still looking for a pattern

When this first started I thought there was a hormonal pattern because the first couple of bad days seemed to coincide with ovulation. Through my reading I've learned that ovulation is when estrogen is highest, and estrogen excites the temporal lobe. Progesterone, on the other hand, calms the temporal lobe. So some women with seizures will use progesterone supplements to help calm their seizures. As well, some women find that as they enter menopause, their seizures calm because of lower estrogen.

But after the first couple, they seemed to deviate from the ovulation pattern. Also, in all my zillions of blood tests they also checked my hormones and didn't find anything unusual.

Even so, I still keep coming back to this idea of a hormonal connection. So today I decided to plot it out. Luckily I track EVERYTHING about my health these days so it's relatively easy to plot it. Please ignore my crappy graph-drawing skills.

Here I've only graphed out the "bad" days, as well as the first day it started happening, which was 10 days before the first bad day.

So they definitely are spread out, but only between days 5 and 17 of my cycle, or roughly half of my cycle. In the other half of my cycle, I have not had any bad days.

Since it has only been 5 months it's too soon to know if it will hold, but it's interesting. Or maybe it's just random. :)

well then.

I don't think the meds are helping.


If anything, they are making the episodes slightly milder. But not much. Not enough to be worthwhile.


I've been on them for a month now and I thought they were helping at first, and until a few days ago I hadn't had any "bad" days or strong episodes. But then on Sunday I had the first bad day since starting the meds. Four pretty strong episodes that day and general feeling of crappiness. They weren't as strong as previous bad day episodes, but strong enough.


That was Sunday, and on Monday I had one strong one and just now (Tuesday) I've had a very strong one. Sitting at my desk in my office: strong disorientation, deja vu, dizziness, warm tingles all over my body, followed by a headache.


Not only that, but the meds are making me sad. I cry far more often and more easily than normal. I described it elsewhere as having my emotional baseline lowered. My happy isn't as happy and my sad is more sad (and frequent).


I'm worried that if I tell the neuro that the episodes are slightly milder, he will want to increase the dosage. When that thought first occurred to me, I wanted to cry.


I see him next week and I'm going to tell him all of this and I hope there is a better solution than increasing the meds, because right now the emotional side of it is manageable but if it increases I'm not sure that it will be manageable. :/

Carbamazepine Week 4

This will probably be the last med-progress post I do unless something changes, as I seem to have adjusted to it pretty well.

I'm definitely more emotional than I was before. I'm not sure if that's the med or my current stress load. I cry more easily these days... little things make me teary right now. Med or stress or both? Hard to say.

I'm also exhausted all the time. Again, it's hard to blame the med when I have stress and am still not quite 100% from my flu (feeling much better in general, though one of my glands is still not back down to normal size). Or maybe it's just the February blahs.

Overall, not as bad as it could have been.

I have to go get my blood tested next week to make sure the med isn't adversely affecting my blood cell count, and then the following week will be back to the neuro for a follow-up.

Still no big episodes since Jan 13, but the small/mild ones are still happening. Mostly they are just like a passing feeling... so if it stays like that's it's manageable. Still disorienting sometimes. And sometimes I lose my train of thought because of it. There are days when it seems like they're coming and going all day and I keep losing my spot and have to re-orient myself mentally. So if you're talking to me and it seems like if fade out for a second, that's why. But most days are ok.

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...

Carbamazepine Week 2

As of Tuesday, I'm up to the full dose (for now) of the med.

For the most part I've been feeling ok, though it seems every time I increase it I have a couple of rough days where I feel more sad/emotional than normal. It seems to level out after a few days.

It also seems to make me more tired. Last night I slept a little over 8 hours but still feel exhausted and emotional today, with headache and scratchy throat too. Maybe the meds, maybe stress, maybe hormones, maybe that cold that's going around. Or all of the above. Hard to say.

We'll see how the next week goes now that I'm on the full dose.

Mostly I just want to curl up in my jammies and watch netflix for the next couple of days, but that's not an option, so I'll keep plugging. :)