Cerebellar Stroke - experience/treatment/recovery

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.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

@hammondm99

Just curious, anyone dealing with "brain flooding" here, at least I am assuming that is what I am dealing with? I used to get a little out of sorts shortly after my cerebellar infarct when grocery shopping, too much going on around me with all of the people, stocked shelves, noise and so on, felt a little light headed and anxious. Shopping has gotten much better over the past 11 moths since my episode, but I still get like that when walking through the machine room at work. There are big machines here, different smells, lots of noise, moving parts, steam, aisles to walk in, etc. I get a little light headed and a little anxious, not too bad, but I do feel out of sorts and can't wait to get to an office area or my office. The feeling subsides fairly quickly, just curious if anyone else experiences this and if you were able to return to normal.

Jump to this post

It is very difficult for me to visit a big mall. I can barely make it through without feeling dizzy, getting tinnitus, feeling like my head is twice as big, vision difficulties, etc.Even in smaller grocery stores, although if I get to know a store with all of its attributes I can handle it much better. Social events with a lot going on, many people talking at once makes me dizzy and all of the above. I often feel lurchy and off balance and feel sickly in stores, church, other buildings. It has been three and a half years since the accident and the TBI and it all still is with me.

REPLY
@lakelifelady

It is very difficult for me to visit a big mall. I can barely make it through without feeling dizzy, getting tinnitus, feeling like my head is twice as big, vision difficulties, etc.Even in smaller grocery stores, although if I get to know a store with all of its attributes I can handle it much better. Social events with a lot going on, many people talking at once makes me dizzy and all of the above. I often feel lurchy and off balance and feel sickly in stores, church, other buildings. It has been three and a half years since the accident and the TBI and it all still is with me.

Jump to this post

Fortunately, it does not bother me in concert halls an other social events. Just seems like stores and the machine room at work get to me. Thanks for the feedback!

REPLY
@rachelanne

Dear @hammond99,
I suffered a Hemorrhagic Stroke on 05/04/01, and I absolutely suffer from excessive noise, strange smells, and am confused every time I go shopping, even when it's the exact same Grocery Store! I also have difficulty being in crowds! I find it very overwhelming and overstimulating, even 17 years after my Stroke! I haven't been able to work since my Stroke; as I was diagnosed with Epilepsy, 2 years post-stroke! I still feel these things, but it also depends on the person!

Jump to this post

I feel fortunate that it does not bother me to that extent. The brain does some amazing things, most people don't realize it until something like this happens. Thanks for the reply!

REPLY

Wow! This has been a HUGE help for me. I am a 36 year old male and had a Cerebellar Stroke this last weekend. I was sitting at my desk at work when all of a sudden I felt extremely dizzy... 2 years ago I suffered a Cerebral stroke. Which fit the typical F.A.C.E. test. This one was very different so I didn't think it was a stroke. So back to my desk. I tried to stand up and fell and hit the wall. I sat back down. I could barely move my arms and legs, my muscles weren't working. So I started scooting my rolling chair with what little strength they had in my legs out of my office to find somebody to tell them something was wrong. My mind was perfectly clear and my speech wasn't impaired. My eyes were going in circles and figure eight shapes and I couldn't control it. I found somebody and they called nine-one-one. I started vomiting uncontrollably. This lasted for the next 6 hours. I was taken by ambulance to the hospital where they ran a bunch of tests. They admitted me and an MRI and found that I actually had a Cerebellar Stroke. I'm currently on coumadin, two years ago after my first stroke I had to have open heart surgery and now have a mechanical mitral valve. The reason for the Coumadin. Today on my way home from work I stopped at the grocery store. Walking around the store I felt extremely dizzy like I was going to pass out or puke. I went and sat in my car with my phone ready to call nine-one-one thinking it was another stroke. It comes and goes in waves. From what I have been reading on here that seems normal? What other side effects have people experienced? Just so I know what to look out for.

REPLY
@optymus13

Wow! This has been a HUGE help for me. I am a 36 year old male and had a Cerebellar Stroke this last weekend. I was sitting at my desk at work when all of a sudden I felt extremely dizzy... 2 years ago I suffered a Cerebral stroke. Which fit the typical F.A.C.E. test. This one was very different so I didn't think it was a stroke. So back to my desk. I tried to stand up and fell and hit the wall. I sat back down. I could barely move my arms and legs, my muscles weren't working. So I started scooting my rolling chair with what little strength they had in my legs out of my office to find somebody to tell them something was wrong. My mind was perfectly clear and my speech wasn't impaired. My eyes were going in circles and figure eight shapes and I couldn't control it. I found somebody and they called nine-one-one. I started vomiting uncontrollably. This lasted for the next 6 hours. I was taken by ambulance to the hospital where they ran a bunch of tests. They admitted me and an MRI and found that I actually had a Cerebellar Stroke. I'm currently on coumadin, two years ago after my first stroke I had to have open heart surgery and now have a mechanical mitral valve. The reason for the Coumadin. Today on my way home from work I stopped at the grocery store. Walking around the store I felt extremely dizzy like I was going to pass out or puke. I went and sat in my car with my phone ready to call nine-one-one thinking it was another stroke. It comes and goes in waves. From what I have been reading on here that seems normal? What other side effects have people experienced? Just so I know what to look out for.

Jump to this post

Hello @optymus13 and welcome to Mayo Connect.

Thank you for sharing your story about cerebral strokes. Each. person's experience can be so different.

I am glad that you have found some help here on Connect. I am also surprised by the many after effects that stroke victims have. I encourage you to keep reading and posting, there is a lot to learn on Connect.

If you care to share more, I'm just wondering, do you have any speech or mobility problems as a result of your strokes?

