Carbamazepine Week 3

What a week!


It was my first full week on the full dose of meds. I was incredibly busy and stressed at work, pmsing, and adapting to being on the meds. On Thursday I started feeling sick, but I wasn't sure if I was actually sick or just needing some downtime. By Friday it was clear I was actually getting sick. Headache, body aches, feeling feverish, swollen glands, fatigue. I spent chunks of Friday and Saturday in bed, resting and napping but not feeling better.


It is flu and cold season and there are lots of bugs going around, but even so I rarely get the flu (last time was in 2006). Red flag.


When my neuro gave me the prescription he said, "If you get a rash, stop taking it and call me." So of course I had looked that up, along with all the other potential side effects. My med can cause a thing called Stevens-Johnson Syndrome, which I've nicknamed the Death Rash. It causes rashes and blistering all over the inside and outside of your body and can actually kill you. But what the websites told me (that the neuro didn't) was that a few days before the Death Rash appears, flu-like symptoms appear... exactly the flu-like symptoms I was experiencing.


So my thought process went like this: "I never get the flu. What are the odds I get a flu just two days after hitting full dose on these meds... what if my symptoms are pre-Death Rash symptoms, not an actual bug?"


Then I was paranoid. So on Sunday, still not feeling any better, I decided to go to the doctor. I also opted for emergency (might as well capitalize on the P1 status!). Walked in and said, "I might just have the flu, or I might be having an adverse reaction to my new medications."


Luckily they took me seriously and they did a bunch of blood tests which included my carbamazepine levels in my blood and my blood cell count, as well as things like mono and some STIs. Of course there is no direct test for flu bugs or pre-Death-Rash so the doctor had to use his best judgment. He told me that as far as he could tell, it was just a flu. But if I get a rash, "that changes everything."


Five days later... no rash, and the flu seems to be gone (though the glands in my neck are still enormous).


If the med is affecting my blood cell count, that could affect my immunity. In any case, no Death Rash.


I do think the meds are helping my "episodes". At least, I haven't had any significant ones since starting on the meds. It may be too soon to say still, but even the mild ones are milder and less frequent than before. I was having clusters of strong ones roughly monthly and now it has been a month since the last cluster. So far so good...