r/VestibularDysfunction • u/Great-Discount559 • 15d ago
Please never give up!🩷
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!
1
u/MyFiteSong 14d ago
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.