Cerebellar Stroke ... in a nutshell

I want to have a little thread here about cerebellar stroke, and everything I have gleaned so far from having had one, and current research into the matter. I hope that my information is accurate or at least in the right ball park. I will edit this thread if anything needs to be amended or added as time goes on. Obviously, this thread may only be of interest to cerebellar stroke survivors.

As we know, every stroke is different because the damage will be dispersed disparately, and our brains all have been shaped according to our own development. However, there will be some commonalities in how the symptoms post-stroke affect us. In the same way that each one of us will respond subjectively to being struck by a bramble, depending on many variable factors concerning the bramble strike, but the wound will most likely still be the same.

The cerebellum houses 80% of the brain pan’s neurones, when we have a stroke, professionals deems that we lose 1.9 million neurones a minute. The cerebellum is referred to as the “little brain”. A cerebellar stroke is rare, accounting for 2-3% of all strokes, but it also has nearly twice the mortality and morbidity rate compared to a regular cerebrum stroke. We are very lucky to be alive. Post-cerebellar stroke is so little understood that it has a name all to itself, “cerebellar stroke syndrome”. In my view, the cerebellum is a sort of survival filter for the cerebrum, it makes sure we don’t knock things over, or say the wrong thing, or get ahead of ourselves. Excuse the pun. I have heard many medical professionals say that if you could choose your stroke, a cerebellar stroke would be the one to choose. I disagree.

The cerebellum remains an under-explored part of the “entire brain”. It has always had the reputation as the motor-function part of the network, but recently it has been discovered that it also manages some language and emotional functions little understood. It is the survival mechanism to the higher part of our cerebral system. That means it operates most of our primitive functions, but over time has adopted some more complex functions as well.

If you have a cerebellar stroke, the main problem is going to be the cerebrum-to-cerebellar communication loop. The big brain is working fine, but when it sends a message down to the damaged cerebellum, the message gets scrambled, and what gets passed on to the vestibular and central nervous system is lost in translation. This also relates to the oculomotor reflex function, so even if your occipital lobe is trying to see something for what it is, the cerebellum can’t quite pass that information on to the eyes. In turn, there may also be oculomotor reflex dysfunction because of this disruption to the cerebral-cerebellum loop. This equates to our cognitive visual-spatial awareness. It’s a precision function that when disrupted causes giddiness, blurriness, double-vision, nystagmus, stereopsis, and a whole host of other distortions that make just looking around, taxing on the old grey matter.

Another large concern will be the body’s vestibular system, which is the internal balancing function that keeps us steady. This disruption is part of the vestibular-oculomotor function that attempts to place us where we should be in a physical space. It is difficult to use physiotherapy in order to rectify this because every positioning of the body and every surrounding environment is always going to be slightly different, this adds more stimulus to the brain and more calculations need to be managed in order to function in a calibrated way. If I walk out into my garden, and walk across the grass twenty-times, each of those times are going to be different. It may be the same walk but the lighting will change, my thoughts will change, my movement will change, the wind will change, movement outside will change, my focus will change … all of this is a new challenge for the brain despite it being the same walk.

Another cognitive disablement of cerebellar stroke may be the working memory. Memory we use to function everyday. Survival memory. It’s more than just walking into a room and wondering why you went in there. This affects many people, and shouldn’t be attributed to stroke. Working memory is retaining information short-term. It’s tabla rasa, not just getting distracted, as we all do, even with an undamaged brain. This, I am to suspect, is why multi-tasking is difficult but it is also key to exercising that memory function. Exercising the memory with sequences is a good way to encourage the brain to be able to multi-task again without straining itself.

Language. cerebellar stroke can affect language use. Particularly the parsing of sentences, the syntax if you like. recent research has narrowed aspects of it down to agrammatism, which is using incorrect inflections in a sentence. I suffered from this acutely during the first year of the stroke. I would use the wrong tense frequently, and have to go back and correct my sentences. Now, I seem to muddle up"on/in" a lot. I do this in speech and in writing. Fortunately, care for solecism is less these days, so I notice others doing it more than me.

Emotions. Cerebellar stroke can lead to blunted emotional response, inappropriate behaviour and disinhibition. All the things we ought not to do if we want to survive. Once again, a survival mechanism that has been cross-wired, making for social responsibility challenging. I have a reduced impulse control and disinhibition of saying what I think. It has led me into some murky waters, but those closest to me are aware of this. I have actually had to turn on my inner monologue and tell myself not to say something lest it be taken the wrong way.

