It took Rohan Dsouza, a fashion photographer, near 30 years to be diagnosed with narcolepsy, an incurable sleep disorder. Here he rues how he was adversely impacted personally and professionally because it is one of the most misunderstood and underrecognised health conditions.
I was diagnosed with narcolepsy at age 30. I lived in distress, confusion and disgrace, not knowing what was wrong with me.
Early symptoms
As a child I used to fall asleep anywhere, anytime. I had difficulty getting out of bed. There were weird sleepy moments at home and in school over which I had no control. In class, I would often be found sleeping. At birthday parties, or family get together, I used to flop down on the floor and roll off to sleep. I recall dozens of embarrassing moments when I needed to be super alert, but I was caught napping - in between my exams, or basketball matches, or on the sports field. Even during movies, I would be found curled up in my chair halfway through the film. I have been called ‘lazy’ ‘idle’ ‘sleepyhead’.
My parents were concerned, though never alarmed. Since excessive sleep was seldom considered a health issue, I was always dismissed as someone who needed more sleep than others. There were constant taunts I had to hear during my childhood:
- “Why are you always so sleepy all the time?”
- “You are such a lazy person.”
- “I have never seen you fully alert.”
- “You're always dozing off.”
I had no answer. All I could sheepishly mutter to my friends: “I do feel more tired and sleepy than you guys. I don’t know why?” Doctors too seemed clueless. ‘Don’t worry…You’ll get better with age.”
Symptoms escalate
But as I grew older, the symptoms only began to escalate. I started getting sleep paralysis, a feeling of being conscious but unable to move. I remember the first episode. I had suddenly woken up one night to go to the bathroom, but I felt my hands and legs go stiff. I couldn’t move at all. I was totally paralysed for a minute. That was really frightening. After that I had several attacks of sleep paralysis.
Driving had become hazardous. Sometimes I would fall off to sleep at the wheel. Once I was caught dozing at a traffic signal. People had to thump on my window to wake me up.
Then there were spells of hallucination. I began to have visions and hear voices, especially those of children. I would be reading a book in my room, and I would see children hiding behind the sofa or curtains staring and laughing at me. It was extremely disturbing. “Maybe some children had died in this house and their spirit was still wandering around,” I recall telling my wife.
Diagnosis
In my mid-twenties, I had become passionate about fitness and bodybuilding. I had started following a strenuous routine at the gym. As my visits to the doctor were off and on depending on symptoms, I was advised a check-up with an orthopaedic in case there was something linked to my spinal cord. But my back and spine were perfect.
Then I was referred to neurologist Dr. Ramesh Patankar. He heard my medical history and said, I think I have a diagnosis that explains your symptoms. You have Narcolepsy - a chronic neurological disorder that affects the brain's ability to control sleep-wake cycles. He also explained that the bouts of delusions and deliriums I was experiencing were common with patients of narcolepsy. They are called hypnogogic hallucinations (imagined sensations that seem very real).
So in 2005, after living with symptoms for over 30 years, I was finally diagnosed with narcolepsy. It was unfortunate that it was misunderstood and could not be detected earlier. Determining an accurate diagnosis – let alone treatment – can take years, as in my case. Once I started figuring out details about narcolepsy, I knew that this was it. Excessive daytime sleepiness, vivid dreams. As I contemplate just how my life has been impacted as result of narcolepsy, the first thing that comes to mind are the barbs I had to hear all my life… ‘Sleepy and Lazy’. I have been impacted both personally and professionally. Friends have drifted apart because of my erratic behaviour. I have lost clients and many business opportunities.
Yes, getting a diagnosis was a relief.
Side effects of medicines
Dr Patankar prescribed Fludac tablets to regulate my sleep. The medicine did not suit me and I began having major side effects. It led to major depressive behaviour and emotional attacks. I would start crying easily. I had also developed suicidal tendencies. I felt I was spiralling out of control. There was an instance when I tried to kill myself with a heavy dose of sleeping pills. I almost went into coma and had to be rushed to the hospital.
Sleep Disorder
I contacted Dr. Preeti Devnani, a sleep specialist. She did a polysomnography, a sleep study test to diagnose sleep disorders. She confirmed I had narcolepsy. She started giving me medicines for my depression, and added that if it didn’t I would have to visit a psychologist for counselling.
It took at least two years to adjust to my medicines and my new lifestyle. Dr Devnani had notified me that I cannot live a normal life like others. I would have to change. It so happens that I am a fashion photographer with a crazy routine and requirements. Late night shoots, parties and events become unavoidable. But the doctor warned me that I would have to stop all that. I could party like others. No more late nights, she cautioned. Whatever happens my sleep should not be obstructed. I would have to sleep on time, keep a clean eight hour sleep schedule everyday.
Currently, I am on the following medication - Depsonil zolpidem oxytol and sizodon.
Current situation
With medicines, I am getting back to normal. I can go to the gym, I can drive. I am a passionate Harley-Davidson motorcycle rider. I can ride 500-600 kilometers in one day now, but the moment it becomes dark, I pull over into a hotel. I have also kept a driver. When out for a drink with friends, or if I am going to get late at my shoots, I take him with me. I have started scheduling my meetings for the afternoon. Even if I go out for a late night party, I have my dinner and exit early. I try to sleep by ten on most days. I have to maintain that sleep discipline. If occasionally I stay back late, say after 12, it plays havoc with my schedule. It takes me three-four days to get back to my normal cycle. I have to constantly plan my sleeping schedule and taking my medicine on time. My hours are crazy. I work in a challenging profession. But I try to get as much sleep as possible at night by practicing good sleep hygiene.
I also have periods of forgetting things I have said or done. For instance I may have told a friend I would call them the next day but I don’t remember it at all. Sometimes even after I see the message I sent.
Changed personality
My diagnosis has changed me considerably. I have sobered down. I have cut down my socialization and outings. There was a time, when I was extremely enthusiastic about life. I would love to go on holidays and short trips. I would drive down on impulse to Goa if there was a two day vacation. If it was not for narcolepsy I would still be that kind of a person...outgoing and carefree. I would still be a person who would start my car anytime in the middle of the night and go for a drive or go for a bike ride.
My wife also corroborates my change. My personality has changed completely. There was a time when I used to love making friends, but now I am a lot more subdued.
