- Doctors made a range of vague diagnoses for Kavitha's daughter, who was suffering from extreme spells of dizziness and a slight nausea
- Faced with no diagnosis, Kavitha turned to the internet to find the answer and figured that her daughter had migraine associated vertigo (MAV)
- Finding a doctor who believed her was another challenge. She finally found one such doctor in Mumbai, who confirmed the diagnosis
It’s 2017, and by now we’ve all learnt that we shouldn’t go to the internet for solutions to our health problems. At best, we could end up diagnosing ourselves with cancer, and at worst we could have nervous breakdowns. That way a certain madness lies.
Or should we?
I am the daughter of a doctor, a paediatrician who used to head the paediatric ward at one of Bangalore’s top hospitals. I grew up among doctors and am very comfortable with medical procedures. My father, now deceased, used to lecture me constantly about not searching the internet for a cure. “Leave it to doctors, they know best,” he would say. “Forty years of medical knowledge can’t be replaced by 10 minutes on the Internet.” I believed him. For years, unlike my other hypochondriac friends, I went to doctors, accepted what they told me, and was perfectly fine.
For years, unlike my other hypochondriac friends, I went to doctors, accepted what they told me, and was perfectly fine
I have now completely changed my mind.
About a year ago, my 16-year-old daughter started complaining she felt dizzy. There were no other symptoms, just dizziness and a slight nausea. At its peak, the dizziness was so intense that she could barely walk.
Our first stop was the hospital where my father had worked. We didn’t know then that it wouldn’t be our last. Over the next year, we saw at least four ENT specialists, three neurologists, two allergy specialists, and two cardiologists. We did a gamut of tests from blood to MRIs and ECGs. We ruled out brain tumours, hearing disorders, epilepsy and migraine.
About a year ago, my 16-year-old daughter started complaining she felt dizzy. We did a gamut of tests from blood to MRIs and ECGs. We ruled out brain tumours, hearing disorders, epilepsy and migraine
The doctors gave us a range of vague diagnoses. First, vitamin deficiency — the standard Vitamin D shortage. We put her on vitamins, but the dizziness remained. Then, dust allergies and sinusitis. We started allergy medication and painstakingly washed all sheets in boiling hot water. Then, a complete lifestyle change. Yoga — that cure all for the modern age. Healthy food, though we already ate healthy.
By now, it was board exam time. My daughter struggled with increasing vertigo and barely managed to complete her exams. By now, the doctors had started telling us it was psychological, subtly shifting the blame to us. A paediatrician who had been my father’s close friend talked meaningly about exam stress and pushy parents who put too much pressure on their children. One neurologist grabbed my daughter’s arm and practically shouted: “Stop this silly attention seeking.” Another said, “You should be glad you don’t have a brain tumour. This is nothing.” Her teachers at school didn’t believe her either.
When all else failed, I searched Google for answers
For a time I, too, faced with no diagnosis, believed it was psychological. But, as the months went by, I started thinking the real disease lay hidden. The turning point came when we went on a European holiday. My daughter — who had been looking forward to the trip for months — refused to even leave the hotel. “I am tired of being the girl who is always sick and whom nobody believes,” she told me. She dropped out of school, and stayed in bed for a month; the dizziness so severe that she couldn’t even sit up and read.
For a time I, too, faced with no diagnosis, believed it was psychological. But, as the months went by, I started thinking the real disease lay hidden
I started searching the internet as soon as we returned from the holiday. The difficulty was that dizziness could be a symptom of a great many diseases, from hearing disorders to anaemia. I had to thread my way through a thicket of information. Then, one day, through sheer luck, on Page 6 of a Google search, I came across a Daily Mail article, of all improbable things, in which a young girl seemed to have exactly the same symptoms as my daughter. She too, had been told it was all in her mind.
The disease was called migraine associated vertigo (MAV), a lesser-known variation of the regular migraine. MAV, as it is called, is often overlooked or confused with other diseases, because unlike regular migraine, sufferers don’t get headaches, see flashing lights or have blackouts.
My daughter had been asked about the common symptoms of migraine. We had been told that a migraine without headaches did not exist, but here it was.
Not one doctor had thought of searching for the less common symptoms, which I Googled in less than a day.
Then, one day, through sheer luck, I came across a Daily Mail article in which a young girl seemed to have exactly the same symptoms as my daughter. The disease was called migraine associated vertigo, a lesser-known variation of the regular migraine
There is no test for MAV, but the more I read, the more convinced I was that I had found the right diagnosis. I found absolutely no Indian material on MAV, so I went to US medical sites, where the disease is more well-known. Here, I thought, was proof. But I might as well have not. The doctor, one of India’s top neurologists with years of experience at NIMHANS, sneered at my internet printouts. “You don’t need to be ashamed of having depression,” he told my daughter, who by now was practically in tears every time she saw a doctor. “Hey, Deepika Padukone is also depressed,” he added, as if that made it desirable.
