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 group.

@brightwings

Well done Girlfriend. I am so proud of you.

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I know it’s kind of crazy to “report” what would seem insignificant to a lot of folks but to me it was like a hot air balloon ride! I felt now “free”! I praise God for services available like pickup for groceries! I left my review and explained it to them how important it is to people who are unable to do shopping! Baby steps!!

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@ajweb93

I am 44. My blood pressure and cholesterol have always been good. Honestly very healthy. I had a cerebellar stroke August 30, 2019. My neck had been extremely sore and tight the week before. That day I didn't feel exactly normal, but not anything too out of the normal. Things didn't taste the same as the normally did. I walked outside with my husband and all of a sudden, I had extreme vertigo. Luckily he was near me and slowed my fall when I collapsed to the ground. I couldn't walk, he helped me in. I was so dizzy which then lead to constant vomiting and I sweat was rolling off of me like crazy. I finally said I needed to go to the ER the following afternoon. The swelling was so extreme the hospital staff was amazed that I wasn't in a coma. They think that the clot reached my brain by a PFO. I go to the cardiologist tomorrow to see if that needs correcting. I'm very nervous to have it closed and nervous not to. I'm so blessed in the fact that I don't have any physical problems that are noticeable to the public. But I have odd side effects. Some vertigo, very tired. Shopping makes me feel crazy weird. And it's hard to deal with people expecting me to be back 100% because I look normal. My anxiety is over the top. Now I have panic attacks and honestly don't want to leave the house. Have you experienced these same issues?

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My stroke was August 26 of this year and I was hospitalized for 2 weeks. Everything you’re describing sounds familiar w/ the exception of cause. Mine came on with 2 first-ever seizures (one a 20 minute grand mal) and Vertebral Arterial Dissection. So, Neurologist said it was “spontaneous” … and no direct cause can actually be confirmed. I definitely have some cognitive impairment as well physical. I “appear” as a “normal” person but I feel different. I get flustered and confused when too much is coming at me. And I cry – I wasn’t much of a crier before, but happy tears too! It’s bizarre. I’m not as sharp as I used to be and I find the constant tinnitus-like buzzing irritating, but when it becomes loud I know it’s a sign to rest. So many other little issues which add up, like pins and needles and loss of blood flow (Reynauds). Still, I’m glad I can walk and talk and live a life. Not sure what kind of life as of yet, but life, at any rate.

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Hi all, happy to find this site.

Got cerebral stroke march-19 with three blodclots caused by a dissection in neck artery. It hit like lightning, Heavy vertigo and started to vomit in seconds. It felt like someone was pushing me really hard to the floor and couldnt move.
I am 39, In hospital they thought it was crystal sickness in the ear. I forgot everything, total blank, couldnt remember the names of my kids, the only thing i could remember was the name of my wife so I was holding on to that one! Did an MRI, was in hospital for two weeks, then rehab for two weeks before going home to my family. Felt like a million bucks at that time being home with my family. Started to work 50%. I july-19 i got a regression, got dizzy, nausea and thought it was another stroke and had multiple panic attacks for the first time in my life. Got to the hospital for a MRI. Was told that my artery was healed and no stroke. They called it post-stroke symptoms and that it was quite common. About two weeks later I was back on track, feeling good again. All felt good and started going to the gym, went to social events, dinners etc.

In november-19 during a lunch meeting I got very dizzy, couldnt stand up and a friend drove me home. Im eating thrombyl acetylsalicylic acid daily as anticoagulant so the risk for another stroke is at minimum (I guess). Anyone else eating anticoagulant, felt any sideeffects?

Got ok after a week but since then I have not recovered. I feel dizzy every day with ”small lightning attacks” i have brain cloud, i cant go to stores or any social events bc of brain flooding. It feels I have regressed 7-8 months. Im afraid this will never end. My dizziness is not rotational but sea dizzyness. Like im on a raft on a very slowly moving river. Its there when I go to bed, its there when I wake up, its there when I write this. Im starting to get depressed, its not getting better, its not getting worse, its just there all the time. One factor is that i live up north with almost no sunlight during winter, could that be a cause not feeling better?

