I suffered a stroke 10 days ago and I am now at home recovering, the stroke affected my vision with left Homonymous Hemianopia.
I came home from hospital a few days ago and I am getting quite anxious about having another stroke, especially whenever I have a pain in my body, such as a brief pains around my body or in my head (which is where my pain started when I had my stroke), I have read on here that some people do suffer pains such as headaches etc following their stroke. I’m not sure how to tell the difference in what is normal body recovering pains or when it is something I should be concerned about and be seeking medical support?
Hello Martin,
First off, I am happy you survived and recovered. For context, I suffered stroke in October 2022 and survived. Recovered very well. This is my first post in this association. I joined yesterday and glad I did to help people like yourself. ]
The important point is .you recovered. Do not worry about the pain. The doctors at the hostipital would not have checked you out of hospital if they had doubts about another stroke. Be positive.
The fear of another stroke is very normal. I felt that way after my stroke and went crazy searching in google for every possible triggers for another stroke. Kept calling my doctor. But, do not worry. Body has great healing power, the more you relax the better healing will be. Things that helped me are …
Doing something relaxing …for me, it was talking to my kids and family.
Stay positive, internet is filled with comments with fears and anxiety…don’t search internet too much, won’t help. I did that for everythign from Aspirin and other meds did not help.
Headaches are normal …it is originatiing from your fear of another stroke and your brain overthinking this. Trust me, I did the same…wish I did’nt. ;
Medicines are miracle. Healing will happen …you have to give it some time. Overthinking will intercept with medicine .just forget about “what coud have been” " what’s next" …kind of thoughts. Live in this moment. You / we all deserve it …that helps generate necessary harmones in your brain to boost healing - very imporatant
5.God has saved you for a reason, he has plans for every one of us …truely believe that without trying to reason it out. Pray whenever you can and God will be with you my friend.
I am fortunately filled with doctors in my wife’s family…they were the reason I healed and now sharing this to help others …so this in not my guess. Posting something that happened to me personally.
Hi Martin, and welcome to the forum, the club no one would ever wants to join but we’re glad you’ve found us now; if only to put your mind at rest so your brain can get on with healing unhindered by worry and anxiety
My stroke was ischaemic, but there are quite a few members on here who had Homonymous Hemianopia strokes who will no doubt be along over the next few days to help advise you.
In the mean times, as @ckandaswamy says, the fear of another stroke is normal. It was the greatest fear for all the stroke survivors on this forum…and we are all still here to tell our tale…many years on. I myself am 3yrs post stroke and I no more worry about another stroke than I do getting cancer or being run over by a bus when I cross the road. That concern is back where it belongs buried deep in the bowels of my brain where everything goes that I simply have no control over.
You are only a few days out of hospital, stroke recovery is a marathon not a race. So you are not going to be back to normal in say 6 weeks, we are talking 6mths to a year++ depending on the extend of damage basically. The pains in your head are normal, just reading the replies you are going to get here are going to cause your head to hurt. It may feel like:
a headache
a burning sensation
a lead weight on top of your head
a squeezing pressure
a sharp stab or other times it can be a tingling
I’ve experienced all the above and still experience some, the first 3 mainly and on a daily basis, and depending on how heavy my day has been, but they’re nothing I can’t live and sleep with.
Night time is when you are going to worry the most, when your lying quietly and most attuned to your body without any outside distractions. I had a broken ankle several years ago and night time was the worst time for experiencing similar pains and sensations there too, and thought nothing of them, it was just part of the healing process. It just seems more acutely alarming when its in the brain, but the brain has been attacked, its injured and needs to heal too. It can’t do that without some degree of discomfort or pain in the process; and if it becomes too painful then just take some painkillers for it.
Some of us on the forum put this post together to help new stroke survivors with what they can experiences over the coming months. Just click any arrows below titles to expand text.
Well this a first (afaik) that a first time post answers a first time post
Welcome to both of you and sorry you’ve had a reason to join us.
If you haven’t already seen the welcome post Welcome - what we wish we'd heard at the start that might be a very good place to read up because it’s stuff we often said in the first few posts and it has some links to other useful stuff. It will set context & start to answer a few questions
@Mgg1427 anytime you’re in doubt. A good place is going to A&E - we’ve probably all done it. I did it twice in the first year.
