Treating Sensory Changes After Stroke According To Science

[@zeezeejax8560]

3 years post stroke in march! Life has changed, and finally adjusting. It was roughly 3 - 4 months ago. Your videos have definitely helped me adapt to my new brain. I still get a full brain shutdown ( so i call it ) when i get overloaded and can no longer think, or process information ( i go dumb ) i call it. I get overloaded with sight and sound easily, but learning my triggers and im still learning when to move away from stimulation and situations if i can. My emotion control has gotten better too. Its been such a slow road, and i dont know if i can call it recovery at this point, just adapting to the new me. Someone mentiond driving. I also get brain shutdown from stimulations while driving. Living in a city makes that hard. I do alot better in country settings. Again thanks for the videos! Its nice to know im not alone or weird for having these changes and adjusting life around me to be part of it.

[@Jennifer_63165]

@@zeezeejax8560 you are not alone! I wish someone would have told me about the sensory changes. I shut down too! I say Jennifer.exe doesn't work. But that happens to me when my system gets overheated or overwhelmed when too much happens. But I'm just learning about that and what can help me like watching these videos! They really help!! Good luck 🍀 on your journey!!!

[@jonellhuger2511]

Thank you so much for the information! I am grateful for you!

[@bobber870]

As always, you've touched on SO many aspects of what I'm going through yet, every single thing is helpful 👏

[@PostStrokeOrg]

@bobber870 Hey Bob! I'm so glad! Let me know if you try any of the strategies and how they work for you 😊

[@bobber870]

I never realized sensory overload would be such a struggle in daily life after my strokes. I've purchased noise canceling earphones & actually wear earplugs at the same time for long travels in the car or at the movies. I'm looking into buying sunglasses with side style blinders to help when in the car (only as a passenger now 👍) to prevent over stimulation from seeing traffic as my depth perception has drastically changed now which leads to falls 😳 Also I'm using a compression sleeve on my affected arm to help suppress that "wild fire ant" pain sensation tingling that goes 24/7 🐜🔥 It took some testing to find the right one!

[@PostStrokeOrg]

@bobber870 Thanks so much for sharing! This may be helpful for others to read. The compression sleeve for your arm pain sensation is a new one to me, so thank you for letting me know 😊 I'm so glad that helps. ugh fire ant pain sounds awful

[@msmeiia]

Dear Elyse! What wonderful, helpful things you have for us! Blessings to you...❤ 🙏 You make every video a blessing for us! 🙏🙏 Much love and gratitude for you always! ❤

[@PostStrokeOrg]

Wow, thank you so much as always for your kind words and helping to support the channel❤️❤️

[@nigelprice3929]

Hi Elyse, cpsp on the back of a thalamic stroke has no cure and for some, includes pretty much all the sensation topics you mentioned. There are currently pilots for DBS in Germany, UK and the US. These pilots are looking at enhanced battery output capability rather than a simple steady connection. I am not sure it's stated but it is thought that if DBS is successful for minimising cpsp (expected success rate unfortunately starts at zero and upwards) that the sensation issues will be minimised as well as the pain. Its thought that the increasing pain in cpsp is down the brain searching for the info it needs (as you said in the video) and as a result, it can instruct the body to increase the volume of nerve signals to find what it's after which in turn increases pain. Some of the nerve signals may be being sent to the pain receptors in error. A good example would be touch being interpreted as pain. For cpsp, around two thirds of people are hyper sensitive to cold which can generate severe pain across the affected side. Cold is the biggest driver of cpsp by far for most people. Warmth is one way to minimise pain. Perhaps the body relaxes and doesn't send as many nerve signals, which leads to less pain/sensations/overload. Hydrotherapy might be one you could have included to minimise unpleasant sensation ? Bodies also tense with pain which increases signal...so conscious relaxation? We have just started a forum in the UK with the idea that stroke survivors and carers can share real life information with other interested parties. It's been created by people who have had a stroke. The forum can be found in Google by searching for Stroke Improvement Group. You would be very welcome. We have some people signed up from the US already. Posts on Facebook seem to suggest that CPSP and over sensitisation is not very well understood. It is early days on the forum so there might only be a post or two on some of the topics. Hope this is of use to you. All the best

[@thefreestylefrEaK]

I had an ischemic 4 months ago. My left side was slightly weakened but i have full use of my left arm, hand and leg now. I notice at night when I sleep if both my hands are outside the blanket my left hand can turn ice cold while my right is warm. It takes 10 minutes to warm my hand back up. The odd thing is my left hand can sense temperature differences and touch.

[@PostStrokeOrg]

@thefreestylefrEaK Thank you for sharing! Sensory issues vary so much from person to person ❤️

[@derekterrell3465]

I'm at 10 months how did your arm come back did you just wake up and it worked or what? Still can't use mine yet can close my hand can walk with a quad cane ,I want mine both back so bad

[@mattbeeker]

Thanks for the great info! I'm coming up on 2 years post-stroke and still experience some sensory issues, the biggest of which is driving on highways. It's hard to describe, but the best way to think of it a claustophobic panic feeling that rises up at a moment's notice. I recently drove my longest distance of about 3 hours and did fine. But I found the sensation returns at random times while just doing a small drive from one town to another. Our children are grown and live in far away cities and although I would love to drive down there and visit any time, there's a feeling of dread when I think about getting on crowded highways. My wife offers to drive, but I do not want to keep "ducking out" on driving all the time. Pre-stroke I could drive all day long without a care in the world. I know it's minor and I'm grateful to have nearly fully recovered from my stroke, but if anyone has this issue, or might know how to work through these panic episodes as they happen, please let me know. Thank you again and keep the videos coming!

