What’s in your gut?

Icky but cool – cool from the perspective of open source data.  I don’t think I’ll be participating since god knows my gut gets enough study as it is, but I thought I’d share this because I find the research model extremely interesting.  I’m also certain that my primary care is going to flip over this.

From the project site:

http://www.indiegogo.com/americangut

The Human Microbiome Project and other microbiome projects worldwide have laid an important foundation for understanding the trillions of microbes that inhabits each of our bodies. However, opportunities for the public to get involved in such research has been limited. Now, American Gut gives you an opportunity to participate and to compare the microbes in your gut to those in the guts of thousands of other people in the US and elsewhere. American Gut is a project built on open-source, open-access principles. Our data are for the good of understanding and will be shared both with participants and with other scientists. Our experience has been that our best ideas and work come when we involve people in as many steps of our work as possible, be they scientists, educators, roofers, ultra-marathon runners or corporate leaders. Everyone has something to offer, whether their sample, their hypotheses, their analyses or their dog (yes, their dog, we will get back to that). The more we can understand the complex microbial ecosystems on which we depend, the more everyone will benefit.

  • 10,000 people needed – join us!
  • Our Team: 30 scientists with over 800 publications
  • See how your microbiome compares to our community and learn how you might achieve an optimal or more healthy gut
  • we start mailing out the PERKs (kits) in January

What is American Gut?
You’ve probably heard by now that the trillions of microbes living on and in our bodies are changing both the way we think about health and disease and even how we define Self. Ever wonder what’s in your gut? Ever wonder how your diet might shift your gut microbes (for better or worse), or how simple lifestyle decisions may have a dramatic impact on your gut and overall health? Ever wonder which microbes on your husband sometimes make him smell funny?

The gut is our main focus, but it is also interesting to look at oral, skin and even vaginal communities for several reasons. It might be possible to develop biomarkers–canaries in our corporeal coal mines that let us predict aspects of your gut health based on a spit sample or a reading (swabbing) of your palm. We know, for example, that arterial plaque shares microbes with the mouth but not with the gut. Could we use plaque samples to predict features of our hearts? Maybe.

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“latch on to”

Every now and then I do a search for “post lyme (disease) syndrome” to see if any new research results or information has been found.  Sometimes I find something interesting and useful, like this, Anti-neural antibody reactivity in patients with a history of Lyme borreliosis and persistent symptoms.  Often, it’s just rehashings of the “chronic lyme” controversy, like this Lyme Disease Complicates Doctor-Patient Relationship.  Despite its promising title, the story is actually less about the complications of the doctor/patient relationship for people who experience symptoms after standard treatment and more about a particular infectious disease doctor’s take on non-standard treatment protocols (the continuing use of antibiotics), and a caution that patients “latch on to” information on the internet to their detriment.

I found the doctor’s portrayal of how patients end up thinking that they have lyme or continuing lyme rather insulting.  It’s a significantly oversimplified one size fits all approach that paints everyone who wonders if they have reasons to consider lyme, treatment refractory lyme, undiagnosed lyme, post lyme, or “chronic lyme” as a boob who believes the first thing they read on a forum thread.  He also completely skips over the part that many of us, with or without a history of a lyme diagnosis, experience:  the doctors who are dismissive, invalidating of our symptoms and the impact they have on our lives, and who sometimes are just horribly uninformed.  That does happen, and when it does, it makes it a lot harder for a patient to be guided by that doctor.  I believe it has a cumulative effect as well, depending on how bad or how many bad interactions like this a patient has with health care providers, it can create a sense of deep distrust.  All of this is skipped over in the article, not even acknowledged as an afterthought or footnote.