I don’t go now because I’ve been able to normalise some of those feelings and fears
@ckandaswamy (I think) that’s good advice you’ve given
Learning how to leverage the magnifying glass is a source of value here
I saw you were writing a post as I wrote mine
Hope your Sunday is going well
We should maybe review the welcome post it used to side post choldogs excellent post and when that disappeared it signposted Mahoney’s on the same subject and now that’s disappeared as well
I mostly wrote something on how to use search and never finished it but it ought to be in the welcome post as a link - maybe when @jps has passed his decompensation and is on the on-ward & upward again?
And welcome to the forum @ckandaswamy, we are always glad of to have the insight of another from their perspective. Having family with medical background is a blessing in recovery and I look forward to reading your contributions around the forum and hearing more of your journey
And long may your good recovery continue onwards and upwards and mine has
Yes I saw you come in as I was finishing
Never mind, it’s all good, between us all we get everything covered…stroke brains, we all connect like stickle bricks
And yes, I was thinking the same thing earlier when I went to find that Welcome post. It’s been a while since I’ve read through it. And I’m ashamed to say, because its been a while, I’ve forgotten what chlodogs was about now that its gone. Your memory is better than mine for those sort of details. It’s times like these that I wish I’d remembered to take a copy before it was lost.
@Mgg1427 & @ckandaswamy Hi & welcometo you both. Sorry you’ve had cause to join us but hopefully you’ll find it a great place to be.
@Mgg1427 headaches & all.sorts of weird sensations in the head are pretty normal after a stroke & many of us suffer them. As @ckandaswamy has said try to keep your anxiety levels down & not woery unnecessarily.
This won’t help but we’ve all probably done it. Things do improve over time but stroke recovery is a marathon not a sprint & you need to listen to your body. Reat loads especially in the early days. Having said all of that if you are worried you should get checked over. None of us are medically trained and therefore can only give you our lived experience.
Hi everyone, thankyou so much for all the support and advice, it is very reassuring to know a lot of what I am feeling is normal after a stroke. I had a surprise visit from my grandchildren today which was so nice but also so tiring, so I will take a look at the Welcome post tomorrow after I’ve rested for the night as it sounds like it will be very helpful. I’m sure I will have many more questions over the coming days and weeks and I will share more about my experience as I recover more to hopefully help others.
Hi Martin, welcome to the group, you’ve had fabulous advice from those who know so much. I can only add, I had pains in my shoulders and neck after my stroke in November and like you I worried, but it turned out it was stress related. Once I accepted that, the pains eased.
Good luck in your recovery
What I found useful was observing these sensations and noticing patterns. I remember all sorts of whacky bodily pings and pangs, not to mention lightning strikes to the eye and head tension, hypnic jerks, throbbing pulse, light headedness, shaking, muscle seizure, and feelings of dissociation. Some of these come and go today, three years later. My rule of thumb is that if I am not in a great amount of agony and distress, it is probably just my brain misfiring or running out of juice as it attempts to make new pathways. One of the most beneficial techniques I took away from Mindfulness, was to just let the sensation occur, observe it, go with it, and let it pass. After some practice at this, the brain comes to its senses and realises this is not another strike and will reduce its fight or flight mechanism over time. First year post-stroke, I took myself to A&E twice I think. I had a second MRI which showed no further TIAs or strokes. I think it is perfectly natural to want to do this post-stroke, it’s an immense shock to the system. At ten days, it is wise to allow the brain to get on with some self-repair, be kind to yourself, tend to positive and fulfilling activities, do gentle rehabilitation, and keep in touch on the forum because we are all on this journey together.
For me pain is just part of the experience. I identify it as the nervous system and the brain ‘talking’ and trying to build back pathways. I also think mostly it is phantom pain as your brain tries to reach out. That pain is a signal in your brain that is not directly connected to any tissue in your foot, leg or where ever.
Amputees frequently get discomfort from ‘limbs’ they no longer possess. Again I think it is the brain trying to create pathways. For one who has had a stroke the damage is in the brain not in body parts, but it is still about repair which the body will always try to do.
The discomfort I have experienced does seem to reflect an eventual recovery to a degree. So I celebrate the pain as a signal of future improvements.