And turned to strangers for advice
I needed a doctor who believed me. But where would I find such a medic in India? I even contemplated going overseas for treatment. But before that, I broke another one of my cardinal rules: I went on the internet to ask strangers for advice. Twitter was my first port of call, because of its reach. I tweeted a question: Had anyone out there suffered from MAV? I did not expect a reply, but was pleasantly surprised.
Two people responded, one of whom recommended a specialist headache and migraine doctor in Mumbai. (I will call him Doctor X). One had been cured. The second had been to the very same doctor, and had nothing good to say about him.
With few options left, I phoned Dr X. For the first time, I found a doctor who actually took me seriously and didn’t dismiss our year of suffering. We took my daughter to Mumbai, where he confirmed the diagnosis of MAV. He put her on medication, and asked her to avoid some foods that could trigger vertigo, mainly the four Cs — cheese, chocolate, caffeine, and Chinese cuisine. MAV often afflicts young girls, he told me, and the causes could range from hormones to genetics.
I only wish I had thought of searching the internet earlier, and that my daughter had not lost a year of her life to a curable illness
In two weeks’ time, we saw a definite improvement. Now, two months of medication later, she is practically normal, happy, and back in school. I only wish I had thought of searching the internet earlier, and that my daughter had not lost a year of her life to a curable illness.
But, as Doctor X told me, I was not alone. “Most people who come to me have been ignored for years,” he said, adding, “As for this supposed depression, if you can’t stand up straight for a year, and people keep telling you all it’s in your head, then why wouldn’t you be depressed?”
What I learnt from this messy saga
1. Search the internet. But do it intelligently. Don’t let it be your first choice if you have an easily diagnosable, well-known disease. Only resort to the web if you have something that doctors are baffled by, and which has no diagnostic test.
Remember that Indian doctors are still more used to seeing life threatening diseases or public epidemics like dengue or cholera. They often ignore diseases that are tough to diagnose, like chronic fatigue syndrome, migraines, Crohn’s disease or Lyme disease. They also often have no training in these. “Most doctors think migraines are inconsequential and look for more serious issues,” Dr X confirmed.
2. Choose the right sites. My Daily Mail lucky find notwithstanding, it is best to search properly accredited sites where content is written by doctors, such as medical universities, non-profit health organisations or government sites. I used sites like the Mayo Clinic and the US National Library of Medicine.
Do not rely on newspapers or magazines, which often resort to clickbait, scaremongering articles. Sites supported by drug or supplement companies are also suspect. Avoid such quack websites like Mercola and Natural News, which have an interest in peddling their own supplements, and have been pulled up by the FDA for false medical claims.
3. Do not panic. Remember that some common symptoms like dizziness, nausea and headaches can be symptoms of multiple diseases, not necessarily severe ones. We all think of cancer when we are ill, but in reality it’s unlikely that a headache or stomachache means cancer. The smart thing to do is to get it tested, and of course, go for annual health screenings.
4. Trust the patient. In my experience, children, especially teenagers, are nearly always told they are stressed or malingering. If your child tells you that he or she is mentally fine but physically unwell, believe them. A parent’s intuition is a powerful thing.
5. Look for descriptive words or phrases that jump out at you. For me, my daughter would repeatedly liken her dizziness to “being on a boat but not a roundabout.” This is a characteristic feature of MAV, and helped me narrow it down.
6. Go to patient forums and social media for doctor recommendations. I found migraine forums very helpful to talk about cures and food triggers. For lifestyle diseases, cures are often hit and miss, and vary by patient. It is thus vital to try a few things before you give up hope. Caution: remember that most people go on these forums only to vent. The ones who are easily cured don’t keep coming back, so you may often find no stories of hope at all, which can be depressing. Twitter and Facebook are also very useful tools for doctor recommendations. But keep in mind that one person’s savior is another person’s curse, as in my case.
7. Don’t self-medicate. Once you have some information, go back to your doctor, preferably a specialist. But don’t figure out a cure yourself. My daughter was cured only by a careful cocktail of drugs, which I certainly could not have found on the internet.
I am never going to stop trusting doctors. But I also know that the days of kind, sensitive family doctors who knew their patients well and would take ample time over diagnoses are gone. I am going to be using the internet more often. I wish more doctors would do it too.
Lead visual: Nikhil Raj
Updated on March 3, 2017, at 8.35am to correct the name of chronic fatigue syndrome. The earlier version said chronic fatigue system. The error is regretted.