Author: Tonya

Trigeminal sounds like a marathon, doesn’t it. Or a graduate school entrance exam. I wish. Instead it’s a stupid neurological condition I suffer from (whose full name is Trigeminal Autonomic Cephalgia, or TAC) which causes for no apparent reason hideous headaches that feel like someone is stabbing you in the temple repeatedly with a hot poker along with sinus congestion and swelling on that side of your face. (I’d link to a description of it if I could, but the condition is so rare, the only info available on the internet is for medical specialists).

Friday night I came home and was so tired from my work week, I’m embarrassed to say, I fell asleep on my futon while reading. It was only a twenty minute nap, but in that twenty minutes, a TAC headache began to come on (you almost always wake up with them; they happen during sleep, for whatever reason). It was just the beginnings, so the searing pain was not in full radiance, so I quickly downed a couple of Excedrin with a can of Coke. It went away. But then I was scared to go to sleep, knowing full well I’d likely wake up feeling like my head was on fire. So, I sat on my futon trying to force myself to read until 3:00 in the morning, when I no longer could stay awake. I bunched several pillows up against the headrest and tried to sleep sitting up. Something makes me feel like, in part, the problem comes about because of the recumbent position of your head during sleep. I despise sleeping upright but tried it anyway. I was wrong though; I was blasted awake two hours later by the ice pick / fever / mass sinus congestion on the right side of my head.

Since my last experience with one of these things, I’ve visited a headache specialist, who prescribed three different medications — I was to try one, if that didn’t work, another, then a third last resort if the first two didn’t work. The old meds, which were prescribed for migraine headache (since that’s what my old neurologist mis-diagnosed me with), either didn’t work at all, or in the case of one — Maxalt — after making me go completely numb from the waist up, took the most brutal edge off the stabs, but kept the underlying duller pain and sinus-like symptoms intact, and then the stabs would return every eight hours like clockwork. A box of four Maxalt pills costs me $25 after insurance copay, and I’d go through an average of eight pills for one headache episode. So, $50 headache. The expense combined with my neurologist’s shrieks when I told her how many of these blood vessel constrictors I’d taken — one to two are supposed to kill a migraine completely and the pills can be potentially dangerous since they work by constricting the flow of blood to your brain — and her inability to look beyond the possibility that my headaches may be something other than migraines, sent me scampering to another doctor, this time a headache specialist at Columbia University’s Headache Center.

So my new neurologist re-diagnosed me, with TAC, and gave me as I said three meds, since there are different forms of TAC and each responds to something different. The first is Indomethacin, and is basically a massive dose of Ibuprofin. I tried that one. Happily, after about an hour and a half it began to kick in. And, unbelievably, it worked completely! The pain and facial swelling and congestion were completely gone; no remnants like with the Maxalt! I was ecstatic. I thought one dose and it’s over! But that was yesterday.

Today I woke up with my head on fire again. According to the package insert, I’m allowed three doses per day, but I’m so not in love with the idea of taking Indo at all. It can cause stroke and heart attack and a whole host of stomach problems. The sword-fight in my skull necessitated another dose regardless. But this time it took two hours to work and then the pain didn’t completely go away. I was so upset. Not my miracle drug after all.

I thought of taking the second med — injectible Imitrex (another blood vessel constrictor, like Maxalt, but faster-working and supposedly more effective for TACs). Freaking out over being able to effectively stab myself in the thigh, I forced myself to assemble the little shot dispenser and study the instructions, only to realize the sample he gave me had long expired. (Since it’s a liquid, I guess it doesn’t last long). And of course he didn’t give me a prescription since he wanted to see first if the sample worked. These headache episodes always happen on long holiday weekend — always! I thought of calling his answering service and leaving a message for the doctor on call to phone in a prescription, but then I also didn’t want to mix medications and it hadn’t been long since I’d taken the Indo. Massive anti-inflammatory and blood vessel-constrictor don’t seem like a good match.

Enough edge was taken off by Indo that I decided to go out and get some fresh air for once this weekend. So, I went to this Brazilian festival in midtown. In celebration of Brazil’s upcoming independence day (the 7th), they had a big street fair replete with food, music, and of course dance.

 

A televised concert the huge crowd gathered to watch.

 

I wanted to try something Braziliany for lunch, but all those people eat is carne, carne, and more carne!

 

If I ever go for Carnival, would I survive?

I finally found these little cheese-filled fried doughy things.

Which I had with a can of this, which tasted like cherry-flavored gingerale. Pretty good!

What would a Brazilian festival be without sambistas! There was hardly any place to dance, though, the streets were so full. They should probably have some risers set up so onlookers bearing cameras could sit down and watch the commotion without standing right in the middle of the band, leaving no space for the dancers.

Another band, on a side street. I really liked this one, called “The Berkshires Samba Group” — very fun percussion. I bought their CD.

I didn’t join the samba mosh pit– my head was hurting too much, but was fun to watch!

Mmmm, dessert! I don’t know if these candy-covered fruits had anything to do with Brazil, but I justified a chocolate-covered banana kebob anyway…

Now I’m home and the dull pain is back and getting stronger. I took another dose of Indomethacin. Pain is abating, but I’m afraid to go to sleep…