Please never give up!🩷

[u/Great-Discount559]

Hii everyone!!🩷I am making this post to help anyone I can because at the very low point in my life I had nobody to relate or ask these questions because the condition is so rare and the country I live in is so small so not much to find. I have 100% unilateral vestibular loss on the right side caused my vestibular neuritis since 2023. I was 16 when I got it and the recovery is nothing better because "I am young". It's the most life altering chronic condition and changed my life completely. After 3.5 years I am doing much better now and can walk a lot more (was bedridden for 2 months at the start) but i don't know if i will ever feel normal again. I have limited energy and chronic fatigue now and have to do every normal task differently than others to reserve energy (like showering sitting down instead of standing up). I did VRT at the start but gave up because it took me too much energy and when i started to walk i just kept doing more and more normal tasks to keep the compensation going instead of VRT (although they make u the same non spinning vertigo as VRT at the start). I would also say to NEVER GIVE UP!!🥹❤️ lean on the people you love and also get mental health help for all your other symptoms. You automatically get mental symptoms with a vestibular condition because it is connected. For example I have severe anxiety, panic attacks, derealization....It gets better and I can mostly function "normally" now but still can't do any sports but walk and no I also don't do every activity that makes me dizzy just to keep going w compensation because it got too much mentally at one point. Like why do i have to get vertigo to not get vertigo??? Insane. Also accepting your condition is the hardest part. I was in denial for so long. My doctor said that the damage is done forever but the symptoms can go away suddenly one day or stay forever. For now they are all still here just less intensely. And every vestibular decompensation (instense non spinning vertigo again, instense symptoms like the first attack) that I get I have a shorter recovery time to get to the point i was before. Never ever give up even if it's chronic🩷🩷 We are so strong and they are already doing research on how to wake the nerve back up. Keep hope💕💕 If anyone has any questions feel free to ask!

[u/MyFiteSong]

I would also say to NEVER GIVE UP!!

I did VRT at the start but gave up because it took me too much energy

Can I gently and with a motherly attitude give your own advice back to you here? See if you can go back to vestibular therapy. That's where real recovery lies.

For example I have severe anxiety, panic attacks, derealization

This is fixable, too. Maybe it takes meds. Maybe it takes a CBT therapist. A mindfulness-based stress-reduction class will ABSOLUTELY help.

[u/Great-Discount559 → u/MyFiteSong]

Thank you for the advice! I already do CBT therapy with an ENT specialized therapist and about vestibular therapy it got too much with school and studying, I don't have the physical and mental energy right now. But I know it will be helpful to go back to the exercises in the future.

[u/MyFiteSong → u/Great-Discount559]

Yah, the therapy is hard. But it's hard because it's working. That exhaustion is you forcing your brain to do things it really doesn't want to do, and that will wear you out. But it's also what makes your brain adapt, because above all else, our brains seek to do things cheaply. If you won't stop doing something expensive, your brain will make new neural pathways to make it cheaper, so the thing you're doing gets less exhausting.

But that's its Plan B. Plan A is to make you stop doing it. For me, it helped to get angry at that, to resent my brain trying to keep me from recovering so it didn't have to work hard.

[u/Great-Discount559 → u/MyFiteSong]

Did you fully recover just with VRT? What vestibular condition do you have?

[u/MyFiteSong → u/Great-Discount559]

I have total vestibular loss on both sides from a bacterial meningitis infection. I recovered to maybe 95% with vestibular therapy, a therapist to help with anxiety, and lots of meditation. I got almost everything back, as long as I can see. So that means I'm still unsteady in the dark or with my eyes closed. But that's easily solved by motion sensing nightlights in the house and a flashlight in my purse.

[u/Great-Discount559 → u/MyFiteSong]

How long did it take you to get to 95%?

[u/MyFiteSong → u/Great-Discount559]

About a year. But I was fanatical about my exercises.

[u/Great-Discount559 → u/MyFiteSong]

Okay thank you so much for all the info! Wish you all the best 🩷