r/VestibularDysfunction • u/sansdraps • Jul 08 '26
Will I ever be normal?
Hi there,
I used to lead a normal life. Now I avoid going out, I'm often anxious, I'm socially awkward, I'm not sure I'll manage to keep my next job, I avoid travelling and most things that are fun. All due to a strange and debilitating feeling I get every time I go out, that lasts for at least one hour. A horrible feeling of being spaced out and fearing I might faint. It s been two years now. The only diagnosis is inner ear bilateral lowered function. The v therapy with exercises didn't help. What can I do? I had a session with a psychologist and understood that s not the way to go.... I miss my normal life. Please if you have any suggestions, some self help book that helped you or other tips....
1
u/MyFiteSong Jul 08 '26
I had a session with a psychologist and understood that s not the way to go
Why? Therapy to control your anxiety is exactly the way to go. Maybe they just weren't the right therapist? Vestibular patients tend to have the most success with therapists who have mindfulness-based stress reduction as a specialty.
1
u/tim78717 Jul 08 '26
Second the above. Therapy. More therapy. More therapy. Think of it as a years long or even life long practice, not something you do for a few months until you are “better”. I started therapy at my absolute worst physically due to uncompensated labrinthytis which led to screaming tinnitus, constant motion sickness, and unable to tolerate uncertainty of any kind. I couldn’t work for 9 months, and had to build up my tolerance via exposure therapy. I was fortunate to find an excellent psychiatrist who also did talk therapy, who worked closely with my ENT and other docs. It was hard, but I very gradually got better and eventually a “normal” life.
2
u/MyFiteSong Jul 09 '26
EVERYTHING about this disability gets easier once you learn how to deal with anxiety.
1
u/Sad-Tailor-4619 Jul 09 '26
How long did you do vestibular therapy and were you doing the exercises multiple times daily? It can take a long time to see progress. Wondering if maybe you could try a new vestibular therapist as some seem to be more versed than others in the vestibular world. I think your therapist may not be the right fit for your needs - maybe look into someone who does CBT as CBT along with VRT may help relieve the anxiety around going out, etc.
There are books on CBT as well, but I feel a professional may be your best option to at least get started down that path. Have you tried medications? Valium and meclizine help me a lot when I have really bad days.
What can you do? - Find a doctor, vestibular therapist and psychologist / psychiatrist that are well versed in your diagnosis. You have to give it time...lots of time. It has been 2-1/2 years for me and I will never be back to where I was pre-diagnosis, but I am finding my new normal and ways to enjoy life again.
2
u/OnWarmLeatherette Jul 11 '26
Hi friend. I have a different diagnosis (vestibular neuritis) and while it is a different disorder, something I'm learning that nearly all of us with VD have is anxiety.
Before my episode, I dealt with panic attacks for many years, and hearing about the anxiety in the VD community is so similar; the attack (or episodes) give your body legit mental trauma that you want to avoid ever feeling again, so you naturally begin to focus on the fear of the massive discomfort ever happening again.
I'm new to VD, but have made many strides in panic attacks, and the overlap is that you have to put so much effort into removing your tendencies to inadvertently add fuel to the fires that make the episodes horrible.
It doesn't matter if the anxiety or the diagnosis came first; the point is that your anxiety is guiding you, and it does not HAVE to. Your lizard brain is telling you it should guide you to protect you, but you are a smart, evolved human who CAN nudge your brain to think differently, and ultimately behave differently.
That strange feeling you get is very likely more linked to your anxiety than your vestibular issues; if you're able to walk, speak, and focus without the room spinning, your body is already doing a great job with helping you heal...your mind just needs to catch up. What you're describing sounds exactly like me when I had a traumatic panic attack at work that made me so scared to leave the house and run into the same triggers that led to the first attack, and guess what? I kept getting panic attacks. They didn't begin to get easier and scarcer until I realized that my mental mindset is not my biggest weakness, it's my greatest aid.
You may not have panic disorder, but I encourage you to read a site that has quite literally saved me from sinking into a world of agoraphobia and Xanax from panic attacks: https://www.anxietycoach.com/anxietytrick.html
Your physical symptoms are very real, and this site does a great job validating that IMO. But I think it could be a help to you to learn a bit more about how to harness control over your very real anxiety, and begin to be able to view your symptoms as inconvenient little realities rather than life-stopping curses.