Hello everyone. I’m a new visitor to the forum having had my stroke [brain bleed] in May. Spent 4 months in hospital/rehab and have been home 3 months now. I’m walking [with aid of stick though the physio is trying to wean me off it.] Onto a new treadmill regime tomorrow! My frustrations are leg heaviness, mouth tightness [left side], arm stiffness. I may well have a botox injection to try to relax my arm. Have any of you had such an injection and how did it go? I’ve been fortunate to have a tremendously supportive wife and good friends. I’m a former sports writer who may one day write the story of this ‘adventure’, both occasionally good and often horrid. Be good to hear from any of you.
Neil
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@Strokevictim57 Hi Neil, welcome to the forum. Sorry you’ve had cause to join us but hopefully you’ll find it a helpful & supportive place to be.
It sounds like your recovery is progressing well & hopefully you’ll soon be walking without your stick.
I haven’t had botox myself but am aware of many people who have. Hopefully someone else we be along later to share their experiences of it.
Supportive family & friends are invaluable in your recovery journey & it sounds like you have some great support.
Best wishes
Ann
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Hi Neil, @Strokevictim57
Sorry you’ve had to join us but thank you for reaching out.
I’ve not had Botox injections but would wish you all the best for your continued recovery.
It’s a slow process and sometimes it feels like you’re travelling backwards, but keep at it.
I’m 10 months post stroke and I’m only now realising how difficult it is for families and supporters.
Best wishes
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Hi Neil, welcome to our forum. We are a merry band of stroke survivors and their families and carers. There’s always someone here who can offer some advice or information.
I’m 6 years post stroke following a hemorrhagic stroke (a bleed) which paralysed my left side. I have had botox injections in my affected arm but my experience wasn’t great. I had my first botox injection whilst still in hospital and I was told that I would need to have an injection every 3 months for the botox to be most effective. Botox injections are a specialist therapy and getting injections on a regular basis was impossible, with the time between injections getting further and further apart. In the end I waited 1 year between injections and my consultant agreed that I was getting no benefits from the injections but that she was unable to see me more regularly, so I reluctantly stopped having them !! Very frustrating.
Hopefully your experience will be more successful than mine. I live in Kent and stroke aftercare in the South East is basically non existent. So I hope that wherever you are, you receive better treatment. Unfortunately stroke rehabilitation services are a postcode lottery.
Sounds like your recovery is going well so far. Feel free to join in the chats and discussions on here. I have found the forum to be really helpful and informative and hope you do too.
Wishing you well in your recovery.
Regards Sue
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So nice of you to respond Sue. Thanks very much. I’m fortunate that I live near Reading and the Royal Berks has wonderful stroke care. I suspect my botox experience may be more satisfactory simply because of my proximity to the medical services. I’m finding the whole bloomin’ experience frustrating as I’m sure you did and everyone does. I shall keep the conversation going through this forum though typing with one hand is another frustration. It’s important to keep in touch with those who may be able to lend a helping hand. That’s what we should be here for. Best wishes Neil
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Hello Neil,
I also had a bleed just over a year ago. I am writing a book on it, too. The book serves as a diary at the moment, and has everything that I might need (and have needed) to look up… check dates when new things happened or milestones achieved, etc. One thing that is really difficult is to keep the mood of the book positive… I’m afraid it’s not at all an accessible read because of the difficulties I went through. Oddly enough I put in scenes from films and quotes to lift the mood. I would think of movie scenes after my stroke… something to talk about and find out who else knows the same movies.
Heaviness is very common. Question is “Does it reset over night?”
My leg is pretty stiff. My arm underwent a remapping procedure which you can read about on this forum. My arm is doing great; you’d think it escaped the stroke, at first glance.
Wishing you good luck, and good recovery,
ciao, Roland
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Hi @Strokevictim57 and welcome. As @pando has said, leg heaviness is very common. Naturally among stroke survivors we automatically assume it’s the stroke effect causing it. But there can other reasons such as nutrient deficiency…vitamin E or B12. For me it was Folic Acid, once I was put on that by my doctor the heaviness went away. So it might be worthwhile speaking with your doctor about that as there could a similar simple solution just waiting around the corner for you.
What are the symptoms of B12 deficiency in legs?
Vitamin B12deficiency symptoms may include:
- strange sensations, numbness, or tingling in the hands, legs, or feet.
- difficulty walking (staggering, balance problems)
- anemia.
- a swollen, inflamed tongue.
- difficulty thinking and reasoning (cognitive difficulties), or memory loss.
- weakness.
- fatigue.
And a B12 supplement wouldn’t go amiss regardless as it beneficial to the brains’ recovery anyway.
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Hi Neil!
Nice to meet you.
May I ask you a few questions?
How are you mentally overall? Strokes can make people very mentally unstable. Some have more physical issues than mental, or vice-versa. Some have both. Just curious.
