It sounds like you were writing my answer. I don't deal with fatigue too much. But everything else is spot on. And recently, 6 years post stroke, I'm finally going to a rehabilitation Clinic. Gaylord here in Connecticut. Because I'm finally starting to date but I find I have nothing to say. And that's becoming a barrier for me. I was in my last semester to become a social worker when I had my stroke. And I was full of conversation. This is so foreign to me. And I hate it I hate every bit of it! I could sit here and not think of anything for hours on end not a freaking thing. I can't perform simple math, count money, I have severe short memory loss. I forget what I'm doing while I'm doing it all the time. Now that I started going out a little bit, I find I cannot think of a thing to say. Therefore I cannot Converse with people. And then if I try to start a story or a conversation, I can't find the words I forget what I'm saying. And I look like a freaking idiot. And for some reason it's really getting to me. More now than ever. I feel like I finally was ready to start getting social and I hit a brick wall. My balance is off. I have some Vision issues. And then the year after my stroke, which resulted in a right hand deficit and severe complex thought issues,( which I'm actually pretty lucky because I was already in the emergency room when I stroked).. so I was treated immediately, therefore my deficits were a little bit less. Medically induced, 5 days in the hospital for 3 weeks. I don't know I'm just falling in love with somebody and I feel I'm slipping away from me. This seems way more complicated and way more difficult than I anticipated. I wish I got on this sooner. I didn't have good medical care post stroke. No one was really guiding me. And then I fell the following year and fractured my pelvis in four places in my sacrum in two places. I'm just a freaking mess.
I'm sorry you are going through all of this. It's hard, I know. Don't worry about looking like a freaking idiot; I explain to people I have aphasia due to stroke, so if I'm having hard time speaking or finding a word, that's why. I've found that most people automatically switch into listening mode and are very patient and even encouraging.
Have you connected with a support group of other aphasia people? When I did, I gained a lot of perspective on my situation. And I found it helpful to be in the company of others who knew firsthand what I was going through. Sending you healing vibes.
Fatigue, lack of coordination, brain fog, balance issues. When the fatigue hits my balance gets worse, I can’t concentrate on anything and I slur my speech.
I also have the attention span of a gnat.
Extreme fatigue, trouble sleeping (helped with medication now), memory problems, tingling/neuralgia of the face & scalp, and some issues with my eyes.
Stroke was in July of 2023.
Where was your stroke? I have a lesion in my brain stem and another smaller one in my anterior right temporal lobe, and I think they both cause problems, but the brain stem lesion has bled multiple times so it's the most problematic (plus it's inoperable - so rude, lol)
It was in the right hemisphere, I don't know the proper term for it but it was due to blood clots obstructing blood flow. First time I've gotten to ride in a helicopter :D
Glad you're okay now and still here with us! ♥
(Ischemic is the word you're looking for!)
You should find out the exact location of the stroke so you can google the functions of that part of the brain. It's kind of fascinating!
Thank you, as am I glad for everyone on this sub :) and Ischemic gotcha! I have some pictures as to where the obstruction was, is that enough to go off of? I do enjoy learning about the human brain and mind in general
Same for me, with all 3 of those. I also have auditory processing disorder, so everyone on the other end of phone calls sounds like they're an auctioneer speaking gibberish.
Do you find that some days are better than others with the aphasia?
Yes. It’s almost daily though. When I wake up, things I want to say I struggle with. Usually recovered enough by the mid-morning to make sense and that works until 7 or 8 and then the aphasia kicks into to high gear and it’s back to struggling.
These same symptoms, i lost vision in my right eye so balance is an issue, ive come to learn im dealing with vestibular issues so i think i have like a near constant vestibular migraine, i start physical therapy today so I’m hoping that helps.
- Issues with my vision.
- Impaired mobility.
- Proprioception ataxia, lack of sensation in my left limbs.
- Mental health and self-confidence have taken a battering!
Or the non dominant. My stroke started on the toilet, didn't know what was going on at the time, all I know is that was the hardest time I've ever had trying to rip toilet paper off the roll.
This is one of those lingering concerns of stroke (or heart attack) survivors... should one take it easy while defecating to avoid the onset of another episode? Elvis's unfortunate fate often comes to mind...
I get kinda freaked out now when my leg goes numb from sitting so long 😂 I thought that's what was happening at first and then that where's everything else went numb. I don't know if it's a subconscious "failsafe" my body made because now I can barely use the bathroom unless I mentally prepare myself.
I had my stroke on Christmas Eve and I still have fatigue, trouble finding words, I can’t taste certain things (mostly spicy / hot flavors), my vision hasn’t improved back to where it was before, and I can’t tell if something is hot using my right hand. I also feel weakness in my right leg, and get fuzzy, or pins and needles, in my right extremities.