Anyone else experienced this kind of big regression? will it ever get better?

I find it helpful walking in the forrest. Putting away the cellphone, meditate.

Im thinking about qigong or tai shi, anyone with experience?

My stroke affected my balance, sight, fine-motorics in my left hand. The sight i dont care about, the left hand is getting better playing piano so would recommend starting playing an instrument. For pushing and challange the brain fatigue and hand motorics i started building lego with my 7 yr old son. Thats was a smash hit i can tell you and great tool for rehab for me.

Other effects i noticed but was outside my direct stroke damage:
I get this warm rush through the body and then getting cold (apparently I now know the feeling of pregnancy 🙂 I kind of lost my sense of heat on my left hand (had some boiling water on it and didnt feel it much), but that sense has come back. I lost some vocabulary and have trouble bringing forward the word from the brain, ie tulip or lavendel but once I find the word it doesnt get lost again so thats fine. My math is not as good as it used to be but is improving really really slowly.

Maybe its obvious but i stay away from alcohol, last year I had a glas of wine at dinner sometimes but i believe that really counteract the rehab process so stopped all completely.
I started drinking Tea and turned it into a hobby, very relaxing so recommend that. Stopped with coffee and anything with caffeine since its not doing any good for my brain and my progress. Eating more fruits and vegetables and felt a big difference in healing process.

Sorry for the long writing and spelling.
I wish you all the best and a healthier future, all you guys are awesome!!

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I wanted to give an update on my recovery. My stroke occurred June 7, 2017. My recovery has been great. I still have slight dizzy spells if I move certain ways. The Neurologist said that was probably due to the restricted blood flow to the cerebellum and would not go away. It is very minor. Stairs still give me pause. I just make sure I pay attention when going up or down and use hand rails.

Last Friday evening I was feeling great. When I started to go up stairs as soon as I took the first step up it felt like I was standing still and the house moved around me. It was extremely weird and nothing like I have ever felt. Each step was the same. I had to hold on to the handrail with both hands and take it one step at a time to make it up. After I made it up I sat down and had a drink and it went away. The rest of the evening and the next day I was fine. However, as evening came we were going to dinner with friends. I stood up form the chair and it was back. Stairs were the same. I had to hold on with both hands and take them one at a time. It wasn't like the room was spinning. It was like being in an earthquake.

My husband took me to the emergency room and they admitted me. Frankly I was embarrassed to go there. The symptoms eased up while in the ER until they were gone. I felt it was probably just sinuses. They all told us we were absolutely correct in coming in to be checked. I was put on the telemetry unit and had a battery of tests, a cat scan, an Echo Cardiogram, EEG, BARP, two MRI's and and MR/A.

It was vertigo, probably caused by a crystal attaching to a hair in my inner ear. However, what I was on cloud nine about, was the scans were compared to my previous scans and nothing had changed. My heart was great and there had been no other issues with my cerebellar, or any other part of my brain.

All of the doctors, and medical staff assured us that it was the correct call to come to the ER when this occurred. They also said in the future should I have another event like this, I should go to the ER immediately to get it checked. As one pointed out, I have multiple sinuses but only one brain.

So anyway, that was the excitement last weekend. I just thought I would pass on my experiences.

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@incognito

Hi all, happy to find this site.

