Hi All,

I am writing this on behalf of my fiance Sarah, who is in her second bout with PCS (Or, more likely, one experience with a few years of good quality of life in between). We are seeing a good team of DOs, neuropsychs, vestibular PTs, etc. in the Twin Cities MN area but they really haven't been able to provide much insight on one particular symptom - her self-described sensitivity to motion. She describes it as if her "accelerometer is off," or that normal movements in walking, stairs, feel as if she is on a roller coaster. This is specific to linear movement, not rotation or spinning, and is a different feeling than dizziness. This makes riding in a car, taking walks outside, or doing other normal activities very painful.

Her first time through this she had a similar issue, but also had a number of other problems that took a long time to resolve, such that the motion sensitivity had gotten better by the time she was ready to rejoin the world. However, she said things never fully felt normal afterwards. She did not ride a bike, go skiing, or do much jumping for this reason.

She suffered a few setbacks from increasingly smaller bumps and jolts, and now has been extremely sensitive to any movement since the last one in March. It has improved since then but VERY slowly, and is compounded by the fact that it is very easy for her to overdo things and get a multi-day headache as a result. She needs to be very cautious, which makes it hard to regularly push her limits as the doctors suggest. However, I don't believe this is anxiety-related. She does have some situational anxiety but I do not observe it in this case.

We have a few questions, looking for insight from anyone on this forum who has experienced something similar.
1) Have you experienced this specific symptom? (quick movements causing headaches and physical pain, feeling like the brain amplifies the perception of normal movements)
2) If so, have you found any providers that truly understand this, can explain why it happens, and have specific treatments or therapies for it?
3) What strategies or exercises worked best? Sarah struggles with riding the line between needing to push that discomfort and going too far resulting in headaches and setbacks sending her months backward on her trajectory.

We are confident that she will recover in time, but the progress this time around is so slow that it has been discouraging. We are not in the medical field but both come from a physiology background so it has been frustrating to work with providers that don't seem to understand or have reasons for this issue, as it is most helpful for her/us to be educated about various her various treatments.

Thank you!
Dave

Has she every been put through the Epley Maneuver?

Has anybody suggested any gentle care of her upper neck, C-2, C-1, and above?

These subtle upper neck injuries do not usually show on normal imaging or manifest pain. But, they can challenge how the nerves that emanate from this area function. Inflammation in this area can cause a myriad of challenges.

Hi Mark,

She hasn't gone through the maneuver but did not test positive for vertigo - her symptoms don't involve any spinning or rotational dizziness so this seems unlikely.

She had several neck/head massages, alignments, and therapies in her last major bout with PCS with minimal success. Nothing this time around but it's something we can look into.

Thanks,
Dave

If some obvious triggering event didn't bring this on, might be good to get a whole body/health work up, just in case it is something new and not concussion related..

[makes it hard to regularly push her limits as the doctors suggest]
If she can find the line of no symptoms increase, then don't push past it..
Let your body tell you when to move forward with activities..
Doctors don't always know what is best for each person..

"She had several neck/head massages, alignments, and therapies"

This comment is meaningless with a discription of the therapies.

Is head massage Cranial Sacral Therapy? That is quack medicine.