A little bit to start physio. Physio with cerebellar stroke is difficult. It’s important, I think, to always exercise in a controlled environment, as well as going out and doing everyday things. The reason for this is because the brain uses preconceived experience to function using the least amount of energy so that it can save its reserves for the unexpected. If we just carried on with life as usual, our damaged brain doesn’t have the facility to rely on these preconceived experiences because that function has been disrupted. So, the brain will be firing on all cylinders, and thus we get fatigued, but also it can’t implement repair effectively. So, a controlled environment allows the brain to achieve what it needs to achieve without being strained. Then, we can go out an it will be better prepared for the everyday. Conceivably, cerebellar stroke symptoms can repair through everyday life, but it may take longer and be more exhausting than if balanced with contained exercises.


@Rups thank you for creating this page for us all to read. It is interesting to read I had a cerebellar lacuna infarct at the back of my head my outward signs look normal and I get very frustrated and emotional as I’m just not ok. Thank you I look forward to you adding more information have a nice weekend Loraine :blush:


Thank you Rups, very informative. I too have had the cerebellar stroke and it all rings very true. Thank you for posting it, hope you manage to rest now.
Best wishes, Jane.


Thanks for this post @Rups, my first stroke was a cerebellar which unfortunately at the time was put down by my then Dr as being "labyrinthistis " so I struggled through it with my Husband ,who was diagnosed at a time around the same as having stage 4 cancer, it wasn’t until after I lost my Husband and had my second stroke that the MRI showed it up. I’m struggling with pain in my legs at the moment but also emotionally, which mixed with bereavement is the hardest part, but I try to stay as positive as I can and rest when I have to, everyday is a struggle but with the help of family and sites like this one I try to look forward. I look forward to reading more of your post.


@Shaz59 I’m so sorry for your loss and your 2 strokes. Sometimes Doctors just don’t get it at all which makes me cross :rage: I will keep you in my prayers. I’m glad you have a supportive family bless you and sending hugs and best wishes Loraine :blush::hugs::pray:


Shwmae @Shaz59, yes, me too. Was misdiagnosed with BPPV (labyrinthitis). I’m sad to hear that your husband passed away from cancer. If you can’t stay positive, stay focussed, but I am glad to hear you are aiming for a positive outlook. We have to soak up all those small joys that tickle our senses and not face the great cognitive challenge every day. I hope you are well. Cofion cynnes.

1 Like

Dim problem @Loshy (Loraine), hopefully, hidden disabilities will, gradually, be part of the wider disability conversation. I look like a man at peace with himself, and yet inside there’s a whirlwind spiralling. I use body language more often now than ever. I find people respond to it, like slapstick before the talkies. :grin:

1 Like

@jane.cobley, how are you Jane? I remember some of your first posts were in an anxious space, how are things now?

Thanks Rups, the anxiety is still there, but am coping with it. Worse time is at night (when stroke bit me!!) I have always suffered from insomnia, so that doesn’t help. But I am learning to live with it. I think it’s because I have an aneurysm as well so that doesn’t help. No help from medical profession either, so nothing new there!! But I am battling on. Thanks for your concern anyway… It means a lot. Best wishes, Jane.

1 Like

Thank you Rups for your very informative article. I had a cerebellar and ischaemic stroke 12 months ago, was in a stroke unit for 2 weeks and rehabilitation for two weeks, now home with husband and old dog. I had no idea about the effects of the cerebellar stroke until now-temper, bad language, balance, fatigue, driving, losing words as I am about to say them, mixing up words, let alone doing most things I used to do. Thank goodness we are retired. Although my left side was affected (I drop everything) I have Hyper-sensitivity in my right side which still hurts but doesn’t let me down. A stroke physio gives me exercises which have definitely helped with walking and given me confidence so will continue,

A week ago I had a second booster with the Moderna vaccine and 8 hours after the vaccine had a raging temperature and my whole body was shaking and freezing cold then I started being violently sick this went on until the middle of the night when I fell asleep but felt dreadful . This has put my stroke recovery back as I am very wobbly but hopefully time and patience (ha! ha!) will help. I don’t know if anyone else has suffered, I did send a report to Yellow Card.

I hope you have an enjoyable May Day weekend in the sunshine.

