Onset
Ramsay Hunt Syndrome (RHS) typically manifests as a sudden onset of facial paralysis. In certain cases, but not all, lesions resembling shingles may appear on the ear or face up to a week after the initial facial paralysis. These lesions are caused by the reactivation of the Chicken Pox virus, Varicella zoster. Therefore, it is crucial to seek immediate medical attention to initiate treatment with steroids and antiviral medications.
​
The journey with RHS varies for each individual. Some people may recover within weeks to months, while others may only experience partial recovery over the first six months, followed by persistent symptoms. Additional symptoms can include headaches, ear pain, hearing loss, or vertigo, which is characterized by issues with balance or feelings of dizziness.
Early Treatment
Initiating treatment with steroids and antivirals, as prescribed by your doctor or emergency care physician, is crucial as soon as possible to inhibit virus production and minimize inflammation-induced damage. Intravenous Acyclovir and steroids have demonstrated an improvement in prognosis.
Cimetidine (Tagamet) is currently being evaluated for its potential in treating herpesvirus infections. For more information, you can refer to this PubMed article.
Fatigue
During the initial months following diagnosis, many patients often encounter significant fatigue. It’s crucial to pay attention to your body’s signals and ensure you get the necessary rest. Your body requires energy for the healing process. Although the viral infection may only be visible on your face, it impacts your entire body’s ability to heal. Therefore, adequate rest is essential for recovery.
Nerve Pain
Gabapentin is the agent of choice for nerve pain. Also, Lyrica/pregabalin.
Eye Care
It is also important to protect your eye if it does not close completely. Consult with a neuro ophthalmologist if you have eye issues
​
HYLO Gel drops or other eye drops. Viscotears eye gel, moisture chamber. Optase MGD advanced dry eye drops and Opase Hylo Night eye ointment. Avoid preservatives and antihistamines (which can exacerbate dryness).
​
Scleral lens (a contact lens that can cover your cornea to protect it from drying out) Expensive.
​
You can also have a punctal plug inserted (by an ophthalmologist) into the lower tear duct to help slow the drainage of tears since our muscles controlling our lower lid often don’t function well enough to hold moisture which results in quicker moisture evaporation and dryness.
​
Taping, such as 3M Micropore tape for night time.
​
Surgical: Eyelid weight, raising lower lid.
​
Eye watering – may be a sign of dry eye or may be a form of synkinesis (some patient’s eyes will water while eating).
Vestibular Therapy
If you’re dealing with vertigo or balance issues, vestibular therapy could be a viable option. The vestibular nerve, which extends from your cochlea to your brain alongside the facial and auditory nerves, can be impacted by the initial viral infection. When your brain doesn’t receive orientation signals from one side of your head, it can result in vertigo, a sensation akin to sea sickness. However, the silver lining is that it’s possible to retrain your brain to counteract this effect. Vestibular therapy involves exercises that test your vision and balance while in motion. It may require several weeks of practice before you notice improvement, but rest assured, it’s an effective approach!
Dental Care
Some patients have dry mouth on the affected side. Thus, regular oral hygiene is critical to avoid cavities and tooth loss.
Dietary Recommendations
Anti-inflammatory diet (Mediterranean, limit sugar, keep carbs complex, limit red meat). Especially in the acute phase of the infection.
​
Supplements: Lysine, vitamin D3, vitamin B complex, multivitamin, fish oil.
Emotional Support
Experiencing changes such as losing your smile, winking, drooling while eating, nerve pain, and vertigo can all have a significant emotional impact. These changes can also contribute to anxiety, which isn’t conducive to the healing process. It’s important to remember that you don’t have to face this alone! Seek out a support group, learn to meditate, and continue exercising (consider wearing ski goggles to protect your eyes when outside). Communicate with your family and friends about what you’re going through so they can provide support. Remember, they care about you, even if your smile is a bit crooked or your speech is slurred. Take each day as it comes. If you feel like retreating for a day, that’s perfectly okay. Just make sure to re-emerge the next day to face the world.
Disability
If your symptoms are debilitating, you may consider applying for disability coverage.
Avoid
During the first 6 months, acupuncture, especially with electrical stimulation. This can cause synkinesis later.
After 6 Months
After a period of six months, the recovery process tends to stabilize. This is an ideal time to revisit your otolaryngologist or neurologist for facial therapy. If you’ve developed synkinesis, you may be eligible for Botox treatments to soothe the nerves that are misfiring. Incorporating facial massages and speech therapy can also aid in adapting to any residual loss of function.
Flare Ups
Some patients may encounter recurring infections. In such cases, these individuals are likely to commence antiviral treatment and possibly maintain it over the long term. There is some evidence suggesting that the shingles vaccine can prevent breakthrough infections, although this may not be effective for everyone.
Healing Will Continue
Healing will continue for another 2 years. Continue eye care, dental care, vestibular therapy as needed.
Other Patient Resources
RHS Facebook support page: https://www.facebook.com/groups/ramsayhuntsyndrome
Patient blog: https://www.melaniealbin.com/post/my-experience-with-ramsay-hunt-syndrome
Facial Palsy Awareness Week (1-7 March) by charity Facial Palsy UK.
UK Facial Palsy page for RHS: https://facialpalsy.org.uk/wp-content/uploads/2018/03/Ramsay-Hunt-syndrome-FPUK-Web.pdf
Botox for synkinesis: https://www.ncbi.nlm.nih.gov/pubmed/28688864
More on synkinesis: https://www.facialpalsy.org.uk/support/self-help-videos/management-of-synkinesis-tight-face/
RHS – the cost of being let down. https://www.facialpalsy.org.uk/news/ramsay-hunt-syndrome/
2018 Survey report https://www.facialpalsy.org.uk/news/ramsay-hunt-syndrome/ - 68% misdiagnosed, most prevalent onset between 35 and 54 years old. 80% women responded to survey