Thank you once more. I used to think I was being lazy. Even though I was truly exhausted…. It’s good to know it’s normal. I even find taking a shower is enough to wipe me out for a day. Fortunately I’ve managed the art of getting completely washed without showering every day. People really don’t know what sensor overload does to a stroke survivor.
Yes, Sheilagh. We have to battle with ourselves AND battle to get others to understand. It should get easier overtime as we adapt and adjust. It does take time, though! All the best to you and thanks for watching me drone on yet again 😂
More power to your elbow. Good explanation and I am still suffering this nine years after my injury. I have more control than I did in the early days but it still catches me out from time to time. You are right, pacing yourself is the secret. I get frustrated having to repeatedly explain it to the same people, including family, on almost a daily basis. Uphill struggles continue but I am still breathing and most definitely not giving up yet. Life is good once you have accepted the terms and conditions 😂. Best wishes to you.
Yeah, I get that, Chris. I'm now 9 and a bit years and showers still take it out of me. Such huge effort. However, I no longer have to lie down for an hour after having one. Thanks for commenting and take care
I’ve never met someone with my same experience. I wasn’t ever diagnosed with a stroke but this is what I have struggled to come back from and happy to report that I’ve improved as well. I can follow conversations again. My “stuck” episodes (as my family and I have come to call them) are far less frequent. It’s been five years and now I’m looking to get back to work part-time and remotely from home. It feels so validating to hear someone else have gone through what has been difficult for me to explain or understand as to why it has happened. Thank you so much for sharing your experience!
'Stuck episodes' - I love that description! It just shows how each and every stroke is quite unique but we're generally treated in the same way by medical professionals. I'm delighted to hear you're still making improvements and you will continue to do so. They may be small but they will happen. It sounds like you're at the stage whereby, in order to notice these improvements, you need to look back at where you were 6 or 9 months ago. I shall be 11 years on in May and things are still happening, small things, but improvements. Thanks for commenting and keep plugging away. All the best, Andy
@@BrainAttackMusic It is so reassuring to hear that the improvements just keep coming however small! I’m so glad you are continually improving. I was wondering if you can relate to something else I still experience that wasn’t mentioned in your video: Do you find that you used to be able to have an inner voice/monologue and now everything is so much more quiet? I used to always be thinking, planning and analyzing and now I don’t hear that voice the same way. I still obviously think but it seems to be more in the background where I can’t hear it in my mind. It’s hard to explain but I just can’t preplan what to say or do. I just do or just say things now, like losing a filter perhaps. I have problems with over sharing now. I used to be able to talk myself out of not sharing things.
That's fascinating. I haven't heard of that or experienced it myself. Having said that, the brain is a mysterious thing. We have a brain injury and as the brain does everything then any outcome is possible. Pre stroke I have been caving and other occasions when I have been in enclosed spaces. Not a problem. Post stroke, I have really bad claustrophobia. Only discovered it when I had a meltdown in an MRI. Even thinking about an enclosed space makes me sweat. I know many folk have their personalities changed, develop anger issues, etc.
@@BrainAttackMusic You are fascinating to talk speak with! I’m going to go watch your other videos. The claustrophobia is something else that I experienced too but only a few weeks later in an MRI machine, too. Not really anything after that experience, but I like to be alone and not be in any crowds so maybe that is somewhat claustrophobia related? Before any of this happened, I was very social and enjoyed adventurous things. I was/am a counselor and art therapist. The MRI showed I had scars on my frontal lobe like small blood vessels had been strangled and died is what the neurologist told me. That is the only explanation that I’ve ever received and never was told if that meant I had a stroke. Although in my medical records one person mentioned history of stroke, but I had wondered if that was an error or uncertain. I still wonder and wish I had asked the neuro who gave me the MRI for clarification, but I was not able to think well at that time.
@@k.mcdonald1960 Yep, we have to accept the medical advice we're given and we're not in the right state of mind to process, absorb and ask questions. Another of my videos (BEFAST) looks at research that shows many strokes are misdiagnosed as a very narrow set of criteria is applied by the medics. When I had my stroke, my wife called the paramedics who said I had labyrinthitis (an infection of the ear) which is why I had bad vertigo and nausea. They gave me an ant nausea jab and left. My GP did a house call 6 or 7 hours later, diagnosed a potential stroke and I was blue lighted to hospital. I remember getting to the hospital and then my next memory was coming around in a hospital ward. This was actually 5 days later! I have done another video about this experience. Our post stroke worlds are very strange! Thanks again for watching and commenting.
