Dealing with a bunch of symptoms: rash, sun sensitivity, swollen lymph nodes, headaches, and stomach

restlessangler said:What about taking Dilantin long-term? Someone mentioned they've been on it for years without issue, but I’ve read elsewhere that it can be hard on the liver (if memory serves).

When treating headaches, continuous, long-term use of Dilantin isn't typically the standard protocol. The goal is for the medication to thin out the frequency, shorten the duration, and dial down the intensity of the attacks.

Usually, after a few months, you evaluate how well the drug is working. From there, doctors consider a gradual taper to phase it out.

Before starting Dilantin, it's wise to get baseline labs—specifically a full blood count and liver function tests, along with other routine screenings. While on the medication, periodic monitoring is necessary, primarily focusing on complete blood counts (keeping a close eye on white blood cell and platelet levels) and liver enzymes.

For most people, the drug is well-tolerated.

As long as you stay on top of those regular check-ups, there shouldn't be much cause for concern.

Just checking in...
Yesterday was rough—I had this awful headache that just wouldn't quit all day long..
The pain was constant, almost like a dull pulsing at times, centered right above my left eye and stretching from there down toward my ear... it felt like someone was actually crushing my brain for a few moments.

When I finally got home last night, I grabbed some Advil (it was the only thing I had on hand) and the pain didn't really let up until I drifted off to sleep..

Honestly, I'm a little anxious about today... hoping it doesn't start back up again. It’s been a long time since I've felt anything quite like this..

I have an appointment with my hematologist tomorrow to figure out what's going on and decide on next steps..

Just checking in, almost a year later...
Unfortunately—since we Americans are famously bad at following through sometimes—I haven't actually finished my follow-up exams for those lymph nodes.
I still have the referrals for the Mayo Clinic to get some biopsies done.

I've got a lymph node under my arm today, and about two or three months ago, a new one popped up behind my jaw near my ear—it’s just sitting there now. It swelled up a bit for a while, then went back to how it was, and now it's just steady again...

The headaches are still hanging around, but I've tapered off the Dilantin and am just sticking to Advil whenever the pain hits. It works about 80% of the time, so I can live with that. I decided to stop the Dilantin because, after a while, I realized I was becoming incredibly sluggish—my speech and my thinking were just... totally slowed down.

As for the stomach pains, they hardly ever show up anymore—maybe two or three times a year—but I think that's mostly because I'm not doing as much physical labor lately.

And the rash... well, here is the photo I took today. I honestly expected it to start clearing up since the sun isn't as intense right now, but that hasn't really happened. I'm heading to my doctor tomorrow to grab a referral so I can see the dermatologist again. The main difference from last year is that I spent some time at the beach this summer, even though I was constantly reapplying SPF 50. My skin used to peel quite a bit, so it feels slightly different than last year, probably because I don't have several layers of dry skin left in that spot...





I'm posting this just in case anyone else is dealing with similar issues—please feel free to reach out if you are, so you know you aren't alone...

Just wanted to give you all an update,
I had my biopsy done and just finished up the follow-up consultation today.
It turns out I have discoid lupus, and now I'm heading to the hospital for some more testing—just to make sure it hasn't progressed into systemic lupus...
I tried asking for more specifics, but I don't really have the full picture of what we're looking at yet.
Honestly, I'm just exhausted... I think I'm going to take a few days off to myself and just try to put this out of my mind for a little while..