Cerebellar Stroke - experience/treatment/recovery

Well done Girlfriend. I am so proud of you.

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?

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!!

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.

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!!

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?

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.