‘I wanted to bang my head’: How a delayed shingles diagnosis caused much suffering
SINGAPORE – For almost two weeks, I endured excruciating pain that no medicine could alleviate.
When the doctor told me the pain was likely to be permanent, I felt all hope slip away. It was just too much to bear.
My nightmare began on the afternoon of Oct 23, when I felt a pain on the right side of my mouth and jaw, and my right ear. There was also a blister on my chin.
The next morning, I went to the polyclinic where I had registered for Healthier SG.
The doctor suspected it was a dental problem affecting the nerve and suggested that I see a dentist. I booked a dental appointment for the following day.
Early that afternoon, the polyclinic doctor called to say that the fluid-filled blister on my chin could be a sign of shingles. While she still felt that my pain was related to a dental issue, she advised me to watch out for signs of shingles and to return immediately if necessary.
By late afternoon, two more fluid-filled blisters appeared.
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I returned to the polyclinic and saw a different doctor. Doctor 2 looked at the blisters and said they were not shingles. He also thought it was a dental problem.
However, the next day, the dentist gave me a clean bill of health – but I was still in pain.
I was back at the polyclinic the day after – on a Saturday morning – now with a cluster of painful, weeping blisters on my chin, jaw and cheek, as well as transparent bubbles on my tongue. There was a sharp pain in my ear.
I saw a different doctor. When I asked if it was shingles, Doctor 3 said confidently that it was not.
I asked again if he was sure. If it was shingles, I would have to start on antivirals to catch the 72-hour window, in which they would be most effective in reducing pain and shortening the period of infection.
There is a vaccine for shingles, but it is expensive, costing around $720 to $950 in Singapore for the two doses needed.
I had put off taking the vaccine because the Ministry of Health had said it was evaluating the vaccine for inclusion in the National Adult Immunisation Schedule.
In November, it said it would not subsidise the vaccine because of the high price. By then, I already had shingles.
Doctor 3 assured me that while it was a viral infection, it was definitely not shingles. Probably herpangina, he said. This is usually a mild disease causing ulcers in the mouth and throat.
Because he was so certain, I believed him and did not seek another opinion.
Major mistake.
The pain got worse and more blisters appeared on my face and in my mouth, and even in my ear.
I was back at the polyclinic early on Monday morning – my fourth visit – to see a fourth doctor.
He consulted a senior doctor, who took one look at me, declared I had shingles and started me on antivirals.
“Isn’t it too late for that?” I asked. It was the sixth day since the pain had began.
“It will still help somewhat,” he replied.
The next four to five days were pure agony. Half my tongue was ulcerated, the right half of my face was extremely painful, and I could not eat or sleep. I could drink only through a straw to avoid aggravating the ulcers in my mouth and on my tongue.
I lost 3.5kg that week.
When I accidentally pressed on my ear, the blisters burst and the fluid seeped out. My ear was very itchy and painful, as though needles were stabbing the inside of it.
When the blisters started to dry up, about 10 days after the first one appeared, the pain continued.
It was nerve pain – sharp and relentless – pulsating down my scalp, my right ear, the right side of my mouth and tongue, jawline and chin.
On Nov 4, I was back at the polyclinic for the fifth time. I saw Doctor 2 again. He told me the nerve pain – known as postherpetic neuralgia – was likely to be permanent.
The Centres for Disease Control and Prevention (CDC) in the US says 10 per cent to 18 per cent of people who have shingles experience pain that “can last for months or years after the rash goes away”.
It is extremely painful and can interfere with daily life, the CDC says.
The trigeminal nerve in my face was affected. According to the American Association of Neurological Surgeons, trigeminal neuralgia “is sometimes described as the most excruciating pain known to humanity”.
It was so bad that I wanted to bash my head against the wall to stop the pain, which the doctor had said might never go away. The thought of ending it all crossed my mind.
Doctor 2 prescribed gabapentin, the effects of which he said would take two weeks to be felt.
I googled the drug, and the side effects freaked me out. Among the common side effects – meaning at least one in 100 people get them – were memory loss, blurred vision, unsteady gait, nausea, dizziness, swollen arms and legs, and impact on the liver and kidneys.
I did not take the drug.
And then, the pain worsened even further. I began experiencing sudden, excruciating, searing attacks of pain that left me mute.
These episodes, lasting only a minute or two but feeling like an eternity, came twice a day, often waking me in the night.
One of my sisters suggested acupuncture, which I had never tried before. But, by then, I was ready to clutch at any straw.
Friends recommended the Singapore Thong Chai Medical Institution, which has been around since 1867. It is a free clinic that relies on donations and sees patients on a first come, first served basis.
At the clinic’s Bedok Reservoir branch, the young acupuncturist was very thorough with the recording of my medical history.
He is a graduate of NTU with a double degree – a Bachelor of Science (Honours) in biomedical sciences and a Bachelor of Medicine (Chinese Medicine), which was awarded in conjunction with Beijing University.
He explained that acupuncture increases blood circulation and that would help with the healing.
It also improves the flow of qi, a vital energy in the body, according to traditional Chinese medicine.
A few hours after the 30-minute acupuncture session, the level of pain eased somewhat.
I do not know if it was coincidental, but I have not had any excruciating pain spasms since that treatment.
I am still continuing with the twice-weekly acupuncture. While the pain, a burning sensation, persists, it has become more bearable, though its intensity fluctuates.
At times, I experience sharp pain that feels like little electric shocks.
Meanwhile, I returned to the polyclinic to ask if there were alternatives to gabapentin. This time I saw Doctor 3. I told him his earlier diagnosis was wrong. If he had started me on antivirals when I saw him, I might not be suffering from trigeminal neuralgia now.
He replied: “You didn’t have classic symptoms.”
That was not true. I had pain in the mouth and tongue, as well as blisters in my mouth and on my face, all of which are symptoms of oral shingles.
My faith in doctors was badly shaken. Although, to be fair, the first doctor I saw thought shingles might be a possibility based on the early symptoms I had, and took the trouble to phone me after I had left the clinic.
I asked the polyclinic for a referral to a neurologist, and I am now under his care. He said there is a possibility that the pain may not be permanent and could go away after a couple of months.
Even if it is permanent, there are treatments available.
I hope he is right, and that the treatment does not end up being worse than the problem.
The lesson I have learnt from this episode is that not all doctors are equal. So when in doubt, get a second opinion. After all, it is your health that is at stake.
Correction note: In an earlier version of the story, we said the author asked for a referral to a neurosurgeon. It should be a neurologist.
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