My mother had a brain bleed stroke at around 70. She recovered very, very well on physical level (no tingling, walked almost perfectly, great reflex and balance, no muscle issues, no lingering speech issues, great memory, etc.). All that said, she basically lost her mind after her stroke. She was cognitively sharp (most of the time, but, emotionally, she lost her mind. Towards the end of her life, her rational mind started to go, too. We didn’t understand how to help, but, we realize now that we couldn’t.
All the best to you in your recovery.
Please take good care. 
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Roland, most of your issues have to do with muscles. I am going to do some research on that whenever I get some free time.
My mother, as you know, didn’t have these issues (she also had a brain bleed). After 8 months or so, her issues were almost all of mental or emotional nature.
By the way, where did the stroke occur in your brain? My mother’s was in the frontotemporal region. I got her medical records.
You asked why I joined this forum, that is UK-based? Because other stroke forums are no like this one. They are not as thorough. Not only that, I hardly saw any that were well put together, with active and current participation, etc .
Have a great weekend. And always remember “All is well, getting better” (haola).
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Matthew,
That is amazingly kind of you. I don’t know where the stroke occurred, just that they said it was a bleed too deep to operate. After next week (my last week of teaching before Xmas) I’m going to request my brain scan that they took after my stroke.
It’s a real pity your mother didn’t pull through, especially as her physical recovery was so flawless. It must seem quite puzzling.
My case is complex:
- My biggest problem is sensation / feeling. My proprioception is filling in every week. But it is still very absent and weak. At night I cannot tell where my hand is.
- Next, my leg muscles are unsettled (good day / bad day for 8 months) today is bad. Tomorrow is good / Saturday night I am going to meditate and try (as an experiment) to have another good day on Sunday. I am curious to see if I can override my pattern (probably set out by my subconscious brain.)
- My eyes are unsettled. Ironically I have 20/20 vision. But blepharitis now MGD. I also have blepharospasms in the eyelid. Also, lately, dry skin or Rosacea. I have learned a ton about my eyes this week, thanks to a second visit to another ophthalmologist. Yet my advancement in understanding comes mostly from my own research. My belief is that my High Blood pressure medication (directly or indirectly) has disturbed my eyes. In particular I came across side effects with Amlodipine. Then I take Perindopril, Doxazosin and Spironolactone. Of course keeping my BP low is great for my eyes.
In time I hope all 3 problems will stabilize and improve.
I exercise, work hard, meditate, pray, and do all I can to recover yet I’m still a little fragile, even if my confidence is on the mend.
Your words of kindness and wisdom have always stood out, and I so appreciate your interest, All the best, and have a great weekend
ciao, ciao, Roland
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My mother remains a big mystery. I sometimes think her terrible anxiety before her stroke made things a million times worse. I would think that some people bring their past mental history into a stroke.
I see you’re on a lot of blood pressure medicines, as that is what caused your stroke. They said my mother’s brain bleed was caused by high blood pressure in the setting of very low platelets.
I am not for medications in general, but you MUST be on the BP medicines. This is an exception. I think you know that.
Our own research is so vital to understanding our conditions. We cannot rely fully on doctors, etc.
Of course, you’re fragile - and you will be for a long time. You’ve been through a lot. .
I see many more improvements coming your way. Just keep doing what you’re doing. It’s still early in the game for you. A year is nothing in stroke time, despite what others say.
Talk later,
Matthew
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I agree with you. I made the mistake, after years of cascade effect ( I would always need to up the dose after a while, rather like people get used to a pain killer then need more and more to have the same effect ) I decided phase out my BP meds until I wasn’t taking any ; that lasted a few years ( perhaps 5 ) until I got the stroke with BP 268 / 198. Now it has been 133 / 86 and miraculously holding, for a year, but the side effects are creeping in ( I had a good 6 months of mild headaches until I got used to the lower BP ) especially with my eyes and possibly some muscle stiffness associated with my meds…
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Hi @pando
268/198 ?!
And I thought mine was high on Wed at 200 over 100
Anyway what I came to say is I’m still seeing improvements in my hand continually at 3 years. Continuously would be nice but I’ll settle for continually .
I can definitely begin to open my fingers in some circumstances and orientations.
That’s new this week.
It’s not a total surprise.
I’ve had a growing feeling that something below consciously detectable was occurring for what was maybe a few weeks now
I do push my hand to respond to my brain and have done for as long as I can remember post stroke.
For most of the time it felt like screaming in the darkness.
Just recently I seemed to have got a sleepy response.
first of all wasn’t visible or palpable but is today - there was enough there that I could show Lea today. Sharing progress helps us both
I’m going to have to work a lot before I get to the stage that I can hold a pen or a dinner knife
But as of right now I have infinitely more confirmation than I did in the last month, year or post-stroke .