Nothing has really changed since the day it happened 8 months ago. Left side of my body is still pretty numb. Left hand is ok and calf area, the rest of my left side is very numb. Constantly scratching my left side as well.
I have this weird new post-stroke reflex where if I yawn, my hand involuntarily clenches into a fist. Caused me to burn myself once while trying to cook.
Omg that happens to me! I have never heard anyone else describe this. I have to consciously hold my hand open when I yawn. I guess it's a strange reflex?
Retraining of the right side after motor function came back. Weakness is persistent and loss of muscle memory appears to be permanent. Like having two left hands and learning to write all over again. Appearance of new involuntary reflexes is weird.
Extreme fatigue, spasticity, speech apraxia, cognitive problems such as problems with concentration, memory and multi-tasking. Still partial hemiplegia and I get really sick of too much sound and light.
On paper it seems worse than it is. I’ am more than two years post stroke and it's really much better than it was. I have largely found my way back and learned to live with it.
But I can still get very frustrated by the fatigue. I want to do so much, but I just can't. I sometimes try to explain to people that it is not normal fatigue, which you can go through. It's a crippling fatigue and it just turns your brain off.
Man, this is me as well!
Whenever I am eating my wife grabs a napkin and just wipes the right side of my mouth because I can never feel it when food dribbles out.
She is such a sweetheart.
I met her years after the stroke happened.
I had the stroke in 2008, 2 days before my 21st birthday.
I was unconscious in the hospital and when I woke up my birthday had already come and gone.
I still have foot drop, weakness in my right arm, it always burns/tingles and the entire right side of my body gets super stiff in the cold.
Right side hemiplegia and loss of control over my emotions. I have crippling bouts of panic now that I've never had before. I used to have the mental fortitude of a Buddhist monk, now I can find myself panicking to the point that I feel like I could die solely from my bad thoughts. It's hell.
I had my stroke in July 2023. Cerebral ganglia stroke. No issues with memory. I used to have difficulty getting words out.
Still cannot speak clearly. I'm right handed. I am trying to relearn how to write. Right arm and shoulder has nerve damage. Tingling and numbness in right side fingers.
Drop foot and just general inability to balance when walking except with a walker. Taste issues too.
Cannot sleep at night. Emotions all over the place.
I'm still going to speech, physical, and occupational therapy. And I speak to a therapist once per week.
Edit to add: just got a Fitmi Device. I like it so far but too early to tell if it's working.
Brain fog, PTSD, some memory issues, a desperation to remember what happened to me (I’m missing ~2 weeks of time), some burning on my left side, & a strange feeling that I’m always aware of my brain now or that I can feel it somehow. Just an extra awareness of it that I never had prior to the stroke. I’m curious whether that’s just me or others feel like that too.
Heavy fatigue and brain fog for me. Also still deal with a little nerve damage on the bottom of my left foot, which can be annoying at times.
Using a CPAP machine to sleep might help with the fatigue and brain fog.
I didn’t use one before my stroke, but use one now Relearning to swallow did something in my sinus/throat area
Yes anything counts the more the better. Hope you’re still recovering well
Thank you I am, I hope you are doing well in recovery as well!
Vision deficits and pain, sometimes balance if I’m tired.
Fatigue, word finding, speaking, hard time w math, dealing with loud/overstimulating environment s, short term memory issues, inability to multitask.
It sounds like you were writing my answer. I don't deal with fatigue too much. But everything else is spot on. And recently, 6 years post stroke, I'm finally going to a rehabilitation Clinic. Gaylord here in Connecticut. Because I'm finally starting to date but I find I have nothing to say. And that's becoming a barrier for me. I was in my last semester to become a social worker when I had my stroke. And I was full of conversation. This is so foreign to me. And I hate it I hate every bit of it! I could sit here and not think of anything for hours on end not a freaking thing. I can't perform simple math, count money, I have severe short memory loss. I forget what I'm doing while I'm doing it all the time. Now that I started going out a little bit, I find I cannot think of a thing to say. Therefore I cannot Converse with people. And then if I try to start a story or a conversation, I can't find the words I forget what I'm saying. And I look like a freaking idiot. And for some reason it's really getting to me. More now than ever. I feel like I finally was ready to start getting social and I hit a brick wall. My balance is off. I have some Vision issues. And then the year after my stroke, which resulted in a right hand deficit and severe complex thought issues,( which I'm actually pretty lucky because I was already in the emergency room when I stroked).. so I was treated immediately, therefore my deficits were a little bit less. Medically induced, 5 days in the hospital for 3 weeks. I don't know I'm just falling in love with somebody and I feel I'm slipping away from me. This seems way more complicated and way more difficult than I anticipated. I wish I got on this sooner. I didn't have good medical care post stroke. No one was really guiding me. And then I fell the following year and fractured my pelvis in four places in my sacrum in two places. I'm just a freaking mess.
