My Body Is Trying to Kill Me
As I sit here in the Kenyan countryside in the 32-degree (C) heat, I find myself reflecting on the crazy 3 months it took to get to this point.
Back in London, I felt like my body was trying to kill me. The National Health Service did not seem to take my complaints seriously. I spent most of my days with debilitating headaches and dizziness. Imagine waking up with headaches, and they last all day long.
I was spending hours sleeping the day away because I was too weak from the dizziness to function. I dealt with this for 6 weeks before a blood pressure reading of 210/138 and a pulse of 138 finally got a doctor's attention.
Getting my blood pressure and pulse under control
It was challenging not to function, and I wanted to sleep all the time because of the headaches and dizziness. I was put on blood pressure meds, and after 3 weeks, the dizziness finally went away and the headaches became less and less.
It took 5 weeks to get my blood pressure stable enough for me to be cleared for travel. I booked my ticket to Kenya joyfully. Then just when I thought things were improving, my pulse refused to normalise, which resulted in the unthinkable: the reduction of my daytime stimulant medications.
My body stopped cooperating
I was finally on a good cocktail of medication. Or so I thought. For whatever reason, my body decided it didn't want it anymore.
First, my doctor lowered my antidepressants which meant a slight increase in my cataplexy attacks. This was manageable. Then when my pulse still did not decrease, my doctor decided for my stimulants to be reduced.
Going without my stimulants
Just as luck or life would have it, my pharmacy could not get hold of my methylphenidate, and I ended up going 7 days without it. Not being on medication caused me to go through withdrawal, which was rough. My personality changed. I was more impatient; I got aggressive and even had the shakes.
I was back on my stimulants for 2 days. Then the doctors decided to lower my stimulants to 18mg. I still couldn't get them from my pharmacy. Time without my stimulant medication at this point was 14 days.
I started drinking Red Bull to help stay awake. It effectively kept me alert, so I needed to have fewer naps, but after 4 days, I'd had enough of the taste and stopped taking it. Finally, 7 days later, the chemist called to say my pharmacy had my medication in stock.
But my relief was short-lived when I received a call from my doctor letting me know he was removing me from my stimulants and referring me to a cardiologist.
A silver lining
The positive among all the extra sleepiness and exhaustion was that my pulse rate normalised without the presence of the stimulants in my system.
After 20 years on stimulant medications, my body is now having to adjust to life without it.
Has anyone else had a similar experience? Has anyone else had their doctors take them off medication because it was harming another organ in their body?
What is the hardest part of coping with narcolepsy?