Hi, I'm 18 months post stroke. I've noticed side effects that I was wondering if others had the same. I know post stroke fatigue is common, it drives me mad. Also mixing up words or numbers when tired or not concentrating. But I've also noticed my facial expression or reactions do not always match the situation I'm in, I can smile or laugh at inappropriate times, which I have to apologise for. I've also noticed that I have more saliva in my mouth than before which is embarrassing. Has anyone else noticed other side effects
Emotionality causes many of us to cry for litle reason,and a few of us to laugh for no reason. Perhaps you are still on the tale end of that. For me, all the miriad of side effects eased throughout year 2 and year 3. The easing is so slow I can hardly notice, but easing does still happen. A diary is helpful to remind me just how much I have improved.
Odd side effects for me include: Excessive aching after moderate exercise such as sweeping the patio. Apparent tooth ache, when its not actually my teeth. Very realistic. Very good when I work out its not my actual teeth nor gums, just the brain still learning whats what.
Quite agree the SF is just the pits. And the slightest sleepy tiredness makes SF worse and all the other bits fail. When sleepy tired I start to trip over things I used to trip over in the early days and as for memory, well I cant remember where i live on bad days. I have worked very hard to achieve 7.5hrs sleep a night. This is the optimum amount of sleep for me. Very hard to enforce the 7.5hrs but it does pay dividends.
I wonder if its best to ignore all the problems and live as best we can. Not at all sure. Or is it best to stop reviewing ourselves and move on ? I dont think either of these is best but I am not sure. No one to ask other than on the forum.
best wishes Sox
Colin
Yes i completely understand what you mean
yes sox.
all of those sound familiar to me.
the emotional side askew. laughing out in inappropriate situations. easily tearful. classic symptoms of What s called post stroke emotional lability.
the fatigue, few of us escape that one.
the saliva one, though it can sound disgusting. I have half a numb face from eye to chin, inside cheek lining and lip.
it feels as though been to the dentist, hsd about 6 injections. and it never wears off (for me anyway).
I find sometimes when concentrating i can drool a little off my chin. hadn't felt a saliva build up. this can be highly embarrassing to me.
not always a laugh a minute in stroke world eh? still I feel I have much yo be grateful for
and strangely to me life can taste sweeter.
an appreciation of small things previously taken for granted.
if i can feel the rain running down my face. sunshine, snowflakes. I think ah brilliant I must still be above ground.
those kind of feelings now make me smile after previously knocking at deaths door. a sunrise/sunset, full moon, or an eclipse can blow my mind. get me in tears.
many more things I enjoy post stroke that were previously humdrum.
iv heard cancer survivors saying similar.
cheers. v.
Vinnie
What a kind and thoughtful reply.
Colin
Thankath you for your reply. Your response made me smile and feel emotional. When people hear I've had a stroke they say how sorry they are but I say I'm a survivor and it could have been worse. I'm back at work as a nurse looking after babies. I'm independent at home. It's just the emotions and fatigue that gets me. I was lucky enough to havebeen able to pay for my pfo to be closed which caused my stroke. Reading other people's comments on the forum makes me realise how lucky I am.
Hi there, its been 1 year since my stroke. in addition to being extremely tired all the time and mixing up words and numbers, i feel it very hard to concentrate (p.s. i like how you are able to articulate it i struggle making sense sometimes). At work if i am writing an email and someone is talking next to me, even though im trying to concentrate on the email, i end up typing what they said. I also feel very angry some days and extremely anxious if there is any uncertainty about something. I also feel like things i genuinely used to enjoy before (such as cooking) no longer appeals to me as much. perhaps because i am more tired, i feel less energy to do these things. I know for a fact that before i knew about the mental difficulties you suffer after stroke, i used to behave inappropriately with people, such as invite them home and then ask them to leave immediately - something i would have never done before. I feel emotional changes and i feel very angry or very upset or overly laughing and childish at times.
At the same time on the positive side of things :) i feel like i have changed as a human being and become more grateful. I even made a grateful game which i hope you would enjoy
Hi there. One year is very early in the recovery process, so don’t beat yourself up. How amazing that you are back at work. That is a great achievement in itself. Please remember that stroke causes emotional upheaval as well as having a physical impact. I am three years post stroke, but in the first year my main battle was to survive. I found people’s conversations both hard to follow and tiring to listen to. I did have an early rule, which I made known to friends, that if they visited I might ask them to leave early if I was tired. That was usually by 9pm. Gradually, I got less fatigued and now can maintain a conversation instead of sitting through chatter that seemed an ordeal. I cannot, however, sit through any sort of meeting or lecture.
