"I'm having a stroke...wow, this is so cool."
January 28, 2007 5:06 PM   Subscribe

"I didn't know I couldn't speak until I tried to speak out loud. I could still hear in my mind myself saying 'this is Jill, I need help'...so when I tried to speak I went wvur wvur wvur and so I sounded like a golden retriever."

In 1996 neuroanatomist Dr. Jill Bolte Taylor had a rare kind of stroke (an AVM) that allowed her to maintain consciousness and analyze the effects of half her brain shutting down over the course of four hours. She was interviewed today (mp3) on Sound Medicine and discussed losing her language abilities and the ability to differentiate between herself and the outside world while gaining control over the rebuilding of her mind.
posted by ztdavis (36 comments total) 44 users marked this as a favorite
To avoid any pepsiblueness, down in here I'll mention that she wrote a book about her experience.
posted by ztdavis at 5:09 PM on January 28, 2007 [1 favorite]

MetaFilter: wvur wvur wvur.
posted by phaedon at 5:27 PM on January 28, 2007

Something like this (on a vastly smaller scale) happened to me last year.
posted by dmd at 5:50 PM on January 28, 2007 [19 favorites]

Congratulations on your recovery, dmd.
posted by jamjam at 6:15 PM on January 28, 2007

May I be the first to say: Narm!
posted by TG_Plackenfatz at 6:21 PM on January 28, 2007 [1 favorite]

dmd writes "Something like this (on a vastly smaller scale) happened to me last year."

Well worth reading. Somebody should FPP it, if dmd consents.
posted by orthogonality at 6:22 PM on January 28, 2007

I doubt it's worth it on its own, but if "somebody" can find a decent context for it, I'd be fine with that.
posted by dmd at 6:27 PM on January 28, 2007

CT scans are not very revealing of ischemic strokes.

Of four ischemic strokes involving three individuals, myself being one of the three, five CT scans only picked up one, and that single one was a repeat with added contrast enhancement radio-opaque dye.

Doctors somehow never seem to pass along that little tidbit of information when they say the CT scan was negative.

During non-stroke rehab for my spouse, we encountered another individual whose stroke had left her with the single word "one", with which she would reply, sometimes repeatedly in a pseudo sentence with intonation and inflection.
posted by Enjolras at 6:40 PM on January 28, 2007

An AVM isn't a stroke. It's a congenital malformation. When it ruptures and bleeds in the brain, that bleeding is a hemorrhage, often called hemorrhagic stroke because it results in death of nearby brain tissue.

Interesting post. I wonder how I could get a stained glass brain?
posted by ikkyu2 at 6:47 PM on January 28, 2007

Indeed worth reading. What a frightening experience to have had dmd.
posted by gomichild at 6:48 PM on January 28, 2007

dmd - wow. How long did it take you to fully recover?
posted by mrbill at 6:54 PM on January 28, 2007

gah, this stuff is so interesting but it makes me so uncomfortable to read/listen to, too. I don't know what it is exactly; I don't feel faint like people sometimes do when they see blood, or frightened like people sometimes do when they're surprised by mice or bugs, but I feel very squirmy and tense. Anxious, I guess. I dunno if that's the default reaction or specific to me because of my neurological issues.

I have epilepsy and experience aphasia during & after seizures (usually complex partial - temporal lobe); I also usually have some sort of hallucination leading into the event. It certainly informs my opinions about language, mind & world.

In any case, thanks for the links, and I look forward to getting through them :). also, there is some ancient material on my site about my epilepsy; it really needs to be updated & edited, but if you scroll down there is a little interesting material from a decade ago describing the first time I had a seizure)
posted by mdn at 7:08 PM on January 28, 2007

Wow, this was an amazing post -and thread.

I had a sub-archnoid bleeding-aneurysm/stroke last September 16th and and can relate I can relate all too well to what dmd and Dr. Jill Bolte Taylor survived, to every syllable discussed. My own stroke experience came at the end of an intensely stressful time in my life, as discussed in a MeTa thread. I thought I would die for sure or end up a vegetable, incapable of speech, writing or ordinary human functioning.

