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Old 09-04-2020, 08:10 AM
BurritoWarrier BurritoWarrier is offline
Junior Member
 
Join Date: Sep 2019
Posts: 45
3 yr Member
BurritoWarrier BurritoWarrier is offline
Junior Member
 
Join Date: Sep 2019
Posts: 45
3 yr Member
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The last post Klaus made on the subject said the following:

"The best I can do for you is an anecdotal case study of one (that being me ). For many months I was so sensitive to any head movement, vibration or jolting that I had to wear specially cushioned sneakers to walk anywhere or even each step from walking was too much of a jolt.

I have improved a lot since then and continue to do so. I even ran a few steps the other day, and it seems to have been ok. And speed bumps in a car are now ok as long as I lean forward. So if she's like me, it will improve and won't limit her life as much as it now might appear.

I expect it to limit my life in terms of the lifestyle choices I make. I have learned to avoid activities that might jolt me, and intend to continue doing so even if I feel better in the future. I would advise your daughter to plan to do the same, this isn't something she'll want to go through again. There are plenty of fun and worthwhile activities which don't involve head jolts."


I had a similar experience my first bought with this. If you can avoid any setbacks (and you don't hide in your house all day, either), it seems possible for this symptom to kind of improve "on its own."

I would imagine it depends slightly on the cause. I know there are folks on here with neck issues that have needed to be addressed, so it's important to see a good doctor to figure out what is actually going on. For me, it was more of a vestibular thing that was actually diagnosed as migraine-related (see some of my other posts for more detail on that).

What I have found helps this (outside of migraine medication--which I have yet to be successful with, but I'm told by my docs it's possible to control it that way) is what one of my neurologists calls "targeted exposure", which is basically just making yourself a LITTLE bit uncomfortable every day, but not so uncomfortable that it triggers a 6-month setback in symptoms or anything like that.

I have never had a PT who has been able to help me properly with this because, although it's a vestibular issues, they are generally trained to treat the VOR response and issues with turning your head. This is an issue with moving your head lineally, which is a separate organ. There are two in each ear, actually (the utricles and saccules). I found it helpful to read my old college anatomy textbook to understand how they work. It made me understand the sensations I was feeling better.

Anyway, I ended up making up my own "PT" exercises that I've found help me improve much faster than waiting for it to get better "on its own". It's kind of been a progression. I was REALLY sensitive about two years ago, so I started with just squatting up and down slowly (and also lunging forward and back). This felt like an amusement park ride, at the time.

For me, I would do this as fast as I could tolerate (maybe 10-20 times each) until the sensations became painful. I didn't want the pain to linger too long after I was done because I found I wouldn't improve as much day-to-day if it did. Really, what I was trying to do was teach my brain that it needed to get more comfortable with larger amounts of movement.

It was hard at first because I wasn't really comfortable with what my limits were, and I was always so nervous that I pushed too far. You get more confident over time--after you have a few moments of panic where you're sure you triggered a setback and then the symptoms never come. Then you're like, "Oh, I can push at least that hard and know it will be fine."

I wouldn't always notice improvement each day, but it was always noticable week-to-week. Eventually, the squats and lunges got more aggressive and turned into jumps. When jumping on the ground got easier, I bought a small trampoline. I also bought a treadmill to work up to different walking speeds and inclines steadily.

Another thing I noticed, just in general, was that just avoiding all movement made it worse. Like, if I just sat on the couch all day and never went anywhere, I would never get better (and would even regress). This is all consistent with what the doctors have told me will happen with sensory sensitivities related to migraine.

Not sure if this will help! Everyone is different. That was just my experience with it.

Best of luck!
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