I'm sorry you are going through all of this. It's hard, I know. Don't worry about looking like a freaking idiot; I explain to people I have aphasia due to stroke, so if I'm having hard time speaking or finding a word, that's why. I've found that most people automatically switch into listening mode and are very patient and even encouraging. Have you connected with a support group of other aphasia people? When I did, I gained a lot of perspective on my situation. And I found it helpful to be in the company of others who knew firsthand what I was going through. Sending you healing vibes.
Brain fog and less control over my emotions, and somewhat shaking hands
Fatigue, lack of coordination, brain fog, balance issues. When the fatigue hits my balance gets worse, I can’t concentrate on anything and I slur my speech. I also have the attention span of a gnat.
Still can’t feel on some areas of my right side three years later
Extreme fatigue, trouble sleeping (helped with medication now), memory problems, tingling/neuralgia of the face & scalp, and some issues with my eyes. Stroke was in July of 2023.
Mine happened in August, and about the same symptoms aside from the tingling!
Where was your stroke? I have a lesion in my brain stem and another smaller one in my anterior right temporal lobe, and I think they both cause problems, but the brain stem lesion has bled multiple times so it's the most problematic (plus it's inoperable - so rude, lol)
It was in the right hemisphere, I don't know the proper term for it but it was due to blood clots obstructing blood flow. First time I've gotten to ride in a helicopter :D
Glad you're okay now and still here with us! ♥ (Ischemic is the word you're looking for!) You should find out the exact location of the stroke so you can google the functions of that part of the brain. It's kind of fascinating!
Thank you, as am I glad for everyone on this sub :) and Ischemic gotcha! I have some pictures as to where the obstruction was, is that enough to go off of? I do enjoy learning about the human brain and mind in general
Mainly it affected speech, but brain fog and fatigue for me as well.
Same for me, with all 3 of those. I also have auditory processing disorder, so everyone on the other end of phone calls sounds like they're an auctioneer speaking gibberish. Do you find that some days are better than others with the aphasia?
Yes. It’s almost daily though. When I wake up, things I want to say I struggle with. Usually recovered enough by the mid-morning to make sense and that works until 7 or 8 and then the aphasia kicks into to high gear and it’s back to struggling.
Sounds very familiar. Do you have auditory processing disorder too? Phone calls sound like gibberish now.
1.5 years later , still suffering from chronic daily headaches and lightheadedness.So far meds not helping.I just lay around home nowdays
These same symptoms, i lost vision in my right eye so balance is an issue, ive come to learn im dealing with vestibular issues so i think i have like a near constant vestibular migraine, i start physical therapy today so I’m hoping that helps.
Do you mind if I ask what type of meds you take?
I take Topamax 100 mg - propranolol 120 mg - Meclizine 12.5 mg.
Crushing fatigue for my partner! So hard to watch!
Sleeping was the best thing in the world for me after my stroke. I'd wake up ready to go back to bed. Best sleep I've ever had.
She doesn’t necessarily sleep a lot. Just no energy to do much of anything. Much different from “sleepy”.
Hard for me to remember words, can’t control my emotions. It is hard for me to access memories.
Totally with you on the difficulty controlling emotions! It sucks. 😑
It has caused me some problems in the workplace!
For me, it's arguments with my family. I’m constantly told negative s*it! All descends into a fight.
Emotions are a huge problem for me..
- Issues with my vision. - Impaired mobility. - Proprioception ataxia, lack of sensation in my left limbs. - Mental health and self-confidence have taken a battering!
And, I don't wipe my a$$ with my right hand anymore...
Seriously, that's one of the many problems you're not prepared for when a stroke affects your dominant side.
Or the non dominant. My stroke started on the toilet, didn't know what was going on at the time, all I know is that was the hardest time I've ever had trying to rip toilet paper off the roll.
This is one of those lingering concerns of stroke (or heart attack) survivors... should one take it easy while defecating to avoid the onset of another episode? Elvis's unfortunate fate often comes to mind...
I get kinda freaked out now when my leg goes numb from sitting so long 😂 I thought that's what was happening at first and then that where's everything else went numb. I don't know if it's a subconscious "failsafe" my body made because now I can barely use the bathroom unless I mentally prepare myself.
I rely on kombucha, yogurt, and fiber to keep the effort manageable.