It rules my life. Half a day of thinking used to take me 3 days to get over. I still only last a few hours a day but f I wake up at 8:30am and stop at 12pm and rest till the next morning I am usually good for another 3 hours. My vision was also damaged so I think a lot of my fatigue is from that
You have my sympathy. It's so difficult for anyone to understand if they haven't experienced it themselves! It's all about finding a routine that works for the individual. Thanks for watching and all the best to you. Regards, Andy
I recognise many of the symptoms you describe following craniototmy to resection a very large tumour two years back. My carry over symptoms continue to evolve making what i did previously very challenging. Awareness is everything and because someone is upright and functioning it dosnt mean they have a 100% recovery.
Hi Pravina. If you look at my earlier videos I explain in more detail, (th-cam.com/video/PnE7z87JDp4/w-d-xo.html) but my cerebellar stroke was in May 2013. I developed hydrocephalus and needed emergency brain surgery to decompress my skull. I left hospital in a wheelchair with double vision and severe vertigo and no grip on my left hand. My eyesight returned to normal but took about a year to do so. I still have bad vertigo so walk with a stick (short distances). I have bad neuro fatigue (my nemesis) and can only do anything for about 20 to 30 minutes before my brain melts!! The only sensory deficit I have is, if fatigued, I struggle with noisy environments. For some bizarre reason, I have also developed severe claustrophobia. Thanks for commenting and for watching. All the best, Andy
Unfortunately not. My stroke was May 2013 and I still can't walk very far and am unable to do anything for more than about 30 minutes or so before I am overwhelmed with fatigue
![[DRIP] ‘Woke Up In Tokyo (RUKA & ASA)’ PREVIEW](http://i.ytimg.com/vi/QN44lcR_VkI/mqdefault.jpg)
A "Brain Freeze" is a great way to describe Neuro Fatigue...
Thank you, Tom!
Thank you once more. I used to think I was being lazy. Even though I was truly exhausted…. It’s good to know it’s normal. I even find taking a shower is enough to wipe me out for a day. Fortunately I’ve managed the art of getting completely washed without showering every day. People really don’t know what sensor overload does to a stroke survivor.
Yes, Sheilagh. We have to battle with ourselves AND battle to get others to understand. It should get easier overtime as we adapt and adjust. It does take time, though! All the best to you and thanks for watching me drone on yet again 😂
I recognise all of this and am so glad to hear you explain it all so well. Thankyou so much!
Thanks for watching and commenting, Sharon x
More power to your elbow. Good explanation and I am still suffering this nine years after my injury. I have more control than I did in the early days but it still catches me out from time to time. You are right, pacing yourself is the secret. I get frustrated having to repeatedly explain it to the same people, including family, on almost a daily basis. Uphill struggles continue but I am still breathing and most definitely not giving up yet. Life is good once you have accepted the terms and conditions 😂. Best wishes to you.
Yep, totally agree with everything you say. It's tough for other folk to 'get it' when they haven't experienced it. Look after yourself. Cheers, Andy
sums up my fatigue after my stroke to a tee
Thanks for commenting and subscribing. Welcome! I hope there's something of interest for you amongst my other videos
Thank you so much for explaining this better than any doctor!!
Very kind of you to say that. True understanding comes from personal experience, I think
As ever a vital contribution to stroke survivor recovery. Informative and well presented.
Thank you, David. Much appreciated
Getting to the bathroom and taking a shower is a big effort for me 2years since stroke. Left side is weak
Yeah, I get that, Chris. I'm now 9 and a bit years and showers still take it out of me. Such huge effort. However, I no longer have to lie down for an hour after having one. Thanks for commenting and take care
I’ve never met someone with my same experience. I wasn’t ever diagnosed with a stroke but this is what I have struggled to come back from and happy to report that I’ve improved as well. I can follow conversations again. My “stuck” episodes (as my family and I have come to call them) are far less frequent. It’s been five years and now I’m looking to get back to work part-time and remotely from home. It feels so validating to hear someone else have gone through what has been difficult for me to explain or understand as to why it has happened. Thank you so much for sharing your experience!
'Stuck episodes' - I love that description! It just shows how each and every stroke is quite unique but we're generally treated in the same way by medical professionals. I'm delighted to hear you're still making improvements and you will continue to do so. They may be small but they will happen. It sounds like you're at the stage whereby, in order to notice these improvements, you need to look back at where you were 6 or 9 months ago. I shall be 11 years on in May and things are still happening, small things, but improvements. Thanks for commenting and keep plugging away. All the best, Andy
@@BrainAttackMusic It is so reassuring to hear that the improvements just keep coming however small! I’m so glad you are continually improving.
