Lisle* describes her personal experience of Ramsay Hunt syndrome and includes detailed information about her symptoms to try and help others.
I have Ramsey Hunt Syndrome (RHS). My facial paralysis was an early Christmas present in mid-December 2016. I had no idea of how great a challenge RHS would be or such an interesting though decidedly unpleasant ongoing journey. I was not grateful at all for my unusual present!!
Maybe a list of tell-tale symptoms I know now in hindsight was the beginning of RHS might help others get the medicines promptly and reduce the severity of the pain and paralysis I suffered. RHS is caused by shingles, the chickenpox virus which can lurk secretly in the nervous system in anyone who has had chicken pox. In RHS the virus attacks the facial nerve on one side. SPEED of diagnosis is imperative.
For two weeks before the facial palsy began
- Growing fatigue.
- Strange sensation of nausea over entire body, even fingers and toes, but no vomiting.
- Smarting left eye.
- One night of very painful joints and stabbing pains.
- Vivid very real but nasty dreams. Waking every hour or so then back into another bad dream.
- Food not enjoyable and adding loads of pickle and sauces to get any flavour.
- Pain in left eye, burning sensation.
- Constant nagging ache across the mastoid bone behind ear (which I thought was a pulled neck muscle).
- Sudden non-painful banging sensations on left cheek bone, like a hammer hitting.
- Whilst cleaning teeth I thought my left eye did look very tired and droopy, I decided had to get more sleep, but was puzzled it was not both eyes.
- Very disturbed sleep with horrid dreams.
- Nagging ache intensified.
- Woke up to a cup of tea and breakfast in bed. Took a drink of tea, which ended up all over me and the bed clothes.
- Felt like I had been to the dentist and had a local anaesthetic injection.
- Looked in mirror, oh dear! Top lip rigid and not moving.
- Tried whistling, no pucker.
- Stuck tongue out, veered to left. Tried curling tongue, no success.
- Total fear and panic set in. Asked my husband for a rapid ride to A and E, only a few miles away on fast roads, quicker than ambulance, BUT also very stupid had it been the stroke I suspected. Always call for emergency services.
- Arrived A and E and calmly announced I’d had a stroke, straight into majors.
- Treated as if I’d had a stroke. Given tests for stroke, all negative. Sent home with no diagnosis and a pack of aspirins. Follow-up appointment two weeks later.
- Extremely ill, terrible nagging ache in mastoid, agonising earache and shooting pains.
- Felt removed from reality with a head very, very sick and growing numbness.
- Wondered if it was a Bell’s palsy as given no idea what the problem was in A and E.
- Too scared to sleep, sat upright in bed, but nodded off for a few hours.
- Woke feeling ever more ill with excruciating headache.
- Left face drooped, mouth rigid and hard to open, eye screaming with pain.
- Rang 111, the NHS helpline. Rapid response paramedic arrived very quickly.
- Realised left eye was fixed open.
- Taken to A & E by the paramedic. Bell’s palsy diagnosed, given eye drops, tape and steroids.
- Eye pain intensified so dash to minor illnesses unit.
- Given better drops and advice.
- Symptoms intensified over next 24 hours.
- Searing headache/earache and sore mouth, face more paralysed and droopy.
- No taste sensation left side.
- No saliva left side.
- Nostril caved in left side.
- No sense of smell, left side.
- Speech severely impaired.
- Eye fixed wide open with no blink.
- No tears.
- Weird tinnitus.
- Rush to GP feeling very ill.
- Fourth person to look in ears, nothing.
- First person to look in MOUTH. EUREKA!!!
- Although name of syndrome eluded GP he had knowledge of what it was and I got my diagnosis of SHINGLES and some very much needed antiviral medicine.
That is my sad and sorry route to a diagnosis of Ramsey Hunt. BUT thanks to Facial Palsy UK I am hopeful more and more emergency staff will look beyond stroke to Bell’s palsy immediately; begin steroid treatment without delay and offer antivirals where there is severe pain.
Or better still recognise the additional symptoms, not always a rash visible on the face, eye or ears.
Please do use any and every opportunity you meet a nurse or doctor or allied health professional to spread the word and increase awareness as even the best efforts made can be lost in the crazy busy world of A & E’s.
The road to recovery is tough and very personal. It can either be full of support or a very lonely road in finding the right medical treatment and dealing with our own unique lifestyles and responsibilities.
My journey is still challenging with odd days of emotional meltdown. I now have some improvement and mostly HOPE of better days to come. Recovery is hard work and needs dedication to follow advice and instruction.
*Name has been changed for confidentiality reasons
Facial Palsy UK comment: If this is the first page you have arrived at on our website, please note this a personal story and Lisle’s symptoms are not necessarily representative of all people with Ramsay Hunt syndrome.
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.
Last reviewed: 20-12-2017 || Next review due: 20-12-2019