Lack of awareness to post stroke symptoms

18 months on from my sudden Stroke.. A large clot causing an Ischemic Stroke in my right side cerebellum at the age of 47.. A cerebellar infarct.

Though being determined and positive I am still fighting the daily battle with Stroke fatigue, Headaches, dizziness and short term memory and concentration issues.  

I have fought back from only being able to stay awake for 2 hours to now being able to go 8 or 9 hours before the fatigue bites and that includes me currently challenging myself with up to 4 hours per day of intense laptop spreadsheet working from home..

I was always fit, I used to run 8 miles every other night. I have never smoked, drank little and had no problems with my blood pressure or cholesterol .. Yet I suffered what my MRI scan showed to be a large stroke. My consultant could not emphasis how lucky I have been. My wife cried. After initially losing my speech it returned. Physically apart from a numb right arm and stiff fingers first thing in the morning and pains in my muscles in my right chest, I'm doing well.... My post stroke symptoms are all hidden...  Even though I have been tee total for 18 months Every morning I wake up feeling like I have had a bottle of red wine the night before, without having the pleasure... alcohol would just add to my dizziness and bring on the fatigue sooner...

Friends , family and employers don't seem to understand.. Their lack of awareness seems to lead them to "ask are you better now", like a broken leg has now healed... They don't get that I have a permanent brain injury and that my recovery goes on...    To them I'm the same old Daz, I must be... I look the same, I sound the same...  But I don't feel the same...  They all suddenly have become medical experts by saying ," you look so well, you don't look like you have had a stroke" or "It must have been a warning, a small stroke"...  

It wasn't the real medical expert my consultant has said again how fortunate I am to be a stroke survivor  even luckier not to be physically disabled.. he has seen smaller clots and strokes result in both. But he knows cognitively I have not escaped, I have hidden disabilities ... however he has congratulated me on my positive approach and determination towards recovery and to what's happened.. He says my attitude is quite remarkable...  I am frustrated that they have found no medical reason as to what caused my stroke. So like others I live in a little fear of having another one.

I am still battling to increase my hours at work to 5 hours per day, introduce some driving and ultimately get back to my full time Area sales manager role covering North Wales and the Midlands... Im 48 I cant give up. I have achieved a lot so far and have to set myself targets to improve further...  However there is a fine line in doing well and doing too much on a good day... I manage my fatigue every day but some days come crashing down and hit a wall... on bad days the headaches are painful, like brain freeze from an ice Lolly and I can sleep all day.

Others don't see that though, they just think I'm fine, after all I look fine...   I feel the next advert for Stroke awareness should be about the effects of stroke and post stroke symptoms..    To others I look like a nicely polished sports car on a garage forecourt. What they can't see is that there are major problems with the head gasket...    anyway thank you for listening and good luck with your own personal journeys and own recoveries.  Remember to keep smiling..  best wishes to you all Darren

Darren, Many of us on here will sympathise with you. The after effects of stroke go on and on and I’m afraid they are little understood. I went to a funeral today (not my own fortunately) which was at midday. With all such events, I have to plan in advance, so I ironed my shirt yesterday, sorted my suit out and had half an hour’s rest before going. My walking is okay, with a stick, but my weak arm and hand always feel frozen, especially my left shoulder. No hymn singing, but you do have to stand for a while occasionally and that I find a bit difficult.

At the funeral I met several old colleagues and, yes you’ve guessed it, they told me I not only look well but am doing well. Afterwards, brief chats again, but back home immediately for an hour’s nap due to fatigue. Like you, I don’t feel the same as I did, but I do the best I can in the circumstances I am in. I will never give up trying to improve either.

Yes, it is all swings and roundabouts. One task too many and it’s like being Pole axed. But keep at it.....reach those goals and get back to where you want to be. 

Dear Darren

I could have put my own name on your post as you are going through most of what I am/have been. Where I differ is that I can not possibly work. I do about three hours a month in a voluntary post and thats it.

