Weekend of Trigeminals And Festivals

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…


  1. I love Brazil! I went there for my honeymoon. No worries, girl — plenty of things to eat besides the carne in Rio. I think maybe there was just overkill because of the fun atmosphere of the street fair? Do you eat fish? I had the BEST fish ever at a little sidewalk cafe right on the shores of Ipanema.

  2. Thanks Erin! Oooh, you’re so lucky to have gone there for your honeymoon. Yes, I love fish — so if and when I ever go will definitely be looking for that sidewalk cafe!

  3. And the carne stand was run by Colombians, anyway… didja check the flags and name? 😉

    Try here for *real* Brazilian recipes, in English: http://www.maria-brazil.org/brazilian_recipes.htm

  4. Thanks e2c — I noticed that after I posted that one picture but decided not to take it down! They had food stands lining two avenues so I guess there weren’t enough Brazilian restaurants in NY to fill the entire two blocks, so they just made it into a Latiny kind of theme…

    Oh and thanks for the recipe site too! I can’t cook but recognize some of the food hehe:) :Â http://www.tonyaplank.com/tonyaplank/photo_journal/index.php?level=picture&id=144

  5. De nada, Tonya – and I can’t cook either, but I can do enjoy eating. (The site with the recipes belongs to a friend of mine.)

    Your feijoada looks yummy, too.

  6. Get well soon! I love the pictures.

  7. Thanks Ariel 🙂 After combining meds today, I am finally feeling a bit better, although it’s now nighttime and time for the dreaded sleeeep! I feel like I’m in that movie Nightmare on Elm Street or something… Still, I feel like I should consider myself lucky; some people have to live with this every day whereas I only get these about every six months or so… knock on wood!

    Anyway, I’m glad you like the pictures 🙂

  8. The festival looks really fun! So colorful and alive.

    Have you tried any homeopathic remedies for your headaches? A friend of mine gets migraines (different, I know) and she’s started drinking a concentrated acai juice that’s made a huge difference. She used to get something like 15 migraines a month. Now, with the juice, she might get one or two. And my mom swears by acupuncture, chiropractors, massage, etc. Homeopathic remedies often take more trial and error than you’d like, but when you hit on the right treatment, they can be really helpful.

  9. I was thinking of you over the weekend and hoping you were able to bypass the worse of your headache. Hope the meds combo is still working.

  10. Oh thanks so much you guys for the concern 🙂 I had a tiny one this morning but it soon went away, so I think the nightmare is now over (for this time). I’ve met some people who emailed me after seeing my previous posts, though, who live with this — day in, day out — horrible! I’ll see if anyone has tried homoeopathic remedies, Melinda! I wish I knew what even causes this — the doctors tell me they don’t know; it’s just a condition… Anyway, thanks again for the concern 🙂

  11. Hi Tonya! I’m so glad you’re feeling better. I’d freak out too if I had to apply an injection in myself! I hope the 1st one works for you…
    That was so nice that you made it to the festival! I decided not to go because I didn’t like any of the bands playing and it would be too crowded, but your pics are really great, and I always love reading about other people’s impressions on my culture. (by the way, what kind of picture is that with the Colombian flag and all? hahaha I know it wasn’t on purpose, but many americans think that we speak spanish and all the countries are the same thing…)
    I love pastel (the dough filled with cheese) and the guarana (the only soft drink I drink) too!
    I went to a very good brazilian restaurant here that has more than just carne or feijoada (and it has really generous portions, and it has a delicious passion fruit mousse as dessert!), we can go together anytime! It’s called Brazil Brazil (ah, the creativity!), at west 46th street if i’m not mistaken.
    Oh and the candy, we do have it there, that kind of thing reminda of childhood and amusement parks, where they usually have that type of caramelized fruits.

  12. Tonya, glad to see that you’re feeling better …. I used to have serial migraines, and can’t even begin to imagine what these feel like.

    FWIW, the guaraná might have helped – it’s got a fair amount of caffeine…

  13. Hey!
    The Independence day here is today, so no classes to me!
    I see you tried pastel and guarana – I love pastel, seriously. I gotta confess it’s not the healthiest thing on earth, but it’s damn good.
    and you are of course still planning on coming here, right? 🙂

  14. I suffer from the same kind of headache…haven’t found the cure either. Zomig takes it off in less than an hour but get re-bound headache the next day. I found this website by ‘googling’ “blood vessel constrictor”. -go figure- I’m desperate trying to find something natural that would help. (may be an ax right thru my neck) Good luck to you too!

  15. Thanks for the info, Elena! I’ll ask my doctor about Zomig next time I’m in. For me, the Imitrex and Maxalt work the best, but they don’t take the pain completely away; they just dull it substantially (and sometimes not so substantially), which is better than nothing. Rebound headaches don’t sound good either though… Thanks for writing and good luck to you too — and please let me know if you find anything that helps. And if I do, I’ll definitely post about it!

  16. I was just diagnosed with TAC. I think the neurologist was sort of wrong…I only have attacks that fit the TAC description about 30% of the time. The rest of the time I think they are more accurately described by “trigeminal neuralgia.” Anyway, I refuse to use pharmaceutical drugs. They are always toxic and will always make you worse off in the long run. Ibuprofen makes my attacks WORSE. What DOES work? Getting the gut emptied out using a plain water (I mean distilled or cleaned by reverse osmosis–never use tap water) enema, followed by fasting for a day, then using fresh raw green juice (like spinach+a few carrots+celery or kale+cucumber) and sticking to a diet of fresh raw fruit ONLY for breakfast, then plain lowfat or zero fat yogurt for lunch, then for supper a fair sized salad with flax oil and nutritional yeast, raw spinach, sprouts, can of beans (garbanzo or red or black or pinto or other). I can get away with a LITTLE bit of junk (chips or some candies, but nothing really bad, and very small amount). When I do this my TAC attacks STOP. Not much fun eating this way but it’s better than the alternative. Saturated fat seems to be a bad actor in these, so must be kept to a minimum. Dairy and wheat and fake food coloring, for me, also provoke attacks.

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