The good and bad days of cerebellar stoke

Greetings again,

I have just been to see my consultant, he's a nice chap, easy to talk to and very affable. We are still very much on the case of determining the cause of my stroke. I had a good look at my MRI scan which was interesting to see the timeline of the minor strokes and then major stroke. I felt a bit sorry for my brain at that stage. I haven't been confirmed for a bubble echo yet and am very keen to get this done. 

My consultant told me that the information practioners get regarding cerebellar stroke are very much "classic casebook studies" and he has found that in reality, things are quite different. Yesterday, I was not so bad. I managed to hobble in and out of hospital, cook dinner for my family and slept okay (apart from a terrible feeling having woken several hours after going to bed which found me craddling myself back to sleep). 

Today, I have been "off" all day. My head has been "off-kilter" all day. Apart from some small respite when resting but as soon as I got up, I didn't feel steady at all. Today has almost felt like a few days after my stroke. It is now fourty-two days after my stroke. If I rub or scratch my head it makes me feel "funny", this is usually how it feels but today it has been more pronounced. I haven't been able to focus well when moving. Even sitting has me swaying in my brain. 

What I would like to ask, is whether these kind of extremes are experienced by other people? Some days, I feel good. I get up, do things in a psuedo-normal way and feel cheerful because of it. Then, a day like today comes and I can't do anything it seems. It becomes a day of mostly tussling with the merest physical and mental shifts from hour to hour. I don't have a headache but my mind is sort of pulsing. I haven't landed on an even keel and was wondering if others have experienced such polar opposite days. 

Just to let you know, you are not the only one. I think I have replied to you before.......I am a year on from my stroke

Sorry, my last post got sent before I had finished!!!! Co- ordination gone!!!!

I am a year on from my stroke (cerebella) and am still experiencing the same as you. Can have a couple of good days, then bang could end up in bed for days. On my good days it is brilliant and I keep thinking this is it, it has all gone now, only for the "gremlin" to attack again. I am learning to live with it, but sometimes think, why should we? But there seems to be no help out there. I feel as well my family are all getting fed up with it, It's difficult to explain to them how I feel.......and I keep getting, "well it is over a year now, you should be better" sorry, didn,t mean to moan, but just wanted you to know, you really are not on your own with these problems. I think there are a lot of us out there that are still suffering.

Best wishes and take care. Jane.

It's an awful feeling and one made worse by the yo-yo effect. It's a shame there isn't widely accessible information on cerebellar stroke symptoms that aren't related to movement. I've had those "it's gone now moments" as well, I bask in them at the time, but the sinking feeling of returning to my symptoms is not pleasant. I don't want my symptoms to subsist long-term but I know I have to be realistic. On the family front, I had one family member say to me, "It's been three weeks now and I don't see any difference"! I said to them, it's not like I've broken my toe. 

Wonderful response to family member........must remember that one!! If ever I find the answer I will let you know. Jane.

So your family member can look inside your  brain? They could hire themselves out as a replacement mri.

Hi Janet,

Yes, indeed, that would be quite useful. Unfortunately, by the time I've begun explaining how it feels to others ... post-stroke fatigue sets in!

Quality comment!!  Laugh out loud!!!