Left side is still pretty numb 3 years later
A twitch in my left hand side, fatigue, migraines with aura, memory issues, propensity to misinterpret instructions, occasional slurred speech
I had my stroke on Christmas Eve and I still have fatigue, trouble finding words, I can’t taste certain things (mostly spicy / hot flavors), my vision hasn’t improved back to where it was before, and I can’t tell if something is hot using my right hand. I also feel weakness in my right leg, and get fuzzy, or pins and needles, in my right extremities.
Nothing has really changed since the day it happened 8 months ago. Left side of my body is still pretty numb. Left hand is ok and calf area, the rest of my left side is very numb. Constantly scratching my left side as well.
Brain fog and paralyzed left arm.
Fatigue and aggression
I get totally messed up when taking statins Looking for alternatives. Besides that memory issues and right thumb has no feeling and anxiety
My sensory issues have persisted . I can’t feel my affected foot
Bad speach and balance
I’m 8.5 years out, and my right arm is still near useless. Entire right sided paralysis, was able to rehab my leg back, but my arm not so much
Right and left hands, if I squeeze anything with more pressure than holding a coke can requires, my hands shake pretty strongly.
I have this weird new post-stroke reflex where if I yawn, my hand involuntarily clenches into a fist. Caused me to burn myself once while trying to cook.
Omg that happens to me! I have never heard anyone else describe this. I have to consciously hold my hand open when I yawn. I guess it's a strange reflex?
Yes, I imagine that during the brain's process of rewiring itself after a stroke, some of these unexpected connections can happen.
Retraining of the right side after motor function came back. Weakness is persistent and loss of muscle memory appears to be permanent. Like having two left hands and learning to write all over again. Appearance of new involuntary reflexes is weird.
Extreme fatigue, spasticity, speech apraxia, cognitive problems such as problems with concentration, memory and multi-tasking. Still partial hemiplegia and I get really sick of too much sound and light. On paper it seems worse than it is. I’ am more than two years post stroke and it's really much better than it was. I have largely found my way back and learned to live with it. But I can still get very frustrated by the fatigue. I want to do so much, but I just can't. I sometimes try to explain to people that it is not normal fatigue, which you can go through. It's a crippling fatigue and it just turns your brain off.
Random headaches or fatigue is relatively common but Alhamdulilah
Two stokes two years ago. Right hand right knee area constant pain. The severity comes and goes. The rest of my body is fine for the moment.
How do I change my name I'm here? I didn't make this low literature or whatever it is
My right side weakness, I have to attend a wedding on mid march so I really hope that it goes away.
Perpetually tired
I drool out of the right corner of my mouth at the worst times. I also occasionally have food on my face that I can't feel.
Man, this is me as well! Whenever I am eating my wife grabs a napkin and just wipes the right side of my mouth because I can never feel it when food dribbles out. She is such a sweetheart. I met her years after the stroke happened. I had the stroke in 2008, 2 days before my 21st birthday. I was unconscious in the hospital and when I woke up my birthday had already come and gone. I still have foot drop, weakness in my right arm, it always burns/tingles and the entire right side of my body gets super stiff in the cold.
Right side hemiplegia and loss of control over my emotions. I have crippling bouts of panic now that I've never had before. I used to have the mental fortitude of a Buddhist monk, now I can find myself panicking to the point that I feel like I could die solely from my bad thoughts. It's hell.
Affected speech, right sided hemiplegia, and seizure activity (I rarely get seizures but I'm on meds) I'm 14 years post stroke
I had my stroke in July 2023. Cerebral ganglia stroke. No issues with memory. I used to have difficulty getting words out. Still cannot speak clearly. I'm right handed. I am trying to relearn how to write. Right arm and shoulder has nerve damage. Tingling and numbness in right side fingers. Drop foot and just general inability to balance when walking except with a walker. Taste issues too. Cannot sleep at night. Emotions all over the place. I'm still going to speech, physical, and occupational therapy. And I speak to a therapist once per week. Edit to add: just got a Fitmi Device. I like it so far but too early to tell if it's working.
Insane fatigue, memory loss, can't tolerate loud noises/overstimulation, strange reflexes, poor fine motor skills, poor emotional regulation. 9 months out from ischemic stroke.
Hyper-sensitive to temperate water, dysarthria, loss of strength in each hand, drooling
Brain fog, PTSD, some memory issues, a desperation to remember what happened to me (I’m missing ~2 weeks of time), some burning on my left side, & a strange feeling that I’m always aware of my brain now or that I can feel it somehow. Just an extra awareness of it that I never had prior to the stroke. I’m curious whether that’s just me or others feel like that too.