I was wondering if you can relate to something else I still experience that wasn’t mentioned in your video: Do you find that you used to be able to have an inner voice/monologue and now everything is so much more quiet? I used to always be thinking, planning and analyzing and now I don’t hear that voice the same way. I still obviously think but it seems to be more in the background where I can’t hear it in my mind. It’s hard to explain but I just can’t preplan what to say or do. I just do or just say things now, like losing a filter perhaps. I have problems with over sharing now. I used to be able to talk myself out of not sharing things.
That's fascinating. I haven't heard of that or experienced it myself. Having said that, the brain is a mysterious thing. We have a brain injury and as the brain does everything then any outcome is possible. Pre stroke I have been caving and other occasions when I have been in enclosed spaces. Not a problem. Post stroke, I have really bad claustrophobia. Only discovered it when I had a meltdown in an MRI. Even thinking about an enclosed space makes me sweat. I know many folk have their personalities changed, develop anger issues, etc.
@@BrainAttackMusic You are fascinating to talk speak with! I’m going to go watch your other videos.
The claustrophobia is something else that I experienced too but only a few weeks later in an MRI machine, too. Not really anything after that experience, but I like to be alone and not be in any crowds so maybe that is somewhat claustrophobia related? Before any of this happened, I was very social and enjoyed adventurous things. I was/am a counselor and art therapist.
The MRI showed I had scars on my frontal lobe like small blood vessels had been strangled and died is what the neurologist told me. That is the only explanation that I’ve ever received and never was told if that meant I had a stroke. Although in my medical records one person mentioned history of stroke, but I had wondered if that was an error or uncertain. I still wonder and wish I had asked the neuro who gave me the MRI for clarification, but I was not able to think well at that time.
@@k.mcdonald1960 Yep, we have to accept the medical advice we're given and we're not in the right state of mind to process, absorb and ask questions. Another of my videos (BEFAST) looks at research that shows many strokes are misdiagnosed as a very narrow set of criteria is applied by the medics. When I had my stroke, my wife called the paramedics who said I had labyrinthitis (an infection of the ear) which is why I had bad vertigo and nausea. They gave me an ant nausea jab and left. My GP did a house call 6 or 7 hours later, diagnosed a potential stroke and I was blue lighted to hospital. I remember getting to the hospital and then my next memory was coming around in a hospital ward. This was actually 5 days later! I have done another video about this experience. Our post stroke worlds are very strange! Thanks again for watching and commenting.
9:55 when your loved one gets fatigued. "Brain freeze".
Thank you. Valuable explanation.
It rules my life. Half a day of thinking used to take me 3 days to get over. I still only last a few hours a day but f I wake up at 8:30am and stop at 12pm and rest till the next morning I am usually good for another 3 hours. My vision was also damaged so I think a lot of my fatigue is from that
You have my sympathy. It's so difficult for anyone to understand if they haven't experienced it themselves! It's all about finding a routine that works for the individual. Thanks for watching and all the best to you. Regards, Andy
Thanks for your message, this is very true on a daily basis for those like myself who has a Mind Brain Injury ( concussion) .
Thanks for commenting, Erica. I hope you're well
Stay safe everyone a new way of living after being active,hard to except but keep going
Thank you!
Thanks for watching and I'm pleased it was helpful. Regards, Andy.
I recognise many of the symptoms you describe following craniototmy to resection a very large tumour two years back. My carry over symptoms continue to evolve making what i did previously very challenging. Awareness is everything and because someone is upright and functioning it dosnt mean they have a 100% recovery.
It's the 'invisible disability/injury' situation, isn't it? Thanks for commenting and all the very best to you 😀
So informative. If you dont mind me asking, how long ago did you have your stroke? What damage did you suffer? Did you suffer sensory deficit?
Hi Pravina. If you look at my earlier videos I explain in more detail, (th-cam.com/video/PnE7z87JDp4/w-d-xo.html) but my cerebellar stroke was in May 2013. I developed hydrocephalus and needed emergency brain surgery to decompress my skull. I left hospital in a wheelchair with double vision and severe vertigo and no grip on my left hand. My eyesight returned to normal but took about a year to do so. I still have bad vertigo so walk with a stick (short distances). I have bad neuro fatigue (my nemesis) and can only do anything for about 20 to 30 minutes before my brain melts!! The only sensory deficit I have is, if fatigued, I struggle with noisy environments. For some bizarre reason, I have also developed severe claustrophobia. Thanks for commenting and for watching. All the best, Andy
Makes you definitely not yourself, I deal with it everyday
Severe TBI, I have a lot of Energy and suddenly? It switches and I turn into something else
It’s driving me crazy
Hi how are you now.back to normal life?
Unfortunately not. My stroke was May 2013 and I still can't walk very far and am unable to do anything for more than about 30 minutes or so before I am overwhelmed with fatigue
4:26 neurofatigue