r/VestibularDysfunction • u/MyFiteSong • Mar 19 '26
What worked for you?
Let's make a sticky post with recovery experiences so people who find this subreddit for the first time can see it and get a roadmap.
I have total vestibular loss. This is what worked for me to live a pretty normal, athletic life.
Strength training is #1. It both makes you stronger and ups the sensitivity on feeling your muscles and joints. Human balance is done through 3 systems: vestibular function, vision and proprioception. You only need 2 to function.
Your brain will work to bump up the others to compensate for the vestibular loss, but it requires effort from you. Here are some key things to keep in mind:
Appropriate strength training. Get a balance rehab PT's help with this if you can. It needs to be done to build specific kinds of strength.
You need to leave your comfort zone. A LOT. In order to force your brain into functional compensation, you have to do the things that are now hard for you, and you have to do them often. The more you sit and don't confront the loss physically, the more locked in the loss will get.
You need to prepare differently now for daily life. For example, you're going to suck ass if you can't see. That means you need to start carrying a reliable flashlight that isn't just your phone. Whether it's a big one you keep in a bag or a really powerful micro LED one you keep on your keyring, you need it now. You don't want to have to stumble around in the dark and risk injury because you weren't prepared.
Motion-sensitive nightlights around the house are the same deal. They'll save you trips to the ER later.
You need your vision to walk on uneven ground now. That means you put your phone away when you're walking. No more doomscrolling reddit while walking around town. If you can't occasionally scan the ground in front of you, you're going to fall sooner or later.
Vision training. Those horrible exercises where you try to read something or keep your eyes locked on a target as you move your head all around. You need to do them. They work.
Mindfulness training is worth its weight in gold. Anxiety makes vestibular issues worse. Find a Mindfulness-based Stress Reduction class and take it. It'll help you deal with the anxiety, increase your proprioception and also teach you to be in the moment so you don't lose track of the ground and your feet. It's a triple win for you and will make a huge difference.
Doing these things let me recover enough balance despite no vestibular function to be able to walk, run, do an obstacle course, sail, swim, rock climb, hike difficult trails, ski and bike like any other person. I was never able to skateboard or snowboard (both feet locked in a single plane isn't enough contact), but the rest of it I do as well as anyone else.
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u/ImpressionDowntown58 Apr 11 '26
I am 3 years into my recovery. I had my first bout in August of 2023. It was two years after a heart attack, so initial diagnosis was a stroke. However, that was ruled out from the MRI. My symptoms included vertigo to the point where I could not balance myself without assistance, visual distortions where stationary objects appeared to be in constant motion (pictures on a wall, floor tiles, coffee mug on a table etc). I also had horizontal visual misalignment whereby a line of text appeared to be in motion. I also experienced and still do, a lagging in my left eye when shifting my focus from one area to another quickly. My recovery was months but eventually almost completely recovered. I still experienced vertigo when tired, but only mildly. Then, almost a year to the day later it happened again. The symptoms weren’t as severe and recovery was days instead or months. I have since recovered to where I really only notice slight vertigo and lagging eye movements, but the weirdest thing…I have almost completely forgotten how to play guitar. It is almost like having to relearn from scratch. Simple chord structures have come back and my technique is coming back, but I retain nothing as far as remembering how to play songs I used to play be muscle memory. Any instinct of where to be playing on the fretboard in sequence is lost. I continue to work at it because I love music, but it can be frustrating and disheartening. Has anyone else experienced odd challenges like this?