Hi everyone, my name is Carmen and I’m posting on behalf of my daughter, Mia. We live in Maryland. Mia is only 18 and has been struggling with what we believe is PPPD for about four months now.
It all started after she had the flu in January. She never fully recovered. Then in March, she went on a short trip to Puerto Rico, and by April, her symptoms exploded. Since then, we’ve seen countless doctors and specialists—neurologists, three ENT doctors, a psychiatrist, a dentist, general practitioners, and we’ve even been to the ER multiple times.
She’s had extensive blood work (including thyroid panels), an MRI of the brain, and CT scans of her head and sinuses with and without contrast. Everything came back normal. We did find that her vitamin D was extremely low, so she’s now taking supplements for that.
Since childhood, she’s dealt with chronic ear infections and tinnitus, so we thought this could be inner ear related. That’s why we started with ENT specialists. While one suspected eustachian tube dysfunction, all ultimately ruled out any major ear issues. She did have a sinus infection with fluid in her ears after a recent cold, and she was put on prednisone and several antibiotics (amoxicillin, doxycycline, etc.). The infections cleared up, but the dizziness and balance issues persisted.
She’s also been diagnosed with anxiety disorder, panic disorder, and OCD. We’ve tried Lexapro, Hydroxyzine, and a few other medications, but unfortunately, they made things worse—triggering panic attacks. We’re now considering starting Sertraline, which I’ve seen some positive feedback about in this group. She hasn’t taken it yet due to fear of side effects, but we’re hoping she’ll give it a try this week.
Sleep has been a huge struggle as well.
At one point, we thought this might be POTS, as her heart rate would spike from low to high upon standing. Her cardiologist noted her blood pressure is low but stable (around 100/70), and recently her heart rate hasn’t fluctuated as much. We’re still pursuing a tilt table test in August just to rule it out. Has anyone here done a tilt table test? Was it helpful or too difficult? I’ve heard mixed reviews and would appreciate any insight.
She’s also been grinding her teeth a lot lately, which has caused TMJ symptoms. Her wisdom teeth may be coming in, so we have a dental appointment on July 28 to check that out.
We have upcoming appointments at Johns Hopkins with vestibular and dizziness specialists, and we’re hopeful they might give us more clarity.
I’m sharing our story in hopes of finding support, comfort, advice—anything. If you’ve experienced something similar or have insights, we would be so grateful to hear from you.
Thank you all so much, and God bless. 
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