SUNCen Feeling in Thirty-Nine

Howdy my friends, how are we all doing this Wednesday evening? Things are continuing to be good here. Randy has a big day at work tomorrow so we will see what happens then.

I had my two dr. appointments this morning. My rheumatologist was at 9....or was supposed to be, but they didn’t end up seeing me until 10:15 ugh lol.

So on that front, all of my numbers are still looking good. We are adding another anti-inflammatory, Celebrex. I took it before and it helped so that’s good. We are also going to start reducing my hydroxychloroquine. I take 200mg twice a day and he wants me to go down to one and see how that does, and then if I’m still holding strong, I can try coming off of it completely. There’s a lot of risks involving the eyes that come with taking plaquenil, so if we can get me off of it, then that will be great. We’ll just see how my body responds. I just have to see an ophthalmologist to get my eyes current state checked. It’s been a few years since I’ve had them checked. I’ll do that in a couple weeks.

Finally left there, had already called the neuro place to let them know my first appointment ran long, which they were fine with. So drove up there and got checked in. I saw the NP of the main dr, which is generally fine. We talked about a lot of stuff, she asked my history and all of the symptoms I was feeling, had felt, etc.

I could see the gears in her head turning. She first of all mentioned that I could do some physical therapy for my occipital neuralgia, which had never been suggested to me before. So we got me set up for that. Then after going through all the stuff I deal with, she kind of went hmmmm.....looked something up and said, I think you have SUNCT. In my head I’m like WTF is that? haha, but I just said oh....I’ve never heard of that.

So if you look it up, it’s Short-lasting, Unilateral, Neuralgiform headache attacks with Conjunctival injection and Tearing....SUNCT… lol. So she read all the information to me and the signs and symptoms and I’m just sitting there like what the FUCK this is what I have! To a T....like there’s nothing on that list that I don’t have. It was pretty fucking surreal having something so SPECIFIC be told to me that I could possibly have.

It’s kind of along the same lines at the Ehlers Danlos diagnosis years ago. I knew I had a problem but I didn’t know WHERE the problem started. Once I found out that I had a connective tissue disease, it made more sense.

This makes SO much more sense now and we can take that information and treat the disease as ONE instead of trying to chase the three of them around and only making things worse. I’m already taking Oxcarbazepine to help with the TN and the mood stability, but I’m only taking 600mg a day. So we’re going to start increasing that amount. We’re going to do 600mg twice a day and then see if that makes a difference. If not we’ll try another one that works similarly.

On top of that, we’re getting a new MRI done. It’s been 6-8 years since I had one so we’ll see what we can do there. I was also given samples of Nurtec ODT. She said I can take that one every other day as a preventative, rather than using it as an abortive.

So there’s a lot going on for sure. Things aren’t as great as I want them to be. But we’re still making progress. It’s just mind boggling that after all these years, I can still get a new diagnosis. But anyway, so that was that. We came home and that’s that.

I’m super freaking tired though so I’m probably going to go to bed pretty early. Randy usually works at 3, but it seems like a lot is going to be going on tomorrow. District and possibly regional manager is going to be in the store tomorrow, and District Manager told Randy to go in at 1 and not 3.....Soooooo yeah it should be interesting.

I hope you all have a good rest of your week!