While in the Neurosugery ICU of St. Luke's Hostipatal here in NYC there were other stroke victims there, unable to speak. I remembered reading An Anthrolpoogist on Mars by Oliver Sacks, about the brain being compartmentalised and that with people, who survived brain damage, that the musical part of the brain was kept in tact.

I used to walk in the mornings down the hospital corridors with a lovely Chinese woman who made make silk flowers for her living. She was unable to talk at all due to a stroke. I had the idea that if I could encourage her to sing she might get her speech back, especially if I pointed to flowers and asked the colors. So we used to walk down the hallways singing the old kindergarden ABCD song that ends "aren't you very proud of me". And you know it worked. She's talking again now and so am I. :)

YAYYY recovering from a stroke!

I want to recommend the supplement magnesium citrate, it really helped me in my recovery process.

If she hasn't already heard of it I'm going to recommend Jill Bolte Taylor's book to my excellent neurologist, Dr. Carolyn Brockington.

Thanks for this post ztdavis.
posted by nickyskye at 7:41 PM on January 28, 2007 [3 favorites]

mrbill - who knows what "fully recover" means. I was back to what seemed like normal conversation in several hours, but for a week or so I continued to feel very strange - complex thoughts that were word-based were fuzzy and hard to hold on to sometimes - as compared to purely structural or abstract thoughts (e.g., a data structure or the call stack of a program I was debugging), which I had no problem with.
posted by dmd at 7:42 PM on January 28, 2007

dmd - thanks for posting that, that's pretty mind blowing.

I'm beginning as a neuroscience PhD candidate and it's extremely interesting to hear accounts of what someone experiences when there's a fairly serious systems failure but maintains conciousness.

I was discussing the near-death-experience 'bright light' phenomenon with a fellow grad student and we hypothesized that it was massive neuronal depolarization ('firing') when the spines rapidly degrade shortly after ischemia (loss of oxygen). I wonder how much of that 'yellow' was related to board-wide depolarization?
posted by porpoise at 8:10 PM on January 28, 2007

*oops, sorry about the typos, not stroke related, had two rum and diet cokes with the neighbors with dinner. :) [hic]

porpoise, interesting thought about the bright light and near death experience. In the Tibetan book of the Dead (Youtube version) there are 5 different light experiences mentioned: white, blue, yellow, red and green. I've always wondered what the biological explanation of the light experience was.

In my own recent near-death stroke experience there was a feeling of leaving my body because the head pain was so intense. It was an exit out of an inablity to endure the pain.
posted by nickyskye at 8:36 PM on January 28, 2007

Thank you all for this thread. dmd- well told. Thanks.
posted by pointilist at 11:20 PM on January 28, 2007

Woke up in the middle of the night and remembered to mention an important stroke innovation, a drug called TPA, Tissue Plasminogen Activator, which was initially used to help people having a clot related heart attack, however it has some serious side effects and must be given during the first 3 hours. It is used for an ischemic stroke, which is a blockage stroke, not a bleeding stroke where there is sub-arachnoid hemorrhage.

In my own stroke experience I found neither of the hospital emergency wards quick on the uptake about the stroke issue, rather like the article discussed in this blog.

Migraines May indicate stroke risk. Hormone therapy tied to more severe strokes. Depression doubles stroke death risk. Magnetic treatment (RTMS) may repair brain from stroke. (apologies for Fox news links).

Excellent online stroke resource, The Internet Stroke Center, with clinical trials, trials registry results etc.

Stroke warning signs video.
posted by nickyskye at 2:22 AM on January 29, 2007 [2 favorites]

An interesting anecdote that I heard was that for a few years some heart-transplant centers lowered the patient's body temperature to 4 degrees C (or so) under the hypothesis that there'd be less ischemic damage to the patients.

A few years later the center got lots of and lots of complaints from former transplant patients that they become entirely different people, ie., personalities were different and many were experiencing memory failure (inability to remember past events, but no difficulty acquiring and remembering new memories).

It turns out, after looking at animal models, that the decreased temperature caused spine loss - while many of the spines reformed in the same position and with similar receptor densities, many of the spines reformed at slightly different positions and had altered functionality.

