Benlysta #9 and some headache stuff

I had my 9th infusion on Monday. I felt OK during, but I’ve been pretty tired the past few days. It’s a give-in that it will make me feel like that, it just seems a little worse than usual. I can’t honestly say whether I feel “better” from it or not yet. The pain from the Chiari Malformation overshadows everything else. I can tell you that I don’t wake up in the morning feeling like I got hit by a car anymore, and I have days occasionally where I have a bit more energy, but I’m so focused on the intense headaches, I guess it’s hard to gauge what my lupus is doing. It doesn’t seem to be attacking anything, which is the important part.

There is one area of concern, though. My doctor informed me that my white cell count typically goes up and down, and that my blood test results from last month show that it is low. I wish she had pointed this out to me earlier. I feel like she doesn’t tell me things sometimes. I will call on Monday to find out what the results are for this month. I hadn’t been sick with a cold or anything, so it doesn’t really make sense. Wait and see, as usual.

My consultation appointment to see the neurosurgeon is finally set for next Friday. I get to see the head honcho instead of being passed on to one of his colleagues, so my case is being taken pretty seriously. It’s a 90-minute appointment, so I’m assuming it will be an assessment of all my symptoms, and possibly having some MRIs done right there, which would be nicer than the usual “go get an MRI in a few weeks and come back in a month to see the results” shit. I am so incredibly fed up with waiting forever. In the mean time I get to put up with agonizing headaches and a list of other crazy things. -End Rant-

My main concern is my white cell count and how that is going to impact when I can schedule my surgery. I’m already unsure when to schedule it as it is. It’s summer, and the summer heat makes me terribly sick. I am not crazy about the idea of recovering during the heat. But at the same time, I am also not crazy about waiting months to have surgery and continuing to feel the way I do, “eating the elephant one bite at a time”…but my white cell count will probably push it off til winter anyway. All in all, winter is the best option. But I don’t know how I am going to stand to wait that long, unless they can give me something to help deal with the pain and pressure and the fact that I want to throw up every time I eat, until winter rolls around.

All in all, it will be nice to talk to the NS and get some of these questions answered. I’m pretty anxious to see him.

Chiari in Charge.

This is from July 8th but I didn’t get around to publishing it til now.

I wanted to draw today. I have this shiny-new set of copic markers to which I’ve only acquainted myself. I brought all my supplies downstairs to start working, and I realized after sitting at the table deciding what to draw that I wasn’t going to be able to sit there any longer. I’m having a day where looking down is making the room spin. It’s really hard for me to spend time drawing anyway, I always get a really bad headache when I work on something, but today I couldn’t even start something.

I’m having more and more days where I can’t ‘start something’. I used to just get rebellious against the pain and power through it, but the pain is so bad that I can’t even get started. It’s not that I’m losing the ‘rebelliousness’, it’s just that the pain has reached a peak where it is impossible to power through anymore. If I were to just ignore it, it would progress into a ‘point of no return’ where none of my pain meds would help it, and I’d probably throw up.

It is against my nature to give up on something. It is leaving me incredibly frustrated. Technically I’m not giving up, I’m just unable, but it still feels the same. I feel like I don’t know what to do with myself, because the only things that don’t lead to a raging vomit headache are standing and walking, and I can’t do that all day long.

It’s not just pain either. It’s a pressure my head fills with that is hard to describe to someone without chiari. It makes my ears throb, and the back of my head pulse. It dulls my hearing and narrows my field of vision. It throbs and pulses even more when I turn my head. My teeth hurt. My head feels too ‘full’.

I’m not entirely sure as of yet why it has gotten so much worse, or what the exact cause of such symptoms might be. After researching and talking to other chiarians, I have a few theories.

My most recent MRI report from September 2012 states that there is no blockage of Cerebrospinal fluid. I don’t think that is entirely true. Perhaps at that moment there wasn’t, but I have a syrinx, which is evidence that at some point, fluid was trapped somewhere. Since that was almost a year ago, it is probably time for another MRI to look for progression. If I do get trapped CSF fluid sometimes, that would explain the pressure and throbbing, and the ‘full’ feeling.


I got my blood test results back from my Endocrinologist.

My Thyroid is ok, no Hashimotos.

Estradiol levels are normal, no perimenopause.

ACTH and renin are low, but that has come up in the past. He stated that my Addison’s is well-managed so all I have to do is continue my same dose of Florinef and Cortef.

My Ferritin is better, just have to take a maintenance iron supplement so it stays that way.

So that means any of the weird symptoms I have had aren’t endocrine-related. It’s good to rule that out so when I see the neurosurgeon we can talk about the probability of everything being chiari-related. When I saw a neurologist he was so ready to just chalk all my symptoms up to my other issues, when in reality, my other issues are starting to level out and what’s left is chiari.

My headaches were really bad yesterday. I woke up with one at 5:30 yesterday morning and had it all day, and at one point was trying not to throw up. It is overcast this morning so the change in the barometric pressure must have been an influence. Once the barometric pressure makes up it’s mind I’m ok, it’s the change itself that seems to bother me.

I actually had a relatively good day the day before yesterday. I’m not sure what I did right, as I never am, but my headaches were minimal until bedtime, and I was able to sit and play Mario video games with my brother and his friend without any trouble. Usually when I sit to play I get a headache during, and I just deal with it, but it was a nice “vacation” on Monday. It made me aware of what is within the realm of possibility if I have surgery. It’s easy to not realize all the things that could be helped if I have a successful decompression. The only activities that don’t give me a headache are standing, walking, and lying on my side completely flat (with a pillow) everything else causes a headache. When I say everything, I mean anything from sitting, to bending over, to doing my hair, to showering, to swishing mouthwash, and laughing, and the list goes on. And they aren’t ‘just headaches’. They’re worse than migraines. They are absolutely unforgiving and really hard to get rid of them once they start.

It would be nice to come out the other side with my symptoms reduced even by 70%.