Digging Through An Empty Chest

I live in a country where sleep specialists are rare.

The struggle for narcolepsy care in developing nations

I don't expect Xyrem or Xywav to make it here any time soon - for good reason. It will be misused, and will be weaponised, by the uneducated public, and by the academically educated but socially derelict public. Where does that leave me, though?

The trial and error of cataplexy medications

When I started to first fall asleep and crumple into a pile of clothes every time I laughed or felt nervous, I was lucky enough to find an experienced neurologist who was able to diagnose me with narcolepsy.

The medication trials started.

Methylphenidate and imipramine was the first combination.

Methylphenidate, at the low dose I was taking, did little.

But the imipramine was godsend - initially. Mild thirst as a side effect at 25mg per day, but completely solved the cataplexy. I was able to laugh again. I was able to play sports. I was able to walk down the stairs.

The joy lasted four weeks. After that, the cataplexy started to return with a vengeance.

A week later, 25mg did nothing for me. We raised it to 50mg. Problem solved, miraculously.

The thirst was starting to become an issue - one that I could handle by always carrying a water bottle, but still a much smaller issue than succumbing to the forces of gravity any time I so much as chuckled.

Dealing with narcolepsy medication tolerance and severe side effects

And again. 4 weeks of heaven.

1 week of a descent back into the underworld.

We repeated the process and went up to 75mg. The thirst was getting hard to manage feasibly. I could go a total of 8-9 minutes without needing a glass of water.

When, 75 failed, we went up to a 100mg. At this point, I was basically perpetually thirsty.

The only time I wasn't parched was when water was in my mouth. And the 100mg also impeccably failed within a month.

I'll never understand exactly why this happened. I wasn't really growing much. The only explanation I can think of is a gradual onslaught suffered by my hypocretin producing cells, until there were none left.

The mental and physical toll of alternative treatments

The next few years involved multiple doctors, multiple tests, and multiple medical combinations. As a ripe 18 year old on SSRIs, I discovered the sexual side effects of anti-depressants.

It was crippling, and destroyed me mentally - something I'll address later.

Finding a fragile balance in early adulthood

The combination of 40mg of Paroxetine and 200mg of Modalert was the best I could do in my early 20s.

It dealt with 50% of the excessive daytime sleepiness, and maybe 50% of the other symptoms (I have all symptoms).

Night time sleep was terrible in terms of quality. It was the best I could get, however, and went unchanged till early 2021, when I cut down the dose of Paroxetine to 20mg and noticed no difference in symptoms.

In 2023, I went back to methylphenidate, about 50mg a day, and noticed that it did a much better job of keeping me awake and alert for most of the sunlight hours.

I'm still here. Still waiting for a treatment to be approved in India.

Life pre-narcolepsy is becoming a foggier and more distant dream as the pages of the calendar flip. Maybe one day, I will get to experience Xyrem or Xywav or something that will make my life somewhat normal again.