I blame the interviewer to some degree – if this was meant to be about how symptoms of unclear etiology get in the way of doctor/patient relationships, then he did a poor job in guiding the doctor to discuss that.  I can’t help thinking maybe it wasn’t meant to be this but this was the label the editors slapped on the interview after listening to the doctor go on about how stupid and/or gullible patients are.

aspiring model

Anyone else read about Brittany Wenger, the 17 year old who won the Google Science Fair grand prize?  Her prize winning project is a neural network app that analyzes breast lump fine needle aspirate to diagnose breast cancer.  From the summary on her project blog:

The successfully implemented custom network is tested with 6,800 trials.  To assure maximum training, each sample is run through ten trials evaluated by different networks trained against all other samples.  The custom neural network achieved predictive success of 97.4% with 99.1% sensitivity to malignancy – substantially better than the evaluated commercial products.  Out of the commercial products, two experienced consistent success while the third experienced erratic success. The sensitivity to malignancy for the custom network was 5% higher than the best commercial network’s sensitivity. This experiment demonstrates modern neural networks can handle outliers and work with unmodified datasets to identify patterns. In addition, when all data is used for training, the custom network achieves 100% success with only 4 inconclusive samples, proving the network is more effective with more samples.

Aside from being thrilled that a 17 year old girl has kicked some serious ass and represented for all us “girls” in the too long male dominated field of science, I am quite literally tearing up thinking “Yes, this is exactly the sort of approach that needs to be developed for medical diagnostics!”  We have so many streams of data, so many bits of information, and too often each bit is considered separately, sometimes even by separate doctors.  Models which can include these multiple parameters, which do not discard “noise” but which include outliers are desperately needed.  They are more powerful and sensitive than how we currently do things, and it makes sense to develop and use them.  I’m excited to see this innovation.  Go Brittany!

Have migraine, will travel

It’s been a migrainey week, which sucks because I have a friend visiting (she’s in the shower right now, so time to catch up on some blogs) and it’s getting in the way of doing pretty much anything other than sitting on the couch with an ice pack on my head.  😦  Blerg.  I did manage to get out and get the mani/pedi, fun.  My toenails are now a lovely frosty plum.  Pretty!

My husband sent me an email, a call for recruitment for a migraine study at B.A.T.H.  (the granddaddy of all BATHs in fact).  So I thought I’d forward it along.  This is actually from the web-based research participation recruitment postings.

Investigation of Migraine Pathophysiology and Treatment Mechanisms using MR-PET

RESEARCH STUDY
Do you suffer from migraine headache w/Aura?

* You might be eligible for a brain research study on
migraine held at Massachusetts General Hospital

Participation involves:

* 2 visits to the MGH A.A. Martinos Center for
Biomedical Imaging

* 1 MRI-PET scan of your brain – the visit will
take 4-6 hours

* PET involves injection of radioactive tracer in
the blood.

* You will be paid up to $200.

Please Contact:
Caterina Mainero, MD, PhD.:
caterina@nmr.mgh.harvard.edu, 617-724 7746

Principal Investigator:
Nouchine Hadjikhani, MD, PhD.
MGH-NMR Center

Institution  –  MGH – Massachusetts General Hospital, Boston, MA
Principal Investigator  – Nouchine Hadjikhani, MD, PhD
Enrollment Information
For further information about enrolling a patient in this trial, contact the person below.
Name  – Caterina Mainero, MD, PhD
Phone  – 617-724 7746

busy bee

One week post op.  I’m weaning myself down off the prescription pain meds.  Difficult since my favorite OTC is Ibuprofen but it really does a number on my stomach if I take it daily.

Today, I found a place I might be able to live and job posting for a job that I could do.  Full time, which isn’t ideal, but then I remind myself that I did this job full time for nearly three years and if it hadn’t been so RIGID in terms of time, so unrealistic in terms of task, and so toxic in terms of atmosphere, I probably could have kept at it.  I’m trying to hold on to hope.

So today, I touched up the resume, wrote two drafts of my cover letter, and made a bunch of phone calls for new places to live.  One viewing scheduled for Wednesday – it’s a two family (not my preference) one bath (also not my preference) but it’s the top two floors of the house, there’s a washer/dryer IN UNIT (wooo!), the location is ideal, and the price is good.  A mix of pros and cons but definitely worth a look.  I managed to mention that I have publications when talking with the real estate agent.  Oh yeah, I’m a published researcher, that’s right.  It came up when I gave my husband’s name:  “oh, his last name is different” the agent remarked.  I replied, “Yes, well, I’m an academic and I had published some papers prior to meeting my husband.  My advisor told me that if I changed my name when I got married, it would mess up my publication history so I just kept mine.”  BOOM.  Take that!