I'm not intimately familiar with patients recovered from strokes - are similar phenomena (memory failure/personality change) also observed after stroke recovery?
posted by porpoise at 8:19 AM on January 29, 2007

well worth reading ^^
posted by autoverzekering at 12:16 PM on January 29, 2007

are similar phenomena (memory failure/personality change) also observed after stroke recovery?

porpoise, Speaking from my little experience, I can only imagine that strokes effect people differently based on the damage done.

Having the stroke was the greatest physical pain I've ever experienced in my life and it's scary to remember how awful it was.

My immediate thought when the pain first started that September Saturday afternoon was, "I'm having a stroke and I'm probably close to death." and can only aliken the agony to a feeling of the World Trade Centers falling down inside my head.

Post stroke there is an ongoing feeling of some desperation that at any moment I might lose my brain's capacity to think, speak and function. I love language, deeply love learning, reading and writing. Seeing the loss of language in other stroke survivors, the terrible confusion on their faces as they struggled to say something as simple as their name, is distressing.

Sharing here this last month or so in MetaFilter has been a way that I can read and respond at my own pace and deal with that fear, practise writing with people I respect, particularly for their capacity to be smart, savvy and articulate communicators.

Any twinge in my head or neck fills me with dread, not so much that "This might be It.", the end of my life, which I've come to some peace with, but that this might be the end of my life as a human and the beginning of my life as a vegetable. That ongoing anxiety is something I know I need to come to terms with, not just with a Living Will but a deep surrendering to the unknown and coming to peace with that.

In terms of communication acuity, which is improving with effort and practice, initially I struggled with spoken words, as if my verbal skills all of a sudden were more sieve-like and felt some depression too. First I experienced saying the opposite of what I meant on occasion and knowing it while saying it. That was weird, and embarassing, lol. There are gaps in my spelling and sloppiness while writing, which shock me when I go back to read what I wrote a day later.

Since straining can bring on a stroke, the act of real bellylaughing can bring up dread, so can stretching in the morning, coughing, sneezing or lifting something heavy and I feel fierce about wanting to laugh, that it's my right to laugh if I want to, even if it kills me.

The possible further danger of the procedure to examine the brain, the CAT angiogram and the anesthesia used, Versed, which causes amnesia, add to the burden.

Living with ongoing fear has an impact and managing that is something that I can imagine other stroke survivors must deal with daily on top of the brain damage.
posted by nickyskye at 1:46 PM on January 29, 2007 [2 favorites]

PS, Reading more of Dr. Jill Bolte Taylor's writing, I'm really inspired and heartened by her work.

Fun presents for one's neurologist. :)
posted by nickyskye at 3:31 PM on January 29, 2007

Jesus, how old are you? What caused your stroke?

I hope you feel you come across as a well-spoken, thoughtful sort of person, an excellent communicator. 'cause you are. Having you here has improved Metafilter.
posted by five fresh fish at 3:44 PM on January 29, 2007 [1 favorite]

Oddly, the morning lecture today was about recovery after stroke (albeit focused on damaged motor cortex). There's a surprising amount of recovery re-learning, re-wiring, and compensation that the brain can do.

It seems like intensive practice at whatever's been damaged (followed by deep wave [for motor] or REM [for cognitive] sleep) really helps the brain relearn other ways of doing stuff the damaged portions used to do.
posted by porpoise at 4:05 PM on January 29, 2007

What a kind compliment fff, especially from you. I have so much respect for you. Lol, I'm 642 years old. Actually, just plain 53. I went through chemo and radiation and it fried my blood vessels. The chemo+pain meds to get through chemo/radiation caused me constipation. I think the stroke was caused by straining. The neurologist thinks it may be something mysterious, some underlying condition but I'm confident she, who is much smarter and wiser than I am, is wrong. Because she's a brainiac in every sense of that word, I think my gastointestinal functioning is of little interest to her, lol.

porpoise, Interesting you said that about sleep because Dr. Jill Bolte Taylor also talks about the importance of sleep. How the hell is the brain repaired during sleep? What a wonderful thing. She apparently had brain damage on the left side of her brain, so it made her more mellow, in the now, less of an alpha, driven person. My brain damage was on the right side front and in the back a bit. Wonder what that made me, more driven? lol In fact, during the weeks after the stroke, along with intense anxiety, I also felt blissful, deeply loving and profoundly appreciative of the world. A strange combo.