Thanks everyone for the replies, it has been so reassuring to know that people have experienced similar with pains following a stroke and it has definitely helped reduce my stress over every pain that comes and goes. I hadn’t appreciated that I would get pains (or feelings of pains) around the body as my brain healed as several of you have mentioned.
I did speak to one of the stroke nurses at the hospital yesterday as I had a pain in my upper arm which was concerning me and I had for around 12 hours, after talking through the pain and her chatting to a consultant she reassured me it was unlikely to be anything of concern and my body simply healing but things to look out for if the pain changed and today I woke up and the pain had gone.
Due to the fatigue, I am sleeping a lot more than I would normally and I have realised a lot of the aches pains and stiffness I have are often following a sleep, so I’ve started trying to move around more when I wake up, which also seems to help with some of the pains.
Some people are lucky and a lot of what affects them in the first weeks fades away over the coming months but most of us find that it gets replaced albeit less worryingly by other aches and pains and challenges.
You definitely should sleep when your new brain asks - it’s the healing process (you might look up a spoon theory). It will have 1st call on energy so also keep up your nutrition - eat and hydrate with a thought to your new needs.
There may also be some changes around the 3 to 6 month mark too - but they might not occur or they might happen anytime in the next few decades!
As long as you monitor your risk factors take your meds then you shouldn’t have to worry more about this than otherwise eg the mythical red bus, cancer, the roof coming off in a storm etc
Fatigue is one we’ve all experience and now is a good time to get familiar with; start recognising the patterns to it to get the most out of your day. As I said earlier, it can get easier over the coming coming months/year, but if you can learn to recognise the pattern of it, you may start getting a lot more out of your days with some good management of it.
record your energy levels at different times of the day
find any patterns
find out if anything makes your fatigue better or worse
plan important activities for when you have more energy.
Certainly in the early weeks, just one excursion out was enough for me, and they were usually were usually hospital/GP appointments. On the days I didn’t have any of those I’d walk…half a mile if I was lucky.
Gradually, over time, I built on that to longer walks going further; weekly trip to the supermarket (begin in covid lockdown made that particular excursion a lot easier for me )
Have a snack or nutrient shake before excursions out to be sure you body’s fuel is kept topped up.
And it wouldn’t do any harm to keep some glucose tablets handy while you are out for when you feel fatigued.
Even visitors will tax the fatigue so you need to factor them into the mix too. So if your going to have the grandchildren visit, don’t plan to do much else that day as we all know how draining they can be
I am struggling to work out what the just 7 day bump in the road — and what is a serious problem. It’s hard trying to communicate with dyelexs. Talk in hard too.
To be honest @JPS because of my complete lack of communication and being in lockdown, I just rode it all out completely in the dark. Might as well have been on desert island; so I just had to make my own way through the quagmire. And that’s why I spent so much time reading out loud to get my speech back on track, at least to the point where I could communicate any issues. By which time the half of them had sorted themselves out on their own or I’d managed to find an explanation for myself.
You are already streets ahead of me from where I was in the beginning. It took me a year of failed attempts just to register and log on to this forum. I couldn’t even ask my family to do it for me. You are registered, logged on and asking questions/reading replies, albeit very slowly I’m sure. It will come on, have faith, you’re already ahead in my book
Always look on the bright side of life, eh. I am sure you are right, EE. I am ok, I suppose, but everything has gone very badly for the last 10 days. I am back to how i was 10 days after stroke. It’s dragging on day after day. Has anybody else experienced complete loss of speech for 5+ minutes? It’s getting worse.
Frequently, just not for that long a time. Those little stops can get frustrating at time, I feeling like I want to hit my head to get it started again For me the level of fatigue is one influence, another one is if it’s been a very quiet day at home with everyone out and basically haven’t used my voice enough if at all. The more I use my voice the easier it gets, so on days I’m home alone I talk to myself/read aloud, it helps and it’s entertaining when family catch me doing
Give it time, it will come on, a year from now it will be a different story
Speak to your stroke team about it or if you have a speech therapist then speak to them, even if it is only for assurance and peace of mind.
For me the level of fatigue is one influence, another one is if it’s been a very quiet day at home with everyone out and basically haven’t used my voice enough if at all. The more I use my voice the easier it gets, so on days I’m home alone I talk to myself/read aloud, it helps and it’s entertaining when family catch me doing