Got cerebral stroke march-19 with three blodclots caused by a dissection in neck artery. It hit like lightning, Heavy vertigo and started to vomit in seconds. It felt like someone was pushing me really hard to the floor and couldnt move.
I am 39, In hospital they thought it was crystal sickness in the ear. I forgot everything, total blank, couldnt remember the names of my kids, the only thing i could remember was the name of my wife so I was holding on to that one! Did an MRI, was in hospital for two weeks, then rehab for two weeks before going home to my family. Felt like a million bucks at that time being home with my family. Started to work 50%. I july-19 i got a regression, got dizzy, nausea and thought it was another stroke and had multiple panic attacks for the first time in my life. Got to the hospital for a MRI. Was told that my artery was healed and no stroke. They called it post-stroke symptoms and that it was quite common. About two weeks later I was back on track, feeling good again. All felt good and started going to the gym, went to social events, dinners etc.

In november-19 during a lunch meeting I got very dizzy, couldnt stand up and a friend drove me home. Im eating thrombyl acetylsalicylic acid daily as anticoagulant so the risk for another stroke is at minimum (I guess). Anyone else eating anticoagulant, felt any sideeffects?

Got ok after a week but since then I have not recovered. I feel dizzy every day with ”small lightning attacks” i have brain cloud, i cant go to stores or any social events bc of brain flooding. It feels I have regressed 7-8 months. Im afraid this will never end. My dizziness is not rotational but sea dizzyness. Like im on a raft on a very slowly moving river. Its there when I go to bed, its there when I wake up, its there when I write this. Im starting to get depressed, its not getting better, its not getting worse, its just there all the time. One factor is that i live up north with almost no sunlight during winter, could that be a cause not feeling better?

Anyone else experienced this kind of big regression? will it ever get better?

I find it helpful walking in the forrest. Putting away the cellphone, meditate.

Im thinking about qigong or tai shi, anyone with experience?

My stroke affected my balance, sight, fine-motorics in my left hand. The sight i dont care about, the left hand is getting better playing piano so would recommend starting playing an instrument. For pushing and challange the brain fatigue and hand motorics i started building lego with my 7 yr old son. Thats was a smash hit i can tell you and great tool for rehab for me.

Other effects i noticed but was outside my direct stroke damage:
I get this warm rush through the body and then getting cold (apparently I now know the feeling of pregnancy 🙂 I kind of lost my sense of heat on my left hand (had some boiling water on it and didnt feel it much), but that sense has come back. I lost some vocabulary and have trouble bringing forward the word from the brain, ie tulip or lavendel but once I find the word it doesnt get lost again so thats fine. My math is not as good as it used to be but is improving really really slowly.

Maybe its obvious but i stay away from alcohol, last year I had a glas of wine at dinner sometimes but i believe that really counteract the rehab process so stopped all completely.
I started drinking Tea and turned it into a hobby, very relaxing so recommend that. Stopped with coffee and anything with caffeine since its not doing any good for my brain and my progress. Eating more fruits and vegetables and felt a big difference in healing process.

Sorry for the long writing and spelling.
I wish you all the best and a healthier future, all you guys are awesome!!

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In May of 2015 I was in a catastrophic car accident. TBI, broken neck, 6 ribs, lung injuries, multiple fractures down back and my right ankle. After months of wearing neck and back braces, many therapies, ertc. northing much got better with my post concussive persistent postural and perceptual dizziness. For five years I have been dizzy every day with periodic relief. I walk every day even though it feels like I have a bobblehead and I feel lurchy. I ride a stationary bike, do water colors, sing in choirs and play the flute and piano. Bending over to pick up something causes a rush of dizzy as does moving about too quickly. I feel an intense pressure in my head and neck when I move around using my arms and eyes. Brain scan showed no changes. Neck blood vessels appear OK.
I would love to find treatment from anywhere. I fight depression but just keep going.

