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Trauma Induced Stroke Recovery Exacerbation I am looking for any stroke survivors who have experienced anything like this Trauma Induced Stroke Recovery Exacerbation

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I am looking for any stroke survivors who have experienced anything like this

Trauma Induced Stroke Recovery Exacerbation 

After progressing for almost 14 years to what I considered to be a full recovery I fell and fractured my hip on my stroke affected side. To my surprise this led to a return of some of my earlier stroke deficits. Mobility issues I expected; but I did not expect a return of severe balance issues, occasional confusion, nor a return of clumsiness when doing buttons with my left hand. With the return of many of my previously overcome stroke deficits it was not long before a doctor recommended that my Driver’s License be suspended. Sometime later as part of the suspension process I was required to undergo a Driving Assessment during which an occupational Therapist and a professional Driving Assessor concluded;along with my own realization, that my renewed deficits were such that I should no longer be driving.

I thought that this relapse in my recovery was an anomaly until a number of months later when my next door neighbor in Arizona fractured her ankle and also experienced a relapse in her recovery; including some confusion and memory loss.

Having recently completed an initiative in which I had contacted a great many stroke support groups throughout the US by email I sent an email to over100 stroke support groups for which I knew that the email address was correct and 59 groups with email addresses that I had not confirmed; to request their assistance in gathering information regarding these phenomena at their next group meeting by asking their group members if any of them had experienced anything like these phenomena.

 

         

 

 

 

 

By early October 2018 I have received information directly from only two individuals stating that they had experienced this phenomena and a third who had a similar experience

KellyCampbell from Georgia wrote

. I know I had a major setback when I had a disc rupture in my neck. I lost 18 months of progress and ended up in a wheelchair again for almost 6 months.

 

Beth from Michigan wrote

I didn't suffered having a stroke but had a ruptured aneurysm on December 31, 2013. 
At first, I thought everything was fine. I went to rehab. (Speech and OT) and took a psychological testing, and all seemed fine. Yes, I have aphasia and dyslexia, but even with that, I have learned to compensate.
But now, four years later, I want to be tested again. Being out in the world has really messed with my head. Like most, I have sensitivity to light, noise, large groups and lots of action occurring. This is why I'm considered disabled, being I was a teacher.

I have great difficulty falling to sleep and then would sleep a maximum of two hours (I take meds. for this). I have constant ringing in my ears that gets louder as the day or activity goes on.
I have a warm that mysteriously goes numb anytime it wants.
I fidget much more than I use to and find myself sitting in blackened rooms free of noise and anything that can cause activity.
My daughter is my saving grace. She can pick up on my signs of "I've had too much", excessive stimuli.
She states that I start looking at everything, become very confused- can't follow a train of thought, and my right eye starts to droop.
I don't recognize this until it's too late and I immediately need removal to my void.
I'm also very anxious all the time. The ringing drives me nuts. The lack of concentration and inability to focus, makes me and the people around me confused and loose patients.

 

 

 

 

 

A survivor in Arkansas reported

 he was doing well and then had a grand mal seizure and had to relearn everything and had more memory problems.  Each seizure he has sets him back to almost the beginning.

-Medications have caused problems especially after he broke his wrist.

-He has noticed when he cannot exercise, due to a health issue or set back, the weakness comes back.

 

 

 

 

 

 

 

By the end of September,2018 I also received information from 4 groups attesting to knowledge of this phenomena.

1-From a Stroke support Group in Georgia

 

 

Last night at our group meeting, I asked about setbacks when we have a seemingly non-stroke related or illness. The response was overwhelming. It seems that this happens a lot and not just for big things like broken bones. Ear infections, flu, even a cold seems to make the stroke symptoms worse. I know I had a major setback when I had a disc rupture in my neck. I lost 18 months of progress and ended up in a wheelchair again for almost 6 months.

 

The general belief from my group is that our neurological systems are so messed up that even little things can cause big issues.

 

2-from a stroke support group in Virginia

have had a couple of my patients who had a stroke come back for inpatient rehab for other diagnosis such as hip replacement and sepsis and they both have reported that some of their deficits had returned. I think part of it may relate to the medication

3-from a stroke club in Washington

  I tell all stroke patients (when they see me in clinic) that any significant illness or exhaustion will bring a rise in stroke symptoms. In ER’s they call it an amnestic response.

 I explain it as the area of brain that has learned how to do the job of the area that has been harmed as well as it’s own job, essentially becomes tired and reverts back to doing it’s original work.  The answer to this is to rest and take care of the presenting problem. Sleep is the key.

 

4-from Pamela Schmidt from a stoke support group in Arizona

Yes that is common.

 

When another incident happens  your body can have an exacerbation (of stroke symptoms).