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I’m going to write more about this elsewhere - but I am interested by your comments about fora (Is that the plural of forum or is it forums it’s definitely not forii ! ) .
First your comments about the platform - this is discourse and anybody who’s prepared to spend maybe $100 or 200 a month can set up a discourse instance hosted on a cloud service like Digital Ocean.
If one already has a server then it can be completely free as the software is public domain
I suspect we have the expertise amongst ourselves should we find a desire to set it up .
But the community is the participants.
Community is a complex concept that results from synergies between the participants. It has a culture which is a combination of people and behaviours
Therefore the essential of community are the people & governance- not the supplier of the platform - but the operator is potentially a success or failure factor
There are a few fundamentals or foundations of civilised community such as democracy (Which needs representation where there is something approximating a state), freedom of expression of opinions, diversity - sometimes called requisite variety - and especially important here where we have neurodiversity that may have been caused by a neurological impacts as well as being a natural trait of genetics, tolerance, civility, dispute resolution,…
When they’re present they’re mostly unneeded and can be invisible - sometimes called hygiene factors - when they’re needed and absent then there’s significant cause for concern by everyone because there is danger of inappropriate behaviours such as oppression, and or fading participation that eventually results in a ghost town.
The balance is the equivalent to the Goldilocks zone required for the evolution of planetary life
2¢ (or maybe ‘the $64m question’)
Ciao
Simon
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A guy at my aphasia group suddenly started getting movement in one of his fingers, whist at the meeting, a little in his arm too, which we were all excited about. He has since gotten himself one of those mechanical gloves, been using it for about a week now, which he seems to think might be helping buts it’s early days yet. Right now it’s making him feel more hopeful though 
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That is exactly how I feel about improvements to my proprioception… a hint, then I make sure, then I announce to anyone & everyone. I’m so encouraged by your progress with your hand, Simon. And yes, 268 / 198 is not a misprint ; the doctors said they had never or rarely seen anything so high. I know you’ve been a bit on edge ( to put it mildly ) so yes, your bp is definitely a bit high ; hopefully you’ll keep an eye on it, and it will settle as things calm down.
The progress you are making with your hand is the same progress I’d like to make with my leg… I just went for a walk and it’s full of paresthesia, again…
Speak soon, ciao, congrats again, Roland
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Hi Matthew. Appreciate your response. I’m good mentally thanks, indeed a couple of former colleagues who have visited me have mentioned how impressed they are with my memory of stories from my newspaper reporting days. The only mental suffering I do have is the frustration of the time taken to recover, though I know it’s a long process. Staying both patient and positive are imperatives. I just wish my left leg would lighten up a little!
Regards Neil
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Hi Neil,
sorry for going off topic on your original post.
It’s great your memories are so plentiful & vivid
A heavy leg is a classic… hopefully it will improve with time
ciao, Roland
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I had a stroke in April and yes suffer from the heavy leg problem. Have you tried acupuncture? I’ve found it helpful although it doesn’t resolve the issue. Walking, swimming and regular physo should improve it as well. I am a horse rider and that is the only time my leg feels normal. muscle memory kicks in I guess. I won’t recommend that though, unless you fancy it
Interested to see that the Royal Berks were helpful to you (my husband works in Reading). I’m nearer to Oxford, so went to the JR, I didn’t have a good experience. in fact it was horrible.
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Hello 
as others have said and I’ve said elsewhere hello welcome .
If you use the magnifying 
glass above and enter into the search box “Botox injections” you’ll turn up 39 posts that may give you usable insights .
I’m 3 years down line from my stroke event. My only discussion about Botox was one where my PT suggested that challenges were more muscle control and tendon stretching - so exercise - than they were fixable by the botox and thus the downsides of Botox were not worth risking? / experiencing - although we didn’t then go into detailed discussion but from memory they were diminishing returns and detrimental long-term effects-
I too find one hand it typing a pain given that my right hand is affected and I was born right side dominant - so I avoid it. I have a Android phone, I have downloaded the discourse app - this platform is a discourse community - and I also have gboard from Google that I talk to. It’s a speech to text and expansion of abbreviations for things I use regularly save me from 99% of the typing I would otherwise have to do
It does manage to sometimes scramble my worms, and so comes up with amazingly bizarre phrases which once or twice I have I posted - it is generally good enough that I now even compose emails and things that I will send from the PC on the phone first
I will also add the I hope it stays emotionally stable for you. I thought it had for me too until recent stress proved that I’m not as good at handling what once would have been water of a duck’s back. Last year I went to something where somebody played it really loud music and that made me feel physically sick and I have been other things I had discovered during the last 3 years that weren’t immediately obvious but it clearly impacts from my stroke
Sorry you had course to join us but now you’re here I hope you find it adds useful info for your journey towards a good post stroke life
Ciao
Simon
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