"a homeless consciousness"
November 29, 2012 5:28 PM   Subscribe

Susannah Cahalan has a month-long gap in her memory from when she was struck by the little known disease anti-NMDA receptor encephalitis. Cahalan, a New York Post journalist, wrote an account of her ordeal shortly after it happened, and went on the Today Show to talk about it. Now she has written a book on her experience called Brain on Fire and wants to make people aware of the disease, and that was the subject of a follow-up segment on the Today Show. She is not the only person to have been afflicted. There is more information about the disease and the book on Cahalan's website. She was interviewed at length on NPR's Fresh Air earlier this month. Novelist and essayist Leslie Jamison has a well-written review of Brain on Fire and puts it in its literary context.
posted by Kattullus (23 comments total) 21 users marked this as a favorite
I heard her being interviewed. Wow, was that interesting!
posted by ThatCanadianGirl at 5:38 PM on November 29, 2012

Looking at this post, I realize it's a bit much. If I would start with three links, I would start with the video in the first link, then read Leslie Jamison's review and end with the Fresh Air interview. The other links are worth reading, wathching and listening to, but it was my journey into this particular story.
posted by Kattullus at 5:41 PM on November 29, 2012 [2 favorites]

I only read her account of her ordeal. Wow, what a story. She's really lucky that she had such great family support. I can see how others would end up misdiagnosed and locked up, especially if poor.
posted by shoesietart at 6:11 PM on November 29, 2012 [4 favorites]

It almost sounds like anti-NMDA is the anti-MDMA.

It sounds nothing like that!
posted by Sys Rq at 6:18 PM on November 29, 2012

"I remember nothing and I'm here to tell you the story!"
posted by crayz at 6:20 PM on November 29, 2012 [2 favorites]

Brent Bambury interviewed her on Q on CBC. She would have dead very soon had that one doctor not given her that pen and paper task that resulted in an accurate diagnosis. The demonic obsession angle was interesting, too.
posted by ThatCanadianGirl at 6:32 PM on November 29, 2012 [1 favorite]

Cahalan, a New York Post journalist

Only a month long gap in her memory? Pshaw. The Op-Ed guys have her beat by years.
posted by mzanatta at 6:41 PM on November 29, 2012

Oh, I remember that Q interview, ThatCanadianGirl! It was just chilling. Glad for her that the doctor discovered what was wrong in time.
posted by hurdy gurdy girl at 7:00 PM on November 29, 2012 [1 favorite]

That Q interview (which I somehow missed this week.)
posted by maudlin at 7:12 PM on November 29, 2012 [2 favorites]

So if this disorder affects NMDA receptors, and drugs like ketamine and PCP are NMDA receptor antagonists, would this basically be like an organic ketamine overdose?
posted by DecemberBoy at 7:23 PM on November 29, 2012 [1 favorite]

This reminds me quite a bit of one of the theories regarding encephalitis lethargica (the syndrome described in Oliver Sacks' Awakenings) - the possibility that antibodies, possibly those to some strain of streptococcal infection, could cause an autoimmune attack on dopaminergic neurons.
posted by raygirvan at 7:26 PM on November 29, 2012

Among the limbic encephalopathies, anti-NMDA is supposedly the more common, but in my training we saw a great deal more of anti-GAD encephalopathies. People who were having continuous seizures for weeks. The one lady we even got to stop seizing—eventually. But she was a shell of a human being after that.
posted by adoarns at 7:28 PM on November 29, 2012 [1 favorite]

DecemberBoy, I'm just hypothesizing, but based on info here, whereas ketamine and PCP block the NMDA receptor, the immune system armed with these antibodies would seek to destroy cells displaying the receptors. So slightly different (although an initial step in the process might include the blocking of the receptor with the antibodies)...
posted by Tandem Affinity at 7:37 PM on November 29, 2012

My brother lost a lot of his memory due to a head injury, complicated by a brain tumour (I don't know the exact details, just fragments he has mentioned; he doesn't like talking about it.).

Anyway, net result is that he doesn't remember most of his first year of university or much of high school. Entire people, relationships, years, just gone. I...can't imagine it. Luckily he says he remembers the people close to him, just not events and such, and he's had some really good freinds help him reconstruct things, but fuck. I just can't imagine, five years, just gone.
posted by Canageek at 8:03 PM on November 29, 2012 [1 favorite]

WHOA! I worked on the newspaper with Cahalan in college. She was the only reporter in town at the time—and while she was still in school, no less—to score an interview with kidnapper Michael Devlin. Granted, questions were raised about how she was able to pull off that coup; there was some controversy about her possibly not having identified herself as a reporter... (And, well, she does still work for the New York Post.) But still, girl's got balls.
posted by limeonaire at 8:16 PM on November 29, 2012 [2 favorites]

That paper is fascinating, as is this post. What a horrible affliction, but it seems the saving grace is that victim can't remember much about the symptoms.
posted by Blazecock Pileon at 8:20 PM on November 29, 2012

Wow - the link about the Columbia student is the most interesting to me of the links I've gone through so far. It suggests this condition results from an immune system response to a teratoma (a tumor that can include brain tissue, often situated near the ovaries - thus the disease mostly affects women). The immune system makes antibodies to attack the brain tissue of the teratoma, and the antibodies go on to attack the person's brain.