 

 

 

 

 

 



 

 

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Do you know if the recovery time after the exasperation of symptoms is the same as it is after stroke? Or, does the brain take more or less time to heal? Thank-you for presenting this to us. I haven't heard of it.   Becky 

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This is an interesting thread and one I will share with my local stroke support group this month. For me, after about 6 months of recovery, I had an incident that happened while taking my daughter to her Dad's family Christmas. I was of course the passenger. It began to rain and it was dark outside (night). Note: I have had pretty severe worsening of stroke effects starting at dusk and throughout the dark...I had a cerebellar stroke and it affects your balance and usually your vestibular area. I had been taught to use my eyes more for balance because my vestibular system had lost its ability to assist in balancing. Ok back to the story. We were in the car on the interstate at night when it began to rain. I already felt blind due to no light and the rain came Doan really hard. It sounded like bullets hitting the car. I could feel it coming...my anxiety was quickly rising. I covered my ears, closed my eyes, uttered screaming noises, and had an immediate severe panic attack. My bf got off the interstate as quickly as possible and we parked under a covered area at a gas station. It took like 30 minutes to calm me down enough to even talk. When I did try to talk I was stuttering so bad that I could barely get out 1 word. All I could do was cry. I was diagnosed with psychogenic stuttering which lasted almost 2 months. I had regressed in multiple ways. Because I was at that time going to outpatient therapy for PT, OT, and ST I just stopped going. I realize now it was really the wrong choice but my anxiety was so high I just felt I couldn't do it. It's been over 3 years now since the stroke. I have had a couple of back injury exacerbation, a hospital stay for being very sick with uncontrolled asthma during an respiratory infection and several colds. Each time I have a worsening of stroke effects and it is more difficult for me to get better...it takes more time. I will say that I have bounced back each time after with a lot of rest. I never thought about something so long after my stroke regressing me...something to keep in mind.

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It is very interesting to read all these stories. I had a major illness at the start of this year and I now realise this is a large part of why my neuro physio has been so careful and concerned about me pushing on with my physical goals this year.  He has mentioned a few times that if my immune system is too strained it's really not good. And I know from experience that something simple like sunburn can be a major trigger for stroke fatigue.  So far, thank goodness, I've not had any major setbacks or recurrence of other stroke symptoms.

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I had a major surgery a year ago. It was a whipple procedure for precancerous lesion in the pancreas. After surgery the anasthesiologist told me after being out for six hours I would see some reappearance of my stroke deficits. He was right. I had to start over with my balance and walking skills. Now after a year of healing and more therapy I am back to where I was after three years of therapy for my brainstem stroke. 

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this is a very interesting bunch of stories.

"

On ‎10‎/‎12‎/‎2018 at 7:28 AM, jsinclair said:

 

 

 

The general belief from my group is that our neurological systems are so messed up that even little things can cause big issues.

That makes a lot if sense but interesting nonetheless.  I see it as your brain worked so hard to start working a new way and when it has to start over from the newest event, it is like throwing a monkey wrench in it. I may be wrong, I'm going to ask my local Neuropsychologist about it 

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On 10/15/2018 at 8:27 AM, rogerwegner said:

 

After surgery the anasthesiologist told me after being out for six hours I would see some reappearance of my stroke deficits.

 

I think that it is fascinating that the anaesthesiologist recognised this factor. I applaud him for warning you. 

Deigh

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Very interesting stuff.

 

Will have to keep this in mind.  If I think back, it probably explains a lot.

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It's a minor data point, but I find that when I get stressed or fatigued some of the stroke symptoms that I usually have under control start to re-appear (Whew!).

 

My vision starts to blur, my left leg starts to drag, thinking its confused, memory becomes far worse, sense of direction disappears, speech becomes difficult.

 

I can quite see that any neurological insult could do the same thing.

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On 10/22/2018 at 1:00 AM, PaulNash said:

 

My vision starts to blur, my left leg starts to drag, thinking its confused, memory becomes far worse, sense of direction disappears, speech becomes difficult 

Snap!

Particularly walking.  I have drop foot (or foot drop. Can never remember correct way around).

When I know people are watching, like going up for communion at Mass, I get stressed about falling over and my walking deteriorates very quickly. 

 

Main difference is that I had no sense of direction before. 

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Aww boo I just realized I didn't get to pose this question to my stroke group. I was unable to go due to extreme exhaustion and deficits after my disability hearing. OMG see see it's like that happened to me that day. Took about 4 days to reset. I'm still planning on asking.

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Tracy that could be linked to your sleep cycle being out of whack as well?

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You could be very right Janelle. I have been super more busy than usual lately. Helping my stepmom, driving her a lot, helping my sister (she is preparing to move), the disability hearing, washing my clothes 😕 (I have to go downstairs...so I procrastinate and then I have to wash everything. It's a job.). You would think after a busy day I would just fall into bed and be right to sleep. 🙄 Oh no, Tracy's brain doesn't work that way. I get probably less sleep then. My body always feels like I've been run over by a dump truck and I usually get bad headaches and well my brain just goes in the closet and shuts the door but doesn't close her eyes. Pain after a rough day can be another reason I think. Oh don't worry I'll make up for it. LOL I don't know if this works. Once I get to sleep I'm a log for a long time. I maybe more like a log from 1-5 days after. Sometimes I don't pay attention if I am being aware of how much I might do or just crazily force myself to do it while feeling like I'm going to keel over. Pretty sure it's a stubborn streak and not the stroke that makes me persist. 😁

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Stubborn is a good thing in some ways (you keep at your therapy even when it feels like nothing is happening) but there are also times when stubborn will kill you. My stubborn streak is a large part of what got me through the first 12 months, but I also had to learn to temper it.

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It has taken me a year and a half to learn that the technical name for this phenomena is Post Stroke Recruedescence (PSR)

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PSR...will definitely forget that, but I must admit I’m glad there is a name for it.

 

I reckon people think we are complaining about nothing, but when you can say ‘I have PSR,’...

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