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Hi @strokesurvivordynamo, for some reason I didn’t receive your chat about your cerebellar stroke. I am very sorry for all you are going through. I can certainly relate because I also had a brain aneurysm effecting my cerebellum. As with you, I did not get any health warnings, nothing out of the ordinary; however, I do believe due to being healthy I survived. I was told by my neurosurgeon that the cerebellum is the part of the brain that gets effected from drinking alcohol so my symptoms are the same, nausea, vomiting, fall risk, and low vision. My disability is all physical. Luckily I have no cognitive deficits. I am in my late 50s. It has been over 3 years now that I have been dealing with the recovery. It has been a slow process but I feel I am on my own learning through trial and error because my medical staff has no answers. Like you have said, cerebellar strokes are not very common and to have survivors is even more uncommon making it difficult to get answers. What have you tried, any physical therapy? I have improved over the years where now I can walk with a cane. At start I was in a wheel chair. I still have difficulty with walking on any uneven surfaces like the lawn. I am planning for more physical therapy to walk outdoors around my house, basically the lawn so my brain will learn. That is my next challenge to overcome. Let me know how you are progressing. I know it is not easy but being consistent helps. My condition with motion sickness stops me from many activities but I still push myself to do a few things no matter how difficult they become.

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@avmcbellar

Hi @strokesurvivordynamo, for some reason I didn’t receive your chat about your cerebellar stroke. I am very sorry for all you are going through. I can certainly relate because I also had a brain aneurysm effecting my cerebellum. As with you, I did not get any health warnings, nothing out of the ordinary; however, I do believe due to being healthy I survived. I was told by my neurosurgeon that the cerebellum is the part of the brain that gets effected from drinking alcohol so my symptoms are the same, nausea, vomiting, fall risk, and low vision. My disability is all physical. Luckily I have no cognitive deficits. I am in my late 50s. It has been over 3 years now that I have been dealing with the recovery. It has been a slow process but I feel I am on my own learning through trial and error because my medical staff has no answers. Like you have said, cerebellar strokes are not very common and to have survivors is even more uncommon making it difficult to get answers. What have you tried, any physical therapy? I have improved over the years where now I can walk with a cane. At start I was in a wheel chair. I still have difficulty with walking on any uneven surfaces like the lawn. I am planning for more physical therapy to walk outdoors around my house, basically the lawn so my brain will learn. That is my next challenge to overcome. Let me know how you are progressing. I know it is not easy but being consistent helps. My condition with motion sickness stops me from many activities but I still push myself to do a few things no matter how difficult they become.

Jump to this post

Hello @avmcbellar,

I so admire your persistence in your recovery! Your attitude, as well as your activities, have undoubtedly helped you to continue making progress.

What type of exercise do you do when you are not involved in PT?

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@incognito

Hi all, happy to find this site.

Got cerebral stroke march-19 with three blodclots caused by a dissection in neck artery. It hit like lightning, Heavy vertigo and started to vomit in seconds. It felt like someone was pushing me really hard to the floor and couldnt move.
I am 39, In hospital they thought it was crystal sickness in the ear. I forgot everything, total blank, couldnt remember the names of my kids, the only thing i could remember was the name of my wife so I was holding on to that one! Did an MRI, was in hospital for two weeks, then rehab for two weeks before going home to my family. Felt like a million bucks at that time being home with my family. Started to work 50%. I july-19 i got a regression, got dizzy, nausea and thought it was another stroke and had multiple panic attacks for the first time in my life. Got to the hospital for a MRI. Was told that my artery was healed and no stroke. They called it post-stroke symptoms and that it was quite common. About two weeks later I was back on track, feeling good again. All felt good and started going to the gym, went to social events, dinners etc.

In november-19 during a lunch meeting I got very dizzy, couldnt stand up and a friend drove me home. Im eating thrombyl acetylsalicylic acid daily as anticoagulant so the risk for another stroke is at minimum (I guess). Anyone else eating anticoagulant, felt any sideeffects?

Got ok after a week but since then I have not recovered. I feel dizzy every day with ”small lightning attacks” i have brain cloud, i cant go to stores or any social events bc of brain flooding. It feels I have regressed 7-8 months. Im afraid this will never end. My dizziness is not rotational but sea dizzyness. Like im on a raft on a very slowly moving river. Its there when I go to bed, its there when I wake up, its there when I write this. Im starting to get depressed, its not getting better, its not getting worse, its just there all the time. One factor is that i live up north with almost no sunlight during winter, could that be a cause not feeling better?

