Voriconazole Sucks

Just wanted to start off saying, that since I started the voriconazole, I’ve had some weird side effects. For starters, I feel really floaty, like out of it floaty. Secondly, the visual stuff sucks. My vision is much worse. From time to time I’ll see stars just randomly. Even wearing my glasses doesn’t help much. The nausea has come back again since I started this hellish anti-fungal.

They were not joking about the side effects.

I’m pretty sure it’s interacting with everything else that I have to take right now, so I guess it’s just going to be another push through it scenario.

On the bright side, my face does seem to feel better. Waking up, I’m not greeted with the immediate this all sucks feeling, which is a welcome change. The weird feelings I’ve felt in my face has somewhat shifted to periodic burning pain. Like 10,000 paper cuts everywhere. Or like I’m chewing razors. The swelling inside of my mouth seems to have lessened just a tiny bit. The feeling of my face seems different, less swollen.

Another thing I was always dealing with was just being really really itchy. Especially on the top of my head. Anies the other day took a look at the top of my scalp, and noticed around the front top of my scalp to the top, there are brownish clustery bumps. In the past, I’ve gone to Dr. Schleve whom is my dermo that’s been helping me since 2016. Typically our game plan was just inject kenalog into the lesions on my face, or freeze off these strange “growths” on the top of my head. But with the shift of things focusing on the Aspergillus portion of this, steroids going forward will be a definite last resort.

Steroids in general shut off or lessen the immune response. Oral, or topical. So I think we need to focus more on either removing some of these cysts in my face again, or using an anti-fungal that can target the Aspergillus. Most sites don’t have much data on topicals that may work, but a visit I had a long time ago, he prescribed a huge tube of Ketoconazole. I can’t say for certain if it’s helping or not. Jury still out.

Another thing is I would get these red little bumps all over my face and scalp. About 5 weeks ago, I bought a shaver specific for bald people to just keep the sides of my head. In the past everytime I got a haircut, typically the day after these red spots would start to erupt. Nothing really seemed to calm them down. I’m not sure if it’s the Voriconazole actually starting to work or not. They say it takes at least a week for Voriconazole to be effective.

Since the focus has become mold/fungal, I got some medicated shampoo with a head scrubber. The first time I used it, my entire head just burned. Since this is the first time using it, maybe that’s what’s been plaguing me. I mean in the past 4 years, I’ve been on nothing but antibiotics. Perhaps it’s just a playground at this point for mold/fungus to grow.

As for the surgery recovery, I reached back out to my ENT’s office since the pathology came back with the hidden surprise, I asked them to write a prescription for Vanomycin powder, and Amphorectin B. Not to be taken orally, but mixed into my sinus rinse bottle and used to try and kill off whatever is left up there. I just want to hit this from all angles. If you were going through the things I’ve had to go through, you’d do it too.

I’m still bleeding. Which is weird. Surgery was roughly 2 weeks ago. Every rinse I’m definitely getting stuff out of there. Blowing my nose is one thing that is helping get whatever the fuck it is out of there. But I’ve noticed that it’s not snot. It’s brownish/blackish chunks. I’m pretty sure there’s some dried blood, but it’s concerning because it’s super sticky. Hopefully they agree to the meds I asked for. I left a message for an appointment callback, but as per usual, they never call back. I reached out to the NP, which I did get a reply, but it was vague and really unhelpful.

Maybe there is more we have to do? Yes, my face feels better, but I just don’t want to keep going through all this year after year.

So I guess it’s a wait and see game.