Real RHS accounts
Stories
The part of Ramsay Hunt that no textbook covers — in the words of the people who live it. The first accounts are here.
Personal experience — not medical advice. When in doubt, get seen.
Read them
The first accounts are here.
A story from the community
My Journey with Ramsay Hunt Syndrome
Three separate episodes, a missed diagnosis, and treatment that came too late the first time. What she learned about pushing for the right specialists.
Melanie Albin, Psy.S., LMFT · Louisville, Kentucky
Read the story →
A story from the community
Coping with Illness and Pain
A therapist who lives with chronic pain shares the framework she teaches her own patients — the stress cycle, the stages of processing loss, and the coping skills that pull you back out.
Melanie Albin, Psy.S., LMFT · Louisville, Kentucky
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Why this page exists
The accounts I went looking for.
When half my face stopped working, I searched for someone who’d actually lived through this and could tell me what was coming. I couldn’t find them.
Clinical pages told me what the virus was doing to my nerve. Forums were full of people as lost as I was. Nowhere could I find a person a year down the road, willing to just tell the truth about what it’s really like.
So this is where those voices live: honest, first-person accounts from other people who woke up to a face that wouldn’t move and found their way through it. Not medical advice — just the truth, so the next person reading at 2 a.m. doesn’t feel as alone as I did.
Seth
Patient · Founder
More on the way
More stories are on their way.
“The dark stretch never lasts the whole flight. No goose gets left behind — and neither do you.”
Two accounts are up now, with more being gathered. If you’ve been through this yourself, add yours below — the next person shouldn’t have to look as hard as you did.