My Journey with Ramsay Hunt Syndrome
Preface
When I woke up Dec 12th, I knew something was off but I didn't realize what and how serious it was. I didn't realize the next ~1.5 years to now (Sept 2025) would be full of lessons - now gratitude - but naturally life is going to life.
I told myself I'd write about my journey with Ramsay Hunt Syndrome eventually though. Not so much to reflect, but to share my timeline objectively and hopefully it could help someone else.
Purpose of this Post¶
- Share my timeline - when I got diagnosed, rediagnosed, found help, started feeling better, and where I'm at now
- Share what made my recovery have a good outcome
Timeline - From then to now¶
Let's start with a timeline of key events; this will start off mostly day by day and will skip to weeks and months to now.
| Date(s) | Description |
|---|---|
| Tuesday (12/12) | Woke up with neck and ear discomfort, possibly from a workout. |
| Wednesday (12/13) | Pain became more intense but still bearable. |
| Thursday (12/14) | Traveled to work in Seattle. Left ear popped during commute. Tingling lips, numbness in lips and tongue (12pm), numb cheek (3pm), difficulty blinking left eye (6pm), difficulty hearing in left ear (8pm). Returned home at 10:30pm knowing a visit to urgent care or ER was needed. |
| Friday (12/15) | Visited Urgent Care; tested for stroke and sent to ER. Diagnosed with Bell's Palsy. Prescribed 60mg daily Prednisone for a week. Pain subsided after initial dose. Ordered sleep mask, turmeric, ibuprofen, and Tylenol PM. |
| Saturday (12/16) – Tuesday (12/19) | Full paralysis of left side of face continued, but no pain or discomfort. |
| Wednesday (12/20) | Regained some ability to move upper (left) eyelid; still needed sleep mask. Noticed a suspected pimple in the ear. |
| Thursday (12/21) | Follow-up at Seymar Clinic. Applied pimple patch. Last day of prednisone. Provider agreed with Bell's Palsy diagnosis and saw no need for further medication. Scheduled reevaluation in 90 days and a physical in 2 weeks. |
| Friday (12/22) | Woke with headache and rash/blisters in ear. |
| Saturday (12/23) – Monday (12/25) | Ear and face pain worsened; swelling increased. Pain meds no longer sufficient. |
| Tuesday (12/26) | Returned to Urgent Care. Brought up Ramsay Hunt Syndrome (RHS). Doctor agreed due to ear rash. Swabbed ear to test for RHS/herpes zoster. Prescribed: 9-day Prednisone taper (50/40/30 mg), 7-day Valacyclovir (1000mg, 3x/day), and 600mg Ibuprofen (3x/day). Pain reduced from 8 to 3–4. Minor eyebrow movement. |
| Wednesday (12/27) – Friday (12/29) | Minor swelling and headaches continued. Regained slight upper cheek movement, resulting in eye squint twitch. |
| Tuesday (1/2) | Anticipating running out of medication, researched facial palsy recovery and found specialist Pierre Butheau. Signed up for his at-home video program. |
| Thursday (1/4) | Contacted Pierre directly after learning he was in the Seattle area to get further help. |
| Friday (1/5) | Scheduled a virtual follow-up with Urgent Care for the next day due to running out of prednisone and ongoing pain (3–4). |
| Saturday (1/6) | Virtual appointment with Urgent Care. Prescribed a final 3-day prednisone taper (20/10/5 mg). Doctor advised against further prednisone use. |
| Tuesday (1/9) | First appointment with Pierre Butheau to review diagnosis and build a plan. Began visiting every 2 weeks through January 16, 2025. |
| Wednesday (1/10) | No pain and out of medication. |
| Thursday (2/15) | Eyebrow movement improved to ~80%; no other areas showed new movement. |
| Wednesday (2/28) | Snarl muscle (near nose) began twitching. Taste and sensation started returning to the tongue except the tip. |
| Friday (3/15) | Eyebrow at full strength. Snarl muscle ~80%. Taste and tongue sensation fully recovered. |
| Thursday (3/21) | Gained ability to close upper (left) eyelid very slowly. Still no movement in bottom lid or upper cheek. |
| Thursday (3/28) | Able to smile (mouth closed) at ~20%. |
| Saturday (4/13) | Snarl regained full movement. Began using cheek muscle to clear food from mouth. |
| Sunday (5/5) | Able to wrinkle nose with snarl at ~50%. |
| Thursday (6/20) | Gained full movement of lower eyelid to assist in eye closure. |
| Sunday (7/7) | Able to close left eye at nearly the same speed as right. Stopped using eye mask for sleep. |
| Thursday (7/18) | Able to pucker lower lip ~90%, upper lip ~20%. |
| Thursday (8/22) | Regained full puckering ability in both lips. |
| Thursday (9/12) | Began experiencing intense twitching in platysma and depressor anguli oris (DAO) muscle. |
| Friday (9/20) | Full facial movement achieved. Twitching symptoms persisted with hot/cold sensation throughout the day/week. |
| Thursday (10/10) | Discussed twitching with Pierre; confirmed as normal. Botox or surgical muscle removal suggested as options. |
| Thursday (10/17) | Pierre referred to a botox specialist in North Seattle (Everett), Dr. Bhama. |
| Wednesday (11/20) | First appointment with botox specialist to evaluate eligibility for recovery injections. |
| Thursday (2/6/25) | Received first botox injections: 50 units total — 3 near left eye, 3 in DAO, 6 in platysma. Noted significant relief. |
| Friday (2/7/25) | Reported feeling the best in months with no issues. |
| Saturday (2/15/25) | Experienced some twitching flare-ups, ~50% as intense as before, but they subsided. |
| Wednesday (5/28/25) | Received second dose of botox: 100 units — 3 near left eye, 1 in corner of lip, 3 in DAO, 6 in platysma. |
| Monday (9/1/25) | Third dose scheduled for September 30th. Little to no issues leading up to this. May postpone to October or November depending on specialist availability and to test longevity of benefits. |
Key learnings during recovery¶
- Advocate for yourself and research! If I wouldn't have brought up my ear swelling and continued pain and issues then I probably would've been told it's Bell's Palsy and not given the right medication. (Btw, I don't blame the physicians, since Ramsay Hunt Syndrome is much less likely than Bell's Palsy)
- Be patient - this is the hardest part because regaining strength and movement can takes days if not weeks.
- Don't strain to regain movement. E.g. I tried for awhile to forceably close my eye and it caused adverse effects like twitching in other parts of my face.
- If you can't close your eye all of the way, stay away from looking at screens long because you won't blink often, stay away from fans because they can dry out your eye.
- Manage your stress to manage your nervous system. Your nerves are growing back and they control you muscles; retrain them with care and patience. When I went back to work in March '24, I had a lot of stress and it caused me to have flare ups of twitching that I couldn't control unless I stepped away and could calm myself.
Key people that helped my recovery¶
- My wife for keeping me motivated and patient and helping me get to all of my appointments and keeping me positive.
- Dr. Pierra Butheau - Physiotherapist, Instagram, Website
- Dr. Prabhat K. Bhama - MD, Website
Research that helped me understand my diagnosis and recovery¶
- Study following a 20yr old with RSH with a documented timeline up to 85 days
- Overview of Ramsay Hunt Syndrome
- Antiviral therapy for Ramsay Hunt syndrome (herpes zoster oticus with facial palsy) in adults
- What else could happen based on the RHS?
- RSH Type 2 Overview
- Time lapse over someone’s recovery over 16 weeks
Ask for help¶
If you're reading this and have RHS and think I could possibly help you, reach out! I'll happily give you advice, listen, and try to help any way I can.