Fairy Tales Don't Always End in Happily Ever After
For many years, I heard about the "miracle drug" called Xyrem. People from the United States of America who used it were saying it contributed to the reason they regained the lives they had before narcolepsy.
Unfortunately, in the United Kingdom, it has been more challenging to get this drug on prescription because of how expensive it is.
Increased cataplexy attacks
3 years ago, I started having increased cataplexy attacks and more falls in public places. My sisters even joked that they needed to wrap me up in bubble wrap.
My journey home from work is usually 45 minutes by Underground, 10 minutes by bus, and a final 10 minutes walk home. One evening, I started my journey home feeling very tired. I stopped at Waitrose to do some grocery shopping.
I managed to get off the bus safely. But then, after walking a short distance, I lost control. I saw my grocery and handbag on the sidewalk, and I was surrounded by passers-by trying to help me.
Confusion, shock, and embarassement
Among the helpers was a homeless man who rolled up his bed so I could sit. Others gathered up my groceries. One woman noticed my medical bracelet and wanted to call the ambulance, but I told her I was okay. It was a confusing situation that left me in shock because this fall came without warning.
I could hear people continue to ask whether I was okay. I said out loud, "Oh my gosh! I can see this man twice, but it's not double vision. I am hallucinating." Everyone laughed and told the "identical twin" to get on one side. I felt very embarrassed but grateful for the support from the public.
Making the decision to start Xyrem
After the incident, I contacted my doctor to update him on how bad the cataplexy was getting. I was having 12 attacks a day on a good day and double on bad days. I had also been falling a lot.
Having been on so many narcolepsy medications over the years, Xyrem was the only medicine left that I had not tried. I was started on it in October 2019. There were reservations regarding its use because I also suffer from sleep apnea, which could be dangerous for me. To counteract any danger to me, I was monitored regularly via the PAP machine and phone calls.
High expectations for Xyrem
I was excited about this opportunity because I had heard that Xyrem makes people lose weight and that my life would change for the better.
To get used to the new drug, Xyrem, I spent the first week taking it at my mom's. The first dose tasted of salt and was disgusting to me. Nothing seemed to happen. I suppose that I fell asleep because the alarm for the second dose woke me up. Again no change. To counter the taste, I had to drink water and suck on a sweet after each dose.
Feeling the positive effects
In the morning, I felt like I hadn't slept much. This was usual for me. My sister mentioned that I didn't look groggy. However, I felt rather alert. This was a new, weird feeling which continued daily as I kept taking the Xyrem.
Another positive effect was that when I was out in public places, I did not fall asleep on the bus or train as I used to. This euphoria lasted for a month. I would stay awake in the day, but by 6 PM, I would be sleepy and tired. My mom assured me that being alert in the morning and tired in the evening was normal.
A third plus was the decrease in my cataplexy attacks: the fallings stopped. I was so grateful.
Adjusting my other narcolepsy medications
Then my neurologist lowered my stimulants and antidepressants as they said they would. That was when things changed for me. My cataplexy continued to stay under control, but my excessive daytime sleepiness increased, and I had to take naps in the daytime to cope. I went back to sleeping on the bus and Underground.
Holding on to the good memories
My fairy tale did not last. It ended just as it started! I have since been put on a higher dose of Xyrem. The month of ecstasy I enjoyed is now safely stored away in my memory. From time to time, I take this memory of being alert and feeling normal and replay it.
No two bodies react the same way to a drug. What works for one person might not work precisely for another person. It does not mean that it cannot be helpful. Having realistic views on medications is vital. Otherwise, you may be left disappointed.
How has narcolepsy impacted your ability to work?