While pop star Justin Bieber’s recent revelation that he had Ramsay Hunt syndrome shed some international awareness on this disease, Jack’s (not his real name) symptoms started with what he thought were ulcers on the back of his tongue.
He also had a slight sore throat but at no point did he feel unwell. He went to the pharmacy and got some ulcer treatment.
For the next couple of days, he still had the ulcers and a horrible taste in the back of his mouth. Then an intense stabbing pain started behind his right ear. As he had suffered from ear, nose and throat (ENT) problems all his life, he was familiar with inner-ear infections – but this was different.
While driving home from work, the right side of his face started to feel unusual. He assumed he was just tired, coupled with the stress of the earache.
The next morning, he woke with noticeably reduced movement on the right side of his face. He went straight to the emergency room, where doctors diagnosed Bell’s palsy – a condition that causes sudden weakness in the muscles on one side of the face – but owing to his age and ENT history, they were unable to prescribe steroids.
By the end of the day, he had lost a lot of sensation in his face and was unable to close his right eye fully or move his mouth freely. By the time he woke up the following morning, he had lost all movement on that side of his face.
On the third day, things took a different turn. One minute he felt fine; the next the room started spinning, everything seemed loud, he felt hot, his heart raced, and he had pain up his left arm.
When the paramedics arrived, they carried out tests including an ECG and found his heart rate was rapid. But there were no other signs of anything serious, so they brought him to the hospital for further testing, where it was suggested he had experienced vertigo.
The doctor in A&E went through his full medical history and re-diagnosed his case as Ramsay Hunt syndrome. This was due to the ulcers in his mouth that were likely shingles blisters, paired with the earache, increased sensitivity to sound, and vertigo.
Over the next few weeks, Jack became a lot more self-conscious of his face. He had to carry sunglasses to protect himself not only from the sun but from even the lightest of breezes, as the wind would cause dryness to his exposed eye. He had to adapt to eating and drinking slowly, and at times slurred when he spoke.
After two months he started to get movement back, albeit initially small. While he has since regained most of his movement, he still experiences altered sensation on the right side of his face and sometimes gets muscle twitches.
He is almost back to his regular self, even though he has to go for regular physiotherapy and his smile is not quite what it used to be.
The worst part, Jack says, was having to tape his eye closed at night and use drops regularly to prevent dryness. He had to plan social activities around being able to administer drops and making sure he avoided dusty environments or prolonged exposure to sunlight.
Nonetheless, he is thankful to have regained almost 90% of his facial-muscle strength.
TELEME Healing Life Stories is a collection of inspirational stories of how ordinary people triumph over their health conditions and recover to lead a healthier life. Email [email protected] to share your story.
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