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

Hi Barbara. I had a the same type of stroke a couple of years ago. I experience similar challenges to this day with my speech when things get mentally tough at work. It never seems to happen outside of work. I don't think my speech challenges get as bad as yours though by the sounds of your post. My job in general requires a lot of problem solving and by Thursday, I am a bit fried and find I have trouble pronouncing certain words. I can get most words out, just a few syllables I struggle with mostly. The more I think about getting the words out when I talk, the worse it seems to get. I don't seem to have these challenges when I am away from the work environment.

BTW, don't feel like your complaining, your in the right place to explain what you are feeling and ask questions!

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Thank you from the bottom of my heart for sharing this. It is so "validating" to know that someone else experiences the similar symptoms. Your descriptions seems a whole lot like my experience. I was just reluctant to reach out because alot of persons have it so much worse than mine. I feel like I would be complaining because there are so many much worse off. My experience has been more in my "thinking" and "cognitive" than the outside obvious injury. I do have a little bit of trouble with my right three fingers on my right hand and my right arm, shoulder, hip and foot, but for the most part, I am ambulatory. I am not going to list everything but I would say that most I deal with balance in a car when riding, I drive to the right because I think my perception is off. I get overstimulated so easy even in menial tasks. If too many things are going on, like tv and telephone call and someone talking, I can't have good perception because my mind is too busy. That's when my speech suffers the most. I can be doing fine in the morning when I wake, and a phone call come in and I answer and immediately my speech will be dysartric. My neurologist says its called "flooding" and I just have no filter/buffer. Forget the grocery store. Too many people. I will stop at that because I feel like I am complaining again. I promise I'm not, it's just things I wonder if someone else deals with. I apologize.

I want to thank you for your positive words and encouragement. That means so much. I appreciate it. I would like to say that I am a very positive person and my "faith" has helped me in so many ways. AND the fact that I just try to "make light" of myself when I do something that seems a little crazy. I try to make fun of myself. The Word says "laughter" is good like a medicine so I focus on laughter. I love to laugh.

Many thanks.
Barbara

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@brightwings

My first stroke....are you wanting another???
I had my only stroke in November ‘18. Dragged my foot to the door after waking from an incredibly bad nightmare. Left arm tight against my chest, drooling.
Some one was knocking on my door and wouldn’t stop. The bug man prevented me from being full on paralyzed. God bless him.
No one would be able to tell I had a stroke today.
I had another mini stroke in March.
I miss my brain cells, the ones that told me where the letters on a keyboard or how to access my memory banks.
I also have multiple sclerosis so these challenges could be from that also.
All in all, I CHOOSE TO LEAD A TRIUMPHANT LIFE.
ATTITUDE IS EVERYTHING.
BRIGHT WINGS

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Hello

My first stroke was July 12, 2017 and then the second was February of 2018, about six months later.

I am healed in Jesus' mighty name. Faith is what you can't see.

I'm sorry if it sounded like I was ungrateful. I am so blessed. He is my everything and I know that one day I will be 110%.

Blessings,
Barbara

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@barbarajean100

Thank you from the bottom of my heart for sharing this. It is so "validating" to know that someone else experiences the similar symptoms. Your descriptions seems a whole lot like my experience. I was just reluctant to reach out because alot of persons have it so much worse than mine. I feel like I would be complaining because there are so many much worse off. My experience has been more in my "thinking" and "cognitive" than the outside obvious injury. I do have a little bit of trouble with my right three fingers on my right hand and my right arm, shoulder, hip and foot, but for the most part, I am ambulatory. I am not going to list everything but I would say that most I deal with balance in a car when riding, I drive to the right because I think my perception is off. I get overstimulated so easy even in menial tasks. If too many things are going on, like tv and telephone call and someone talking, I can't have good perception because my mind is too busy. That's when my speech suffers the most. I can be doing fine in the morning when I wake, and a phone call come in and I answer and immediately my speech will be dysartric. My neurologist says its called "flooding" and I just have no filter/buffer. Forget the grocery store. Too many people. I will stop at that because I feel like I am complaining again. I promise I'm not, it's just things I wonder if someone else deals with. I apologize.

