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).