Is a scrambled brain sensation normal ?

[Cornishwaves247]

Hi,

I'm 8 months in from my rebleed and have a very scrambled head sensation. Is this normal to have it this length of time? I'm hoping it will ease away as it's very frustrating... it throws my balance out constantly and I can't change my eye direction! I have to stay focused on one thing.. does anyone else have this? Or had this? Does it go away? It's like my brain is freaking out! I'm guessing it's all to do with signal. Eye signal not entering into the brain correctly. Anyone have any advice on this please..

[RogerCMerriman]

For myself no, and I think in many ways others I’ve spoken to, generally you feel normal, the difference takes a while to notice yourself!

I did have “stars in my eyes” for a while maybe a month or more and with the vertigo felt rather swimming/spinning at times.

I think at this point I’d ask who ever is looking after your medical needs be that GP or hospital?

[Cornishwaves247 in reply to RogerCMerriman]

Thank you for replying 😊 I don't get much after care advice or guidance so rely on everyone's experiences. Which are more valuable.

[cat3]

Jo, the after effects of ABI seem to differ from one person to the next. We all seem to have similar issues, but each to different degrees. My main problem, even after 6 years, is balance and what you describe as scrambled brain, and no one can come up with an explanation or a way to alleviate it.

But I'll keep trying for a solution ; not easy when I only see my neuro-consultant 12 monthly, and he confessed last year to being 'stumped'.

But with your re-bleed being fairly recent, you could contact the designated Practice Nurse from the department/ward where you were treated, as they're there specifically to support patients whilst in hospital and for an indeterminate period afterwards.

I remember ours, and she emphasised that we could contact her when/if ever neccessary. Eyesight issues can be rectified by referral from your GP but better still by the consultant who oversaw your treatment, which the Practice Nurse can organise.

Best wishes Jo.................Cat xx

[Cornishwaves247 in reply to cat3]

Thanks cat3 . Once I was discharged I didn't get any aftercare advice/guidance. I had a team for six weeks to help me at home but no neuro help. I have spoken to my gp about this, who is going to speak to someone else for information. Being in Cornwall don't help matters.. not much help down this way. Where snouts are you located? You are super lovely with your replies. Have you come across anyone with a juddering brain sensation as that is what I'm experiencing today and yesterday actually. Do you think it's coming to an end? This inner sensation x

[cat3 in reply to Cornishwaves247]

I'm in Trafford (S.Manchester/N.Cheshire) Jo. And we're lucky to have great hospitals all around (6 within a radius of 4 miles) but of course the waiting times, both for an appointment and in A&E, are now in turmoil.

The only time I've experienced the juddering sensation was around 25 years ago when I kept asking family if they could hear/feel a heavy goods vehicle nearby, or heavy machinery, as I regularly felt the shaking, especally in quiet moments such as reading or watching TV.

Eventually, realising it was within me , I sought psychiatric advice and was told it was a neurological condition, caused most likely by the shock of my mother's sudden death. And I must say, since taking a daily SSRI, that symptom (amongst others) has never returned.

So you might consider an anxiety angle for these symptoms ; it can be a bit of a wild goose chase, and even a combination of issues.

Contacting the Practice Nurse at the hospital where you were treated is usually a short-cut back to the neuro team where you'd probably be tested for neuro and optical issues.

All best wishes Jo, Love Cat xx

[Cornishwaves247 in reply to cat3]

Thank you cat. I don't feel like it's a heavy vehicle passing though or machinery vibrations. It's like the brain is moving backwards and forwards but in a juddery fashion. My body feels like it too sometimes. It's not a smooth sway.. it's frustrating and I just hope it's a sensation to the sway slowing down to eventually stop and I finally have a still body again. Oh I hope this happens. It really takes my strength constantly moving. Thank you again cat3

[Kavib]

I’m 3 years on after a Suburachnoid Haemorrhage and still experience this. However they are not as frequent as before so it does reduce. I have also learnt how to manage it by taking time out whenever it happens. Usually going outside and getting some fresh air or whilst at work I go for a walk outside the building and this works for me. Otherwise just have a short rest, it’s your brains way of telling you that it is overworked.

I have done short YouTube videos to help others going through similar issues hope you have time to watch :

youtu.be/7V5ESdgSnrU(Not working as expected?)

[Cornishwaves247 in reply to Kavib]

Thank you for your reply

[Cornishwaves247 in reply to Kavib]

Mine isa intracerebral bleed I think. It's within the cerebellum

[Barnspops in reply to Kavib]

Your video is very brave an also inspiring. Well done it helped me a bit. As I still feel awful nearly four months after my shunt being fitted. So thank you.

[Woo777]

Hi , I’m one year on and it does get better , I think a lot is in our minds (bad joke ) but the hospital told me a year and when that day passed I made a miraculous recovery . I did return to work tho so it took my mind off it . Good luck xx

[Cornishwaves247 in reply to Woo777]

Thank you for your reply. I hope this happens to me 😊