I want to thank you for your positive words and encouragement. That means so much. I appreciate it. I would like to say that I am a very positive person and my "faith" has helped me in so many ways. AND the fact that I just try to "make light" of myself when I do something that seems a little crazy. I try to make fun of myself. The Word says "laughter" is good like a medicine so I focus on laughter. I love to laugh.

Many thanks.
Barbara

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Welcome Barbara. My symptoms resemble your also.
Bright Wings

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@rldawg

@barbarajean100 sorry to hear that you experienced another stroke. Was it also in the cerebellum?

I posted a couple of months ago because my husband suffered a PICA stroke. We are very lucky that it did not affect him much physically. The mental effects are there- and he's going to be seeing a neuropsychologist.

I'd like to ask if any of you made lifestyle changes after your stroke, and if you noticed the differences in your well-being. We want very much to avoid a reoccurence here!

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I am sorry I'm just now responding to your response. I hope all is well with your husband. What I meant was that I had a second episode and it was cerebellar, same area just a deeper event. Left me with quite a bit of anxiety, flooding, word finding issues, speech is worse than before. BUT I am so blessed. I hope all is well. I try to eat better and exercise. I do not work since the second. I just need TIME to heal. I pray all is well.

Barbara

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I used to get the brain flooding bad in places that are very busy, lots of smells, sounds, tight aisles, etc. I used to get real anxious and couldn't wait to get out of wherever I was. It probably took me good year and a half to get over most of that, still have to leave places today that are real busy though, gets to be a bit much.

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@hammondm99

I used to get the brain flooding bad in places that are very busy, lots of smells, sounds, tight aisles, etc. I used to get real anxious and couldn't wait to get out of wherever I was. It probably took me good year and a half to get over most of that, still have to leave places today that are real busy though, gets to be a bit much.

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Hi, @hammondm99 - you said that previously, the "brain flooding" in places that are very busy, tight aisles, lots of smells or sounds, etc., caused you anxiety. What helped that improve for you?

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@lisalucier

Hi, @hammondm99 - you said that previously, the "brain flooding" in places that are very busy, tight aisles, lots of smells or sounds, etc., caused you anxiety. What helped that improve for you?

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I keep exposing myself to the things that I struggle with and everything gets better in time, both the physical challenges and the mental challenges.

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I had a motto I learned to use while I was healing. I would repeat it over and over like a mantra.
I still use it today in times I have no control over.

This Too Shall Pass

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I have balance issues 1 year after a stroke. Being in large crowds, weather changes, are the most significant.I look totally normal , but some days are really bad I get sick to my stomachache. I do balance exercises everyday and I feel therapy is gone as far as it can go. Does anyone felt like this and will time help?

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@lvon

I have balance issues 1 year after a stroke. Being in large crowds, weather changes, are the most significant.I look totally normal , but some days are really bad I get sick to my stomachache. I do balance exercises everyday and I feel therapy is gone as far as it can go. Does anyone felt like this and will time help?

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Hi, @ivon - I moved your post to this existing discussion where you have posted before on cerebellar stroke so that you can connect with others who have similar experiences such as @ian7811 @leslon @hammondm99 @brightwings @barbarajean100. Simply click VIEW & REPLY in your email notification to get to your post. Hoping they can let you know if they have also experienced balance issues a year or so after a stroke and getting nauseous under circumstances like large crowds and weather changes. They may also know about balancing exercises and how they have helped them, along with time.

Here is some Mayo Clinic information about rehabilitation from stroke that may be helpful https://www.mayoclinic.org/diseases-conditions/stroke/in-depth/stroke-rehabilitation/art-20045172

Have you felt the exercises have improved your balance from where it started after your stroke? Did the therapist who assigned you these exercises have any thoughts about whether continuing them over time will help?

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