As a generalization you might be doing too much. Do try to be careful. If your brain wants a rest it is unwise to deny it. I guess I am lucky because if I fight the SF then I do quite literally collapse. So that makes things easier as thats a definite.

Only another SS understands what you are going through. As I will say to those who say how well I look, I tell them they cant see inside my head.

I also compare to someone having a leg amputated. That leg will not re grow. 

Do let us know how your regime progresses. I will be interested to see how your fight against SF compares to my acceptance of SF. I am not at all sure I am right in what I am doing.

But smiling helps. And being positive helps

Best wishes




Thanks Colin,  I've always been one to push myself, and at times your right I need to be a little more patient with my recovery because I do push myself that little bit too far in order to make further progress... after being determined to complete my 4 hours per day target of spreadsheet work last week... I was exhausted on Saturday... Weather wasn't good outside and I had chronic fatigue from early morning.  I lay rested and slept all day in the conservatory, finding the rain drumming on the roof comforting and relaxing. . However I still woke up on Sunday morning with my fatigue going up a notch. I had a severe headache on my left hand side behind my eye... I took paracetamol but it didn't touch it..  I was concerned and Rested but this pain didn't lift  until after 10pm that night... I have improved day by day from Sunday and am now back yo my normal, dizzy , self managing my normal fatigue levels...  It's a long road but I am determined to get back to my old role... thank you for your kind words     Darren

Thank you John, I am still determined to keep improving...  well done to you to, managing your fatigue in order to pay your respects at a funeral real... I've described the process of resting as like charging a mobile phone... Everyone still asks me, are you still tired...   Tired ?  I'd settle for tired... Fatigue is nothing like I have known before...   take care and keep smiling   Darren

Thanks for this post. I’ve been out of touch for a while. I too had a cerebellar infarct aged 46- left side, July last year. Followed by diagnosis in January of Myelofibrosis- my bone marrow is not playing fair and my blood likes to clot. Found the emotional side v tough. But hid it and it came out via severe stroke fatigue. Constantly feel woozy and fear another stoke. I live by what the drs call ‘Watch and wait’ - despite that I’m working full time (badly) and trying to stay positive.   I hope you all had a lovely bank holiday weekend. Jx

Hi Darren

Your post resonates with me, I had a small left sided cerebeller stroke the week before Christmas. They have now discovered it was caused by an irregular heart beat (Afib). Anxiety about what caused it, will it happen again, the medication having possible bleeds as side effects continues. I don't know if the anxiety will ever fully leave but I need to be able to live my life.

I also have the hidden disability, sensory overload which makes supermarket shopping horrendous & the possibility of returning to work in a busy, noisy open plan finance office a long way off.

I too think that the next Stroke advert should highlight cognitive issues. As I've said on previous posts to hear 'you look so well, are you back at work yet?' all from well meaning folk but who haven't a scoobie ( but then before this hit me I didn't either) is very frustrating.

I hope you continue to improve, all the best, Fiona







Hi Darren I too had no warnings, was fairly fit, no high blood pressure, no alcahol or cholesterol.  18 months ago as well.  I think many of us understand.  There is a lack of awareness of post stroke.  I tend to reply to anyone thats says you look well, with a polite yes but I had a brain injury and unfortunately the problems I have been left with are not visible.  I have returned to work after a year off for 5 hours on two days a week.  Funnily enough my surname is Williams as well.  Luckily I have hardly had a headache since, but suffer with the fatigue, memory loss etc.. as many of us do.   I posted in the discussions about the ad that was on channel 4 and said I thought more could be done to highlight the problems people are left with.   It's so much harder to get across how you feel when others think you are the same as before.  Anyway onwards and upwards.  Wendy

14 months after my small stroke and I'm experiencing headaches and dizziness. I'm quite upset to realise this is because of that stroke. I had the 'why me?' experience as I thought of strokes as something that happened to really elderly people. Seeing other people's experiences on this site was really helpful and made me realise that strokes can happen to the most unlikely people, like yourself. Good luck with your recovery. We know we'll never totally recover, but we can get as near as we can! Good luck.