1 Like

This is interesting. I had a cerebellar stroke in May 2020. I had 11 days in hospital and a further 7 weeks off work. Since we were in lockdown and working from home, returning wasn’t too difficult. However, when I went back to the office in August 2021 I struggled. (I was an accountant by the way.). The interaction with other people was good, and I enjoyed being back in the office. However, tiredness in the afternoon was a real problem, my concentration was poor, and I began making mistakes. This got to the point that at the end of October I retired. I don’t get my state pension until September this year, but with a pension from a previous job we can survive.
I still suffer from balance problems, and having a feeling of “being outside myself”. That’s about as well as i can describe it really. It’s a little like having had one glass of wine too many. Some days are fine, others not so.However, I have pretty much full mobility as long as the ground is level. Slopes can be awkward, but not too bad as long as I don’t look or turn round. If I forget and do this it can be quite fun! If I drop something, I have to be very careful picking it up, as putting my head down is not a good idea. At least it means I can get out of doing the gardening! I can also still drive as my early vision problems have corrected themselves. I try to walk at least 2km each day, and sometimes more.
Afternoon or early evening tiredness still happens, and I usually drop off for about 20 minutes or so. However, during the night I sleep less. I sleep well, but not as long as I used to. I go to bed about 11.15 to 11.30, and usually wake between 5.45 and 6.30. Previously I had to rely on my alarm at 7.00 and would sleep well past this at weekends. When I wake up, I get up. If I don’t and allow myself to drop off or doze for a while, then I feel awful, and invariably have a bad day balance wise.
Overall I have recovered well. I am sad about having to retire, but enjoy my retirement and can still do most things to a degree.
Sorry this was a long post.


Loved reading your post and can resonate with all of it (had he same type of stroke as you.) Know what you mean about feeling like you have had one glass too many!!! I understand about slopes as well, my biggest nightmare was going down on an elevator…won’t be doing that again in a hurry, couldn’t get off, just couldn’t get my bearings!!! You are doing really well and I hope you keep up the good work. Thanks for posting.
Best wishes, Jane.


Very interesting and useful thanks

1 Like

This is exactly the kind of thing I came here looking for as a newby cerebellar I needed to see this confirming it in writing.
I also need to see it this way because half way through reading your post I had to take a break to think, then start from the top again.
I feel less alone than I did when I woke up this morning. X


@GemA aye our @Rups is a writer and keeps us all updated with very useful information. Sometimes I have to stop and re read too. :wink:


Diolch yn fawr, there’s some things I need to update and add to this but the forum has an edit expiry date on posts, but if you search cerebellar on the forum, I’ve tried to post things as they come to light on my recovery journey. :grinning:


Hiya Rups. I found your description so interesting and informative. Definitely a man of words!! I had a cerebellar stroke over 8 years ago now but I still don’t feel I receive the treatment I deserve. Physiotherapy? What’s that?? :rofl: I see a very good Consultant for my eyesight. Thats got him flummoxed!! :joy: He performed something called a Harada Ito Procedure on my right eye (my worst eye) which seemed to work for literally 2 days!! I shall show him what you’ve written. It might give him some ideas as to what next!! As well as having to deal with the things you’ve described, Ive found that due to blood thinners given to me since the stroke I now bruise like a peach!! That may have something to do with being 51 as well though lol!! :joy: Also after my stroke, I completely lost my balance and nowadays I’ve found a walker/rollator is the best way for me to get about. Anyway, thanks again for an informative and interesting read. M.

Information on here has been great. I too had a Cerebellar stroke, I’m at 16 months now. First six months were dreadful, really bad fatigue, and I was so worried I was going to have another one.
I have returned to work after six months and am working full time. I’m getting used to it and I’m not as tired as I used to be.
The next few months I have some hospital appointments hopefully to find out if anything in particular caused it.
16 months for these tests but at least they are happening now :blush:

Bore da @Mandie and @Dolanjo, diolch yn fawr. There is a lot more to be added and some revision I could make, but I think the rudimentary essentials are here. I can’t edit it now because posts on the forum have an edit expiration. Medical researchers surmise that cerebellar damage also affects visual cognition, so not only motor control, but also mental visualisation of cognitive processes. So, organising logical events in the mind can have the same “giddying” disruption as it does when we move or look around. Interestingly enough, I have been exploring my symptoms. I have noticed that the whooshing sensation some cerebellar stroke survivors describe comes from asynchronous body movement and eye movement. If I am walking forward quickly and then slow down, my vision takes a few seconds more to align itself to the reduced speed. This creates an effect not dissimilar to when a camera is dollying forward and the focus puller is adjusting the aperture of the lens at a different speed. When damaged, very finely tuned processes have multiple problems, I suspect one issue is that the compensating visual neurones get fatigued easily, so when it has to change gear, it can’t do it at the same pace as the motor neurones. Anyway, it’s all grist for mill in establishing ways we can retrain these functions to work seamlessly again.

I am soon to write up a post on how our brains process vision and movement, and bracket it with cerebellar injury in the hope that it provides more control over managing our symptoms. I have found that knowing what my brain is doing empowers me when dealing with my disrupted functionality.