It also says some the doctors think the number of cases is rising, not just that we are detecting them better.
posted by LobsterMitten at 9:10 PM on November 29, 2012

I have someone in my extended family who is suffering from a rare autoimmune disease called Wegener's granulomatosis, which has been giving him all kinds of problems — not just the disease, but the cure itself, which essentially involves treatment with powerful immunosuppressives that have caused very serious side effects from which it seems unlikely he will recover.

Millions of years of an evolved immune system are an absolute force to reckon with, when angry.

Still, he's fortunate that a drug was approved in the past year that more specifically targets the cells that are the root cause of his troubles — the previous medication was essentially blunt-force chemotherapy that would have been even more devastating.
posted by Blazecock Pileon at 9:21 PM on November 29, 2012

Ah, no, sounds like that was a slightly older understanding - from your second link -
Dalmau and colleagues (1) coined the term anti-NMDA receptor encephalitis and characterized a neuropsychiatric syndrome first recognized to occur in young women with ovarian teratomas. Anti-NMDA receptor encephalitis is increasingly recognized in males and in children, as well as in the absence of tumor.
posted by LobsterMitten at 9:25 PM on November 29, 2012

I caught the Fresh Air interview last week and found it absolutely fascinating. Not only to experience and to continue dealing with such a thing, but to have to address the fallout — the emotional, financial, and physical toll of it all — must be immense.
posted by iamkimiam at 11:53 PM on November 29, 2012

I suffered a short-term memory loss of about 48 hours due to a concussion I sustained in a skiing accident. 48 hours was scary enough. To this day, I remember it like this:

I was lining up for the first table-top in the terrain park at whatever resort I was skiing at. I had left my group of friends to ride in the park for a while. Just as I was hitting the ramp, I saw some kid come shooting out of the trees making a direct path across my landing zone. I had barely enough time to get the beginnings of a snowplow started before I was airborne and bailing out wildly trying to make sure my skis didn't hit the kid first. As it was I landed on the top half of my back, on top of the back of the kids skis. Rocked my head into the ground pretty hard.

I ended up another 50 feet down the hill from the kid and was up instantly to grab the kid and take him to ski patrol to have his ticket yanked, but halfway to him I stopped because I realized...I had no idea where the hell I was. I'm not sure when it clicked I actually had a head injury - probably later in the mountain clinic, but I remember just standing there kind of dazed trying to figure out how the hell I had got there and who I was with. Which was no one, at that moment.

Some amount of time later I ended up in the mountain clinic at the base of the resort. I still had no idea where I was, so I walked in and told them that. Apparently my pupils were all kinds of wack because the doctor put me on a stretcher right away and started doing a bunch of stuff, I don't remember what really. At some point she started asking me questions starting with simple "what is your name...where are you from?" and getting quickly to the much-more-difficult "who are you here with...do you know where you are?" It was kind of frightening to realize that A) I didn't know what day it was and B) the last day I could remember - at all - was 2 days before what day she was telling me it was.

I ended up having to make an awkward call to my mom where first the doctor explained that I was OK but had a pretty bad concussion, then I had to ask her if she knew who I had gone on a weekend trip to Vermont with. She called a couple friends in NYC, one of whom thankfully knew who I had gone with, and started trying to call them. They had left their cells in the car though so I spent the rest of the day being kept awake by the medical staff until my friends were finally found and we were reunited. They would eventually tell me about when we had left the city, our drive up, the first night / day we had spent together and the whole next day we had been skiing and that night too. I had to take their word on it because to this day I still don't have a single memory after leaving work on the Thursday evening we apparently drove up.

So, my heart goes out to anyone with a more chronic kind of memory loss, because just losing mine for a couple days was freaky. Losing your memory is kind of like losing who you are, in a way. Would not recommend.
posted by allkindsoftime at 1:56 AM on November 30, 2012 [8 favorites]

It's a terrible, terrible disease. Dealt with it in my family. Diagnosis was not easy, had to go to 4 or 5 neurologists, with Stanford and UCSF working in concert (eventually sending samples to Dalmau--a small community of specialists, indeed) to figure it out/treat it. It was very tough not to lose hope that a diagnosis and solution could be discovered in time.
In our family we're still not sure what the cure was, exactly. Doctors threw just about everything they had at it: plasmapheresis, IV-Ig, Steroids, Anti-B-Cell medications and some other things. (oh, and removed a small lung tumor.) None of it seemed to work.

But it did work. Or did it? Healing seems to have occurred most when we got all of the extended family involved in care months after the last treatment would have had any effect, according to our neurologist. I am only incidentally raising the spectre of the futility of all treatment absent a loving network of support. It's a confusing disease and we live in its shadow still, though recovering day by day... Thanks for this post. It's still hard to work out what happened during that time, even for those of us not "directly" affected. I encourage those of you caring for the ill, and especially those caring for loved ones with any cognitive disorder... take care of yourself as well.
posted by architactor at 2:11 AM on November 30, 2012 [6 favorites]

My Rx poisoning in late 2003 left me with an essential blank for roughly 18 months before and 18 months after the incident. Three years, gone. What I know about those years comes from anecdotes, medical files and other paperwork. The author is very lucky. I did not have a support system; actually, the few people who should have been there for me disappeared.

(Nine years later, I'm still disabled and unable to work. But I can walk and talk now.)

One month.. pft! Try three years.
posted by _paegan_ at 9:21 AM on November 30, 2012 [1 favorite]

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