Fascinating about anosognosia (denial there was a stroke)when there is damaged motor cortex. Oh dear, so the word recovery is over optimistic? Just re-wiring. Well, YAYY for brain plasticity then. :)
posted by nickyskye at 4:49 PM on January 29, 2007

Thanks for your personal stories. They're much more amazing than my original post.
posted by ztdavis at 5:29 PM on January 29, 2007

Ouch, the difficulty with language is readily believable given the damage was on the right side.

Sleep, it's hypothesized, allows consolidation. It's a fascinating field but there are still a vast number of unanswered questions.

The idea is, when you practice reading/writing or speaking/listening comprehension and exposition (or anything else - practicing motor control is definitely easier than language skills) you're activating (very complex) networks of cells. You may have improved performance after a training session, but those gains are likely not to be long-lasting (ie., a network of neurons repeatedly firing can lower the threshold for those neurons to subsequently fire).

Sleep, while we don't understand how, appears to help those neural circuits change the way they're connected to each other. For example, increase the number of receptors, or change (subtly) the receptor type on the 'receiving' side, or alter the way the 'firing' side decides to pass the signal on. If you're interested, a term to start with is "long term potentiation" (LTP). Sleep, somehow, promotes the formation of changes that are conducive to LTP.

If I was to speculate I'd suspect that since these changes take time, sleep somehow changes the 'background' transmission of signals, perhaps make them more orderly or less 'loud' and this gives the cells breathing room to make alterations to proteins at the synapse, cycle out different receptor types, synthesize proteins involved in strengthening synapses and get all of these into the right place.

Since there has been damage to a portion of a very complex network, there is a physical manifestation of that damage. However, because the network is so complex, it's possible that there are other connections that can route around the damaged area - they're there, but since they've never been used the connections aren't very strong. By invoking these 'work around' circuitry through practice and allowing the new connections to consolidate, the original damage can be routed around.

Also, it hasn't been so long ago when people thought that the brain doesn't regenerate or make new brain cells. Oh boy, how wrong that assumption was. There are two areas (olfactory bulb and hypothalamus) where it is now undisputed that there is constant neuronal birth and that (at least some of) these new neurons develop into fully functional neurons. However, there is also a lot of evidence that neurons can also grow around the damage and connect directly to some other neuron that it normally communicated to through an intermediary (such as a cell in the damaged area). In some pictures from experimental lesions in animals, you can see neurons grow out axons towards the lesion, 'see' the lesion, make a fricken 90' turn and just grow around the damaged area and re-connect with another neuron that it had lost contact with.

All the best, and I second the huzzah for plasticity!
posted by porpoise at 6:26 PM on January 29, 2007 [2 favorites]

Thank you so much for your stories, nickyskye and mdn. You have my admiration and respect.

I often feel that we neurologists do a pretty poor job of getting the word out; stories like yours seem very important to me, to help other people understand what you and folks like you have gone through. Please keep getting the word out!
posted by ikkyu2 at 6:46 PM on January 29, 2007

ztdavis , I disagree and found your post compelling. And apparently so did others. :)

According to my neurologist a CAT scan can be made quickly in the ER, so it's used, along with a lumbar puncture to detect serious brain damage. But an MRI is what is needed to detect detailed stroke info, however, it takes longer to get the results from an MRI and with strokes time is of the essence in treating them so damage is minimised.

One of the neat things my neurologist did was show me the MRI of my brain and talk with me, at length, about what was going on and her thoughts. Her communicating articulately was tremendously reassuring, as well as informative.

While in the hospital I was informed that an orgasm can trigger an aneurysm/stroke but there doesn't seem to be much info about that.

Felt queasy approaching dmd's and mdn's blog stories of their brain event experiences because the subject is still too close for comfort. But I finally got around to reading them last night, savoring every word. Wow. Thank you both so much for writing what you did.

dmd, interesting that your MeFi profile says you are or were a graduate student in cognitive neuroscience. (fun to see your travelling weasels and your beautiful brainy wife's wonderful brain video.)

mdn, your blog is very enjoyable. I really appreciate your writing about your experience with your own brain events. So you went through chemo too. I'm fascinated by your stating "vague elusive memories of the smells I get before a seizure" because I hallucinated smells a number of times as a child and wondered what the hell that was. Interesting your recommendation of the book, "The Man Who Tasted Shapes" by Richard Cytowic, MD. Synesthesia interests me both esthetically and biologically.