I don’t usually boast about the research cred but if someone is going to be socially tacky enough to comment on married people not having the same last name in 2012, then I find it both personally satisfying and socially advantageous to turn that tacky faux pas into an opportunity for self promotion.

what are you waiting for?

Waiting is a common enough theme in this blog that I probably should make a category or at least a tag for it.  Here are some of the things I’ve been waiting for lately.

  • Waiting for Human Resources to process (i.e. find ways/reasons to deny) my health accommodation requests.
  • Waiting for an appointment with my primary care (this Wednesday) to go over the most recent documentation request from HR – I made an appointment  this time because of all the fruitless waiting I did last Fall with the initial set of accommodation physician documentation forms.
  • Waiting for results from my rather difficult to time 24 urine and “while you’re symptomatic” blood draw for histamine by products.  I have an  appointment this Friday, which I am trying to change to earlier so I don’t miss quite so much work, and so add to this list…
  • …waiting for the Endocrine clinic at B.A.T.H. to call me back.
  • Waiting for an EMG (also this Wednesday) on my totally screwed up right hand/wrist, which I totally screwed up by overuse at work and by waiting to too long to get it checked out.  It’s now not just an acute injury.  It’s a new trick for my body to do.
  • Waiting for an appointment with some genetics doc (next Wednesday) …this came out of the January appointment when I popped my hip out of joint getting out of the car, ended up being tacked on to the schedule of a Rheumatologist my primary care shares his office space with sometimes, and referred for checking out of the whole super bendiness/spontaneous dislocating/subluxing (subluxating?) stuff.  The appointment is to evaluate me (genetically) for Ehlers-Danlos syndrome.  I haven’t decided about whether to mention testing for a RET gene mutation – maybe I will ask my primary care about this on Wednesday.

What made me think of waiting was a post on Professor Lisa Gualtieri’s blog, which seems a decent blog.  I found it through an old article in the Boston Globe which was a recruitment call for patient bloggers for a survey research study (now closed, but a slide show of findings is here).  In her post Must waiting be inherent to medical care?, she gives what I guess can be called a taxonomy of waiting which patients experience.  Yup, seems right.  My least favorite part is the final step, “loop”.  That one kills me.

My strategies for waiting to be seen once I’m there include the following:

  • My primary care’s office is always backed up.  However, they are very good about letting you know how far behind they are if you call ahead.  I find this to be a good solution, and I respect that they are behind because my primary care has a lot of complicated patients and because he doesn’t rush through appointments with us.
  • I bring something to read, something to work on, something to play with, or someone to talk to.  I have played countless games of solitaire; written numerous pages of journal entries, letters, or poems; drawn on my iPad; listened to downloaded podcasts or episodes of shows like This American Life (interesting and informative).  It helps.  I feel bad for people who do not have access to mobile devices or engaging diversionary materials (e.g. books instead of insipid waiting room magazines), which help pass the time.  I have often wondered about starting some kind of book/tech drive at waiting rooms – E.R.s, O.R.s, and ICUs specifically.   One day, when I am not working, I  think this will be a project of mine.
  • I manage my expectations.  I do not expect to be in and out fast.  I think that this is easier, or at least comes more readily, for those of us with chronic illnesses.  We sort of learn to discard the stresses that we can, because there are so damned many of them.  If we let a one hour wait in the doctor’s office drive us over the edge, we’d have no resource left over for all the other things that are stressful in our lives.  This isn’t to say that it doesn’t get to us.  It does, but I think that if one were to calculate a “per visit freakout” ratio, one may find that the people in the many years chronically ill group inclined towards the lower side.  Dunno for sure, just a hypothesis.

So, what are YOU waiting for? How do you deal with waiting in medical contexts?  Have you found that your chronic illness has made you better or worse at being a patient patient?

anti-neural antibodies anyone?