[@PostStrokeOrg]

@mattbeeker Thanks so much for the kind words and sharing your experience with panic while driving. I'll be really honest, I went through about 5 years where my panic disorder was at its worst (not after a stroke, purely mental health issues). Driving was a huge trigger for panic attacks for me. I should have seen a mental health therapist and would definitely recommend that to you. However, I learned about CBT strategies and breathing techniques. These really, really helped me and my panic disorder is mostly under control now ❤️ You may also find my recent video on breathing techniques helpful!

[@dpaul5457]

I Affirm that feeling. I have never before experienced panic. It's less now a few years later.

[@joshporter8286]

Thank you elyse. I found my sesory changed later in my recovery. My arm gets sensative to our fan on summer days it feels like sharp daggers. I found if I put a hoodie on im good. As always you are wise and beautiful.

[@PostStrokeOrg]

@joshporter8286 Of course! Thank you for the kind words! I'm glad you found a solution that works well for you 😊

[@Lil-Mike-55]

TYSM dear. I can unfortunately spot-on relate as a stroke survivor and bedridden for almost 5 years. I'm hypersensitive.🙏🏻

[@bellaspirit]

I've got a feeling these are going to be really helpful. Just what I've been looking for. If I can find this again I'll let you know how it goes. Thanks 🎉

[@PostStrokeOrg]

@bellaspirit Please keep me posted! ❤️

[@Jennifer_63165]

Thank you so much for this video! When I first got out of the hospital 🏥 for like 6 weeks, I couldn't talk or was just relearning to walk. So I wasn't steady on my feet for very long. I wish someone would tell me about this sensory changes. I went out to a restaurant, I couldn't talk so how was I to order, I'm a picky eater so how was I going to tell the customization, I'm seeing differently- is this normal, normal smells for a restaurant but so overwhelming, it's busy on a Friday night so I'm both auditorily and visually overwhelmed..... everything happens at once and I ran out of the restaurant crying, I couldn't do it!!! I didn't know why this had bothered me bc no Dr or nurse mentioned that point! I thought I was going crazy! I know that I wasn't born with this condition but I watch videos that help people with autism or ADHD. But my 🧠 brain is forever changed! Would you call that neurodiverse? And could you make a video on Executive functioning skills and who helps with this? Bc I'm having trouble making decisions, overthinking, don't do well with change, planning....I need some annual, monthly, weekly, daily goals bc if you don't have goals you don't know where you're going. Just a 🚢 boat afloat with no destination! So I want to have all of those, but I have no idea how to go about getting them or working on Executive functioning skills. And when I get some semblance of daily tasks, something always pops up, more urgent and now I have to take care of that, which results in me not getting all my tasks ✅ done and I feel bad about myself and it doesn't work.. so I resort going back to sitting on my chair and watching KZbin bc i feel I can do this all by myself and I can just stay there and avoid life, things that upset me! I do NOT do well with changes or unexpected events! I know if I stay in my comfort bubble, nothing happens and I won't grow....and I WANT to grow and participate in my life!

[@PostStrokeOrg]

@Jennifer_63165 Of course! I'm glad you found it helpful. Part of the reason I make these videos is to help validate survivor's experiences, especially the aspects that aren't often talked about ❤️ Your brain is different now! And that's okay. All brains are beautiful 🧠🤩 Thank you for the suggestion on executive functioning! It can definitely be a huge issue. Be assured, though, the fact that you want to grow and participate is a huge first step! It's really hard to start if you don't have the motivation in the first place ❤️ One simple thing you can do is set one, SMALL, achievable short term goal. Don't overdo it or overthink it. Just one 😊

[@bensturges7412]

Is balance a sense? I can become disoriented and then lose my balance. Children running around my legs and me not wanting to run into them is one cause of disorientation. I use a balance board religiously, but other suggestions are welcome.

[@PostStrokeOrg]

@bensturges7412 Balance relies partially on vision so it is integrated with our sensory system!

[@arnavrajput8120]

I aint got any senses in my hand going good , even my fingers aint opening after a year 😞

[@thefreestylefrEaK]

Keep faith and working on it, it can still improve. Best wishes.

[@derekterrell3465]

Same here I'm at 10 months, still walk with quad cane I've worked hard too hand can close but not open yet can lift arm a little bit feels like a 299lb weight is attached I'm 44 experienced stroke in February last year after surgery,I was in hospital when it happened so I don't understand why it was so bad had heart surgery then got 2 clots in brain got rushed to surgery to remove the 2 aneurysms, hope you get better as soon as possible like now, nobody really understands unless they have had one

[@hemasookram4655]

Overstimulation is an issue for me. I avoid ppl and busy places now .

[@cg167]

I tried mirror therapy in my own OT, but I forgot about it for some reason. I'm going to a thrift store tonight, so will buy a cheap mirror.

[@Mooregirl]

Thanks again as usual. I must have proprioception, I feel like I’m traveling through space like in the matrix. I have hypersensitivity with light and sound. I just did a video on blue light blocking sunglasses and glasses that helped me out in the Las Vegas Sun.❤tfs

[@PostStrokeOrg]

@Mooregirl Of course! Your phrasing, "feel like I'm traveling through space in the matrix" made me chuckle 😊 but I know that it's no fun to experience. I'm so glad that you found sunglasses/glasses that have been helpful for you! Thank you for sharing ❤️

[@Mooregirl]

@ I also go to bounce therapy weekly

[@Mooregirl]

Not sure what is phrasing🤷🏽‍♀️

[@PostStrokeOrg]

@Mooregirl Just how you described your sense of proprioception! 😊

[@msmeiia]

Thanks!