Understandably, there don't seem to be many stroke blogs on the web, yet. Maybe I'll start one and include links to others who've had brain events of the stroke/aphasia variety as a kind of casual database for survivors and neurologists.

Possible innovation, using NAD+ (NADH) in treating strokes.

I would have loved a cooling helmet after my stroke and made every attempt with ice packs to create one for myself.

Apparently folic acid fortification may have lowered stroke deaths. PubMed on this.

Don't know if this is of any use to anybody but there is the MyEpilepsy.com blog site, connected with the Epilepsy Therapy Project.

five fresh fish and ikkyu2, you both changed my life for the better when you shared in the thread about MSG and umami 1 1/2 years ago. fff, your feisty joie de vivre and ikkyu2, your ascerbic brilliance came with me to the cancer docs when I was first diagnosed, through surgery and some of the hardest, scariest days of my life. I needed your company and you were both wonderful companions.

Funnily enough, a connection between glutamate and stroke.

ikkyu2, I know you suffer from migraines and you probably know this already but have you tried magnesium/calcium citrate as a supplement? Perhaps it might be of use to you?
posted by nickyskye at 12:26 PM on January 30, 2007 [1 favorite]

Well, that's done. Just created Stroke Blog: http://allaboutstrokes.blogspot.com.
posted by nickyskye at 3:18 PM on January 30, 2007

I have feisty joie de vivre? How perfectly dreadful.
posted by five fresh fish at 9:28 PM on January 30, 2007

oh dear fff, guess I'm not the excellent communicator you thought I was? But in that thread you were feisty and playfully vital to me. :)
posted by nickyskye at 9:56 PM on January 30, 2007

You mistook cantakerous moody for feisty joyful. S'alright, I sometimes have trouble telling them apart myself.
posted by five fresh fish at 10:51 PM on January 30, 2007

Thanks for the kind words, nicky. I only get migraines when I neglect to drink my morning cup of coffee; if I do get one, a cup of coffee almost always sets me right.

On the rare occasion that it doesn't, I do have some tablets with magnesium and riboflavin kicking around, and they have seemed to help.
posted by ikkyu2 at 11:53 PM on January 30, 2007

thanks again for all the links, ztdavis, dmd, nickyskye -

I really enjoyed the podcast, especially the angle of her actively healing the brain, by choosing which connections to strengthen. She discussed things both from the angle of the fleshy organ and the conscious mind, and I found that really appealing.

Both as an epileptic and a philosophy student, I am always trying to get closer to understanding this aspect. But I have talked with neuroscientists who have no idea what I'm talking about (at parties or whatever; I don't bring up philosophy in the doctor's office) - to them it's all clear because we can see on the MRI where the activity is, etc. To me, that's precisely the mystery.

Anyway. I've heard that about coffee, ikkyu2, but when I actually get a migraine I can't drink coffee for about 3 days - normally I absolutely love it, but around a migraine, it tastes like thick bile. My migraines are probably all post-seizure, though (I can't be sure because sometimes they happen as I wake up, but it probably means I had a seizure in my sleep), so maybe they're a little different?
posted by mdn at 5:32 AM on January 31, 2007

mdn, one of my counseling professors, who is very into the interplay between the brain and the mind, highly recommended The Developing Mind: How Relationships and the Brain Interact to Shape Who We Are by Daniel Siegel. That one seems to focus mostly on how the brain & mind develop over childhood; he also has The Developing Mind: Toward a Neurobiology of Interpersonal Experience, which seems to cover more of the lifespan.

I haven't read either, but my professor was always fascinating -- and seemingly well read -- on the topic, so I'd trust her recommendations. They may not be exactly what you're looking for, but I thought I'd throw out the recommendations in case you're interested. It does seem like an amazing topic, and I'm kind of excited that a professor in my department is talking about it.
posted by occhiblu at 12:37 PM on January 31, 2007

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