REPLY
@hammondm99

Fortunately, it does not bother me in concert halls an other social events. Just seems like stores and the machine room at work get to me. Thanks for the feedback!

Jump to this post

It could possibly be the lighting in those large stores and places of work. I can't stand going into places like Walmart, hospitals and etc. I feel kind of light headed to some degree. I always figured it was stray voltage given off by the lights. I do some dowsing work in that area and I hate to say it but, it seems the stroke I had makes me more sensitive to that type of thing. Sounds crazy, I know!
A few other thing I still notice after 7 years (my stroke in 2011), is how I feel going from a well lite room into a dark stairway or hall. The transition again makes me feel slightly light headed and balance is off just a little bit. I always feel like I am tipping to my right side, like I am falling that way, it is ever so slight, but one can notice it!

REPLY
@strokesurvivordynamo

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.

Jump to this post

I suffered with headaches the whole 1 st after my stroke. Fine when eyes were closed and sleeping, but at soon as I opened them in the am, my head would start pounding to some degree, not terrible, but very annoying and bother some. I was driving one day and felt like I had another event coming on, felt dizzy, could not see clearly and the scariest part want when it seemed to be getting dark outside in early afternoon, 2 pm or so.
Kept driving till I got to a clinic I knew of (which turned out to be 10 minutes farther that I thought) and got ck'd out. Again as many have said, Dr's really couldn't tell much because the symptoms subsided by the time I got there. Did EKG and etc. In the end of the visit the doctor suggested I try Propranonal for the headaches (works for blood pressure for some, if needed also). I hate taking pills, but after a week more of headaches, I gave in and tried it. What a difference it made for me!! Within 2 days, most of the headaches subsided, still feel light headed a fair amount, but headaches are much better.
Doctors don't know why Propranonal works for headaches, just know that it helps. Also will calm nerves just a tiny bite.
Hope this helps. Kept the faith!!

REPLY
@hopeful33250

Hello @optymus13 and welcome to Mayo Connect.

Thank you for sharing your story about cerebral strokes. Each. person's experience can be so different.

I am glad that you have found some help here on Connect. I am also surprised by the many after effects that stroke victims have. I encourage you to keep reading and posting, there is a lot to learn on Connect.

If you care to share more, I'm just wondering, do you have any speech or mobility problems as a result of your strokes?

Jump to this post

No actually! Which is a big blessing. Both strokes I was back to normal the next day, besides this head ache and dizziness

REPLY
@thinkitseeitdoit

Has a anybody talked about depression, i know i had to get some help from my doctor to get over mine. I also have just come to realize as my 1 year approaches its harder and harder to stay excited and if i let it get me down it will. Im aware of it, i won't hesitate seeing my doctor if i need to. Its hard enough to recover from this stroke i don't want to fight depression.

Jump to this post

Sad part is, I am not sure how many of us know what depression really is or if we suffer from it. I grew up on a farm and we worked very hard all the time. Even if we got hurt or felt really sick, we worked through it no matter what, because the cows and our families relied on us to get it done. I tend to think I am just feeling sorry for myself at times and always try to remember how lucky I am compared to many others, here with Strokes or others with terrible cancers and etc.
I totally agree, Depression in itself can make people feel sicker than they should. The real question is then: How does the average person know if he or she truly has depression?? Ones state of mind can actually make depression worse, correct? The people and work environment we are all in, can even make a fair amount of difference also. In how fast one gets better, maybe?
All said and done, we have to try to be positive, for ourselves and for others! Sometimes helping others is what makes one feel better and gives purpose.

REPLY
@optymus13

Wow! This has been a HUGE help for me. I am a 36 year old male and had a Cerebellar Stroke this last weekend. I was sitting at my desk at work when all of a sudden I felt extremely dizzy... 2 years ago I suffered a Cerebral stroke. Which fit the typical F.A.C.E. test. This one was very different so I didn't think it was a stroke. So back to my desk. I tried to stand up and fell and hit the wall. I sat back down. I could barely move my arms and legs, my muscles weren't working. So I started scooting my rolling chair with what little strength they had in my legs out of my office to find somebody to tell them something was wrong. My mind was perfectly clear and my speech wasn't impaired. My eyes were going in circles and figure eight shapes and I couldn't control it. I found somebody and they called nine-one-one. I started vomiting uncontrollably. This lasted for the next 6 hours. I was taken by ambulance to the hospital where they ran a bunch of tests. They admitted me and an MRI and found that I actually had a Cerebellar Stroke. I'm currently on coumadin, two years ago after my first stroke I had to have open heart surgery and now have a mechanical mitral valve. The reason for the Coumadin. Today on my way home from work I stopped at the grocery store. Walking around the store I felt extremely dizzy like I was going to pass out or puke. I went and sat in my car with my phone ready to call nine-one-one thinking it was another stroke. It comes and goes in waves. From what I have been reading on here that seems normal? What other side effects have people experienced? Just so I know what to look out for.

Jump to this post

The symptoms with your Cerebral Stroke sounded very much like mine when I had the stroke. The only significant symptom for me now (10 months since) is my right arm and right leg get a little heavy or tight (for lack of a better term) after a mentally draining week. Sometimes my speech seems a little slurred at the end of the week, but others don't seem to notice. Goes away over the weekend when I have had time to get out of work mode, shut the brain down a little. Sleep does wonders, I try to get 8 hours each night, will sleep 9 hours if my body needs it. I also notice that I have a little stiffness in my right when walking down the stairs first thing when I wake up. Goes away by time to get in the kitchen and I loosen up a little.

REPLY
Please sign in or register to post a reply.