance and my Eyes jump wherever they want to …
Did you also have a cerebellar stroke? I have cognitive issues only – no physical struggles.
Have you tried Binocular Vision Therapy for your vision Nystagmus?
Are you having any other stroke symptoms? Why is your balance an issue? When was your stroke?
Liked by elizabethcharis
My Stroke was about two years ago, I had no or little symptoms at the time, except that I suddenly was very dizzy and my Eyes didn’t go where I wanted them to go … today was an especially bad day, I had to leave a card store where I looked for cards, I got nauseous and dizzy, barely made it out of the store … anyone else with those Issues .?
Liked by Teresa, Volunteer Mentor, ausian1967
I am like that after almost three years. I had two brain bleeds after a TBI during a car accident. Shopping brings it on, especially a store where one must scan items visually or be moving while looking around. First, my head feels like it is twice its size, tinnitus starts, my eyes feel blurry and I begin to feel completely overwhelmed with my shoulders tightening up. Often feeling sick to my stomach. I have a complication: my neck was also broken and a bony bridge never healed. Each day some part of it is given over to dizziness, although after this long the periods of not being dizzy are increasing somewhat.
Liked by Teresa, Volunteer Mentor
Have you tried Binocular Vision therapy for the Nystagmus with your eyes? Are you working?
I find shopping overwhelming as well. My Neurologist told me it is called brain flooding – too much to process at one time. It makes me feel like I’ve run a marathan – I get exhausted and I can’t keep my eyes open – need to head home for a nap.
My Neurologist told me that my head and shoulders tighten because of Nystagmus in my eye – my head and shoulders are trying to hold my world in focus. I get a humming sound in my ears (sounds like the recycled air noise on an airplace) before the headache begins.
I have to shorten the amount of time I go out shopping and I used to love heading to outlet malls to shop-for-sport for a day. No longer!
it has improved from the early days after my stroke but I can maybe shop for a couple of hours at the mall but not during crazy busy times.
I find it affirming of my experiences that people explain much the same going on with them. It is isolating to feel so Not Normal, but when others who have felt the same express themselves I think, “yes! That is how it is! Some else knows how it is!” Thank you people. Keep posting.
Liked by Colleen Young, Connect Director, strokesurvivordynamo, glenstrek
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