Like you, though, I have become more grateful. I am now 75, so time and time for improvement gets shorter. I try to make every day matter. Things will improve further. Please remain positive.
Thank you for your positive response - I will do :)
Hi there I’m 3 months after my stroke I feel well most of the time but I feel something I get like a fuzzy head and feel crap does anybody else suffer this.
Hi there I’m nearly 4 month after my stroke wanted to ask I sometimes get like a fuzzy head and feel rubbish general I keep well does anyone else get this.
After four years the fuzzy head syndrome is still quite often with me and I have bouts of feeling rubbishy too. Many of the problems the stroke left with me I have managed to overcome but a few still elude me and make life difficult.
Deigh
Thanks for that deigh I’m glad it’s just no me so is this caused by stroke fatigue I used to have it all the time but now it’s random I sometime get it at night but I also get in the afternoon aswell
James, I think it is part of the same syndrome. I have had post stroke fatigue ever since I cam out of hospital. It has eased, but every day follows this pattern: 7.30 am wake up, get washed and shaved and have breakfast. I feel fine. Short walk 9am. Still feel fine. 11 am, start to feel the fatigue coming on ‘fuzzy’ is a good way of describing feeling. Carry on doing small things but by 11.30am feel I could go to bed. Hang on till 12.40am then have to get into bed for an hour to rest. Sometimes I nod off, sometimes not. Get up 2pm and then can last till 11.30pm. I find this odd, because the fuzzy fatigue feeling starts only 3.5 hours after a good night’s sleep. I do not get this feeling after my daily rest and am then reasonable for the following 8 hours.
I cannot explain this, but listen to what my body tells me and rest accordingly. Am used to this pattern of daily living now, but it’s a funny old experience.
Thanks it’s an odd feeling it’s like ur in a haze like a headache is going to start but it doesnt
Hi James, I also had my stroke4 months ago and I sometimes get a fuzzy head, I do think it is part of the stoke fatigue,but I have also noticed it is much worse after I have been exposed to very bright lights , , I feel weak , fuzzy head and my speech and thoughts are much slower,Iusuallyend up having to stay in bed, and rest. I wish I knew what does trigger it, or is it totally random, Best wishes to you, Lyn
My rather prolonged experience of SF (medical speak is post stroke tiredness, but I use the term SF) is that there isnt a specific trigger. For the first two years the brain will be busy rewiring and it needs rest. Deny the rest and you will get "closed down" by your brain. Do however keep a diary and you might see some connection between what you did yesterday and how the SF is today. I have noted how, if I do too much on Monday then SF is bad on Tuesday and a little bad on Wednesday.
Things like excess light, extra sounds and about a thousand other things can tire your brain. It is trying to relearn what was once routine. When we are a baby our brains have a different fluid that enables rapid learning. At our age we dont have that fluid but we are relearning everything and it can be painful.
I wouldnt stay in bed, I will sit and rest or feet up on the settee. Anywhere quiet and comfy, but not in bed.
At four months I needed a 30 minute nap every two hours. Fight that and I got really bad. So I avoided "overdoing" stuff. After nine months the fatigue lifted briefly and was replaced by a more permanent fatigue but at a lesser level. So I didnt have to nap every two hours. I now have three or four naps as and when I think the fatigue is settling in. Having a stroke fatigue nap is not the same as having regulation sleep. We need both. I have however noted that a bad nights sleep will result in much worse SF.
Just my observations.
Keep the faith and keep smiling.
Best wishes
Colin
Thank you Colin for your kind and encouraging words, Your empathy is much appreciated. Best wishes to you Lyn
In my first year of handling the stroke I had to be very careful of even what I watched on TV. Violence would follow me in my dreams at night. Anything even fairly dramatic would upset me. Nowadays I am much more in control but too much excitement in any can knock the stuffing out of me the following day.
General tiredness has not changed much. I manage the mornings but by midday I can't keep my eyes open and must crash. I can sleep then for anything from 15minutes to more than an hour. By the evening I keep going fairly well till 9.30 and then hit the sack, leaving my wife to watch recordings of the Antique Road Show with the volume down low.
Deigh
Hi James, I had my stroke only last week but previously I have suffered with severe anxiety which also causes me to have fuzzy heads and a feeling that I might pass out. Since my stroke my anxiety is much worse but I was told that anxiety is quite common after a stroke even if you don't already suffer with it. Maybe this could be the problem.