After stroke symptoms

I had a mild cerebellum right sided stroke on the 5th Aug age 47 . I've been to the follow up appointment today and saw the consultant who I saw on the stroke ward . He was surprised that I still have issues . He said that I shouldn't be having sensory issues or fatigue as my stroke was so mild . I'm flabbergasted as his words do not tally with the Occupational Health team . I explained that I can't cope in following lots of conversations and being in busy places , I can't multi task without getting bad brain ache . The top of my head feels constricted or tingly and sometimes my toes go numb for no reason .The consultant says he will refer me to a neurologist. Anyone else had a follow up where they are told the symptoms are not to do with the stroke 

Hi, like you I suffered a cerebellar haemorrhage back on New Years Day 2013. Mine was significant, I think, it was in the vermis (midline) extending into the ventricles & left hemisphere. I had no balance or speech early on & coordination difficulties. I had to relearn everything I'd taken for granted since childhood. I had other serious medical conditions too. The whole situation was caused by a long term blood disorder I had/have. In response to your question, in my experience doctors etc are generally guessing/presuming what is going on as the brain is so complex & barely understood. The biggest things for me were fully accepting my new situation as it progressed & learning to be patient letting things be to change...this was against my instincts to push on so it was incredibly difficult.

I like you have the same symptoms, had my stroke 6 weeks ago. And these symptoms are really worrying me. I have had a follow up apt with the neurologist and he says he does not know what are causing all these problems, which is of no help to me!!!! The head problem is exactly as you described, and I know it sounds awful, but I was releived to hear someone else has the same as me, as I get really scared when it happens. Good luck with it all anyway.

 

Hi Jane ,

you really are not alone . Bizarrely the very next day after my post I had a visit from a lovely lady from the Stroke association who confirmed that brain /stroke fatigue is VERY real . My occupational health visitors had also said the same hence my initial confusion after seeing the consultant. Please take comfort that you are not imagining your symptoms. Why does my middle toe go numb when I'm tired ? Why can I not go into a shop and look at things and have a conversation with my husband without feeling my head will explode ? Why can't I read a book ? Why can't I sing in time with a song on the radio ? Why does it feel sometimes when I've had too much stimulation that someone has a tight belt around the top of my head and is pulling hard . I could go on with all my ' new ' normal things that happen . The stroke lady suggested that although these stroke consultant are excellent at diagnosis and looking at scan pictures and prescribing medication they rarely see stroke survivors out of hospital and learning to live . 

Stroke is an overwhelming experience, physically and mentally. The first time I went to a supermarket after my hospital stay, I found it both scary and exhausting. This only eased when an old friend who has been disabled for some years said to me, ‘Remember you have as much right to be there as anyone else.’ Four years on, I still cannot do more than three or four tasks in a day and when I try to multitask I get very stressed. Crowded places are also quite daunting.

today, however, I went to the theatre to see a musical and managed pretty well. It helps to think things through in advance and look up things like disabled access and toilets. I had the tingly feeling, but that does go. I still have a tingly weak hand, but cope with it as part of my ‘new normal’. I get fatigued every day about noon and rest. I also had a good rest before going to the theatre.

Doctors, of course, are medical specialists. We are left to cope with the everyday as best we can. Just hang in there. Things will get better, but not perfect.

Thank you so much for your reply, it is so helpful to know that other people are having the same problems.........kept thinking it was just me. The tight belt around the head was the one thing I kept worrying about, I was so scared everytime i happened, so it is reassuring to know I am not alone. Agree with you about the stroke consultants, mine couldn,t explain my symptoms, as you said they don,t see us after initial follow ups and really have no idea what the after math is.

Really grateful to you for your kind advice and list of symptoms, feel not so scared now, knowing that other people are suffering the same. Thank you.

Hi Jane,

I had a stroke back in March of this year. Again, it was mild like yours, and I got the same tightness around my head feeling, as if a belt was around my head and gradually being tightened. It was always brought on when I’m tired.

My consultant was fab, he kept a close eye on me as I am 43 (42 at the time) and there wasnt any reason why I should have had a stroke. There weren’t any health professionals at all who were surprised by my fatigue symptoms, they just took time to explain what was happening.

Basically, you’re brain is working constantly to rebuild the small pathways that have been damaged, much as a child’s brain is working to gain knowledge and skills. We understand that children need sleep to give their brains time to organise their learning. Our brains need that rest in a similar way, but we (I !!) would carry on for far too long. The funny sensations in your body (I got the tightening and pins and needles in fingers and toes) are your brains way of saying please stop, I need a break. 

They do go away, slowly. I’m now almost 7 months on, I still get fatigue but it’s much more mild, and I stop when my tingles start. My warning signs now are tightness around my eyes (no longer my whole head), I cant get warm, even in a warm/hot environment, and I get mild indigestion. I’m sure in another couple of months this will have changed again. 

In the beginning I would have good hours and bad hours, then good days and bad days, I’m now having good weeks and bad days. It’s slow going but take baby steps and celebrate the tiny improvements each month 

Jane xx

Hi, Thanks, that was a brilliant repy. You have describled exactly what was happening  to me, and I really apreciate the advice. I was trying to battle through it instead of resting when it struck me, as I thought this was the way to go, so your words have been a great source to me. My Neurologist gave me no help or explanation at all, which is why I was so worried, so I am glad your neurologist explained things to you and you have been able to pass it on to me.

I know I must take baby steps, but trouble is I am such an impatient person, but the way I feel now, I know I cannot. It was also so comforting to know that you now get better days and weeks, and I will cherish that thought!!! Once again, thnk you so much for helping me, it feels so lonely sometimes when you are trying to cope with it all. So you have been a great help.

Jane.

Hi, while my stroke happened some time ago, I well remember that feeling of reporting certain recurring symptoms which 'couldn't be related to the stroke', even though they were entirely new to me.  While not the same as those you report, I still have those symptoms when I am overtired nine and a half years on, even though the recovery is excellent.  I suppose we have to remember that every stroke is different and therefore affects different parts of the brain.  Consequently, the after effects must differ accordingly.  Learning coping strategies is important for me; not overdoing things, and subsequently becoming too tired would be the greatest help in avoiding these symptoms.  Be hugely thankful for what you can do and enjoy doing those things.  It is relatively early days for you yet, so progress will continue.  Pursue all appointments for possible answers and relax some more each time something is ruled out.  Very best wishes; onwards and upwards!