Head still not right

I have got a very strange feeling in my head ever since I had my stroke almost 4 years ago The stroke affected my head and my eyes it left me with double vision and this awful feeling in my head which I cant describe. Nobody comes on to the forum with anything the same. I read all the stories and feel very sorry for everybody who have lost use of their limbs and it makes me feel as though I am alright but I am not I cant twist round and sudden turns make me very unsteady my balance is dreadful. I need somebody with something similar to speak to. Sorry I have gone on but it does affect my life so much. Norma Jean.. My doub le vision has gone now so I hope the head will follow. Best wishes.

Hi, I had my stroke almost four years ago too, and anytime I get a strange feeling in my head, I automatically think oh no not again,  if I was you as yours is constant I'd speak to the doctor who may be able to refer you to stroke specialist.  Good luck.

Hi Norma ,  2 years on / similar problem in unsteady & advise been given ! Use stick to walk , when walking all my brain use is focused on just moving forward , if I even try to look at say a picture , on the wall , somebody speaks to me , put my hand in pocket for hanki , without STOPPING, become giddy & unsteady. Must stop , refocus & turn my body to face , as like you find it painful,  difficult to try & twist my neck . Try to remain positive, but with no real improvement , wonder if this is IT. Good talking David. 


Thanks for your reply David I am pleasedthat somebody has got similar things to me. it does make everyday tasks difficult, my husband has to do most of the work I am very limited to what I can do but I try to do more if I can. I was a very active person before I had my stroke I walked miles did keep fit, yoga. did a lot of dancing. It was a shock when it happened and I get frustrated. But onwards and upwards as they say and I do try to  be positive I used to be a very negative person. We must keep smiling Best wishes and thanks again. Norma.

Thanks for replying Wendy I have been to a stroke specialist numerous times I dont think they know what to do for me. Its a case of you are on your own. Norma.

Always good to talk Norma, you might be interested in some very good you tube videos , BRAIN ATTACK MUSIC .

By ex musician,  cerebellar stroke , 8 years ago , I got some very helpful advise from. Thanks David. 

This may reassure you but I'm in my seventh year of recovery and the instability you mention is still with me but only slightly. In the early days of walking to get my attention diverted would have caused a tumble without doubt. Friends over here have a bad habit of tooting you when they pass in their cars. I have to completely ignore this friendly gesture!

I expect some more improvement but as long as I'm careful all should be well.


Thanks Jane yes it is very difficult to explain to anyone what it feels like. Mine never goes away but some days I feel I can cope with it and other days it causes me anxiety which dosent  help at all. B ut we have no option but to carry on and the doctor is useless doesnt understand at all what it feels like. Thanks again for replying it does help to know that you are going through the same things. Norma 81 yrs. but I dont think I look that old bragging again.

I wil have a look David and thanks very much for the chat. Norma.

Hello Norma,

I get a few odd head sensations, awfully difficult to describe. The easiest is the tightness I feel sometimes, some kind of pressure but unable to work out what sort. I also have vision issues, steropsis, blurriness and some double-vision. Some nights my head just doesn't feel right, kind of like it is buzzing or fuzzing (fizzing?) but not. I don't know if this is a result of tinnitus and fatigue working together. I feel a bit like a blinded dalek sometimes when moving, unless I really knit my brow and concentrate, that often makes me feel better. I had a stroke seven months ago, ischaemic cerebellar. Oddly, sometimes massaging my head lightly or scratching gently offers some relief, I do this at night, perhaps the sensation distracts whatever it is going on inside. I haven't had it checked out yet, but plan to. I know that headaches are very common with stroke survivors, so it could be a kind of headache. 


thanks Rups iit is very hard to descrbe the feeling but I will try rubbing it I will try anything if only I could find something that would get rid of it. It is very disabling the trouble is nobody can see it and they say I look well I wish I was  I cannot remember what feeling normal is  I feel like a robot sometimes especially when we go our afternon walk. i dont go far as walking feels strange. I wonder if I am all there sometimes. Best wishes Norma.

Hi,  I am 4 years post stroke  and still  have days when I feel  very strange, for no apparent reason. My stroke  left me paralysed  on my left side. I walk with a stick  but find that whilst  walking I am unable to look around, it takes so much  energy to concentrate  on putting  one foot in front of the other, that if I want to look at  anything,  I have to  stop. 

I am unable  to go outside  alone. I would  never  trust myself  to cross the road safely, which is very upsetting  to think that I will always  need  to be accompanied. I was a very independent  person before  my stroke and even after 4 years, I still find this nightmare  very difficult  to accept.

I also find that if  I'm in the car and my husband points out something,  my brain  is too slow and we've gone past  by the time  I've realised  what I'm supposed to be  looking at !! Very  frustrating  for both of us.

I am also  unable  to turn  suddenly as this affects  my balance.  

Sorry I can't  be more  positive.

Regards  Sue