Anyone else experienced this kind of big regression? will it ever get better?

I find it helpful walking in the forrest. Putting away the cellphone, meditate.

Im thinking about qigong or tai shi, anyone with experience?

My stroke affected my balance, sight, fine-motorics in my left hand. The sight i dont care about, the left hand is getting better playing piano so would recommend starting playing an instrument. For pushing and challange the brain fatigue and hand motorics i started building lego with my 7 yr old son. Thats was a smash hit i can tell you and great tool for rehab for me.

Other effects i noticed but was outside my direct stroke damage:
I get this warm rush through the body and then getting cold (apparently I now know the feeling of pregnancy 🙂 I kind of lost my sense of heat on my left hand (had some boiling water on it and didnt feel it much), but that sense has come back. I lost some vocabulary and have trouble bringing forward the word from the brain, ie tulip or lavendel but once I find the word it doesnt get lost again so thats fine. My math is not as good as it used to be but is improving really really slowly.

Maybe its obvious but i stay away from alcohol, last year I had a glas of wine at dinner sometimes but i believe that really counteract the rehab process so stopped all completely.
I started drinking Tea and turned it into a hobby, very relaxing so recommend that. Stopped with coffee and anything with caffeine since its not doing any good for my brain and my progress. Eating more fruits and vegetables and felt a big difference in healing process.

Sorry for the long writing and spelling.
I wish you all the best and a healthier future, all you guys are awesome!!

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Hello @incognito and welcome to Mayo Connect!

I certainly applaud you for your great attitude and willingness to help yourself. Your dietary changes, meditation, and exercise have undoubtedly been a good thing. Have you been involved in any speech therapy yet? That can be a really helpful part of post-stroke treatment.

I see that your first post was almost a month ago. How are you doing now?

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@hopeful33250

Hello @avmcbellar,

I so admire your persistence in your recovery! Your attitude, as well as your activities, have undoubtedly helped you to continue making progress.

What type of exercise do you do when you are not involved in PT?

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Hi @hopeful33250, thank you for your enthusiasm. I want to do more but for a few minutes a week I follow the sitting down exercises provided by the local PBS channel. It incorporates using the rubber bands for resistance. Its a great alternative for those who can’t stand for most exercises. Plus I do chores around the house to keep busy like cleaning and cooking. I have dogs and house rabbits I take care of too. For my mind I focus on all bills and financial matters including for my elderly mother who is 90 and doesn’t understand english. Through the internet I am able to help her. I set up internet for her for communication which she uses to place calls and keep in touch with everyone. Anything she needs I order and gets delivered to her door. She lives on her own and is doing well with her medical conditions. I am grateful she listens and follows my medical advice.

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@avmcbellar

Hi @hopeful33250, thank you for your enthusiasm. I want to do more but for a few minutes a week I follow the sitting down exercises provided by the local PBS channel. It incorporates using the rubber bands for resistance. Its a great alternative for those who can’t stand for most exercises. Plus I do chores around the house to keep busy like cleaning and cooking. I have dogs and house rabbits I take care of too. For my mind I focus on all bills and financial matters including for my elderly mother who is 90 and doesn’t understand english. Through the internet I am able to help her. I set up internet for her for communication which she uses to place calls and keep in touch with everyone. Anything she needs I order and gets delivered to her door. She lives on her own and is doing well with her medical conditions. I am grateful she listens and follows my medical advice.

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How wonderful, @avmcbellar. Sitting exercises are great, I enjoy them as well. Youtube also has some good chair exercise programs. Tai-Chi is one of my favorites because it helps with balance problems associated with a neurological disorder. Here is a link to the Youtube exercise videos that provide guidance for chair exercises, https://www.youtube.com/results?search_query=chair+exercises+for+seniors.

I look forward to hearing from you again! Will you post as you are able?

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