I think I may make copies of this and start handing it out to doctors.  Maybe send a copy to that monumental d-bag I briefly tried as a primary care so many years ago in the New England Outback.  This is the one who made a point of telling me “I don’t BELIEVE in chronic Lyme” at my second appointment when I complained of fatigue, eye pain, new joint pain, headaches, and memory problems 4 months after treatment with oral antibiotics for an acute Lyme infection (btw, his mention was the first time I had heard the term).

You know what?   I amgoing to send it to him.  Because it so nicely calls out a particularly obnoxious fallacy, a

image of an "EM" rash typical of lyme disease on a woman's torso

Dyspatient's big fat EM rash. An objective sign of Lyme Disease, until it's faded. File under: "why you should always take a picture"

pseudoscientific belief system dressed up as science because of the class of people who tend to hold and wield it (i.e., those engaged in scientific disciplines/professions).  The “reasoning” of this fallacy goes:  there is no evidence (which I accept) for the existence of this, therefore I will deny the possibility or question of its existence.    Therefore I will deny any attempt to address the cause for it.

The “which I accept” part is the lynch pin of the fallacy.  What one person – doctor, teacher, cashier, or plumber – will accept as real, legitimate, existing, is too often an intangible and mutable mark, arguably as subjective as symptoms like fatigue and nausea.  Think of all the debate over when life begins or ends…we have doctors and theologists and “the rest of us” who have weighed in on this question of existence for as long as we’ve had a discernible existence and not only do we not have an agreed upon answer but we still don’t have good, broadly accepted parameters for the question of what “counts” as evidence and what doesn’t.

When viewed this way, it is clear that what is contended as various scripts from the lyme disease controversies are played out in various doctor’s offices is not a case of this theory vs. that, or the validity of a particular hypothesis….

    like patient s/p acute lyme infection continues to report symptoms.  Is it possible that the acute lyme infection has created some (continuing) pathological state?  If so,  H1:  continuing/chronic lyme; H2: immune response to lyme infection;  H3: effect of treatment for acute lyme infection; etc.

…because all of those hypotheses, hell ANY hypothesis is inconceivable if you will not accept that there is evidence, i.e. if you refuse to accept the existence and validity of the symptoms reported by the patient.  And so what it comes down to is that what is contended is not scientific and not medical.  It more properly falls into the domain of morality and ethics.  It is the validity of one person’s subjective experience over another’s, in this case based on socioeconomic factors.  And when a person’s well being and suffering is on the line, it is one of the worst kinds of misapplications of reason and pseudoscience that I can think of to allow such factors dominate.

Lengthy preamble, I know.  I plead lack of caffeine and a three day long battle with a tenacious touch of migraine.

On to the abstract.  Full text is linked to the title.

Brain Behav Immun. 2010 Aug;24(6):1018-24. Epub 2010 Mar 18.
Anti-neural antibody reactivity in patients with a history of Lyme borreliosis and persistent symptoms.
Chandra A, Wormser GP, Klempner MS, Trevino RP, Crow MK, Latov N, Alaedini A.
Department of Neurology and Neuroscience, Cornell University, New York, NY 10065, USA.

Abstract
Some Lyme disease patients report debilitating chronic symptoms of pain, fatigue, and cognitive deficits despite recommended courses of antibiotic treatment. The mechanisms responsible for these symptoms, collectively referred to as post-Lyme disease syndrome (PLS) or chronic Lyme disease, remain unclear. We investigated the presence of immune system abnormalities in PLS by assessing the levels of antibodies to neural proteins in patients and controls. Serum samples from PLS patients, post-Lyme disease healthy individuals, patients with systemic lupus erythematosus, and normal healthy individuals were analyzed for anti-neural antibodies by immunoblotting and immunohistochemistry. Anti-neural antibody reactivity was found to be significantly higher in the PLS group than in the post-Lyme healthy

Copyright 2010 Elsevier Inc. All rights reserved.

Sweating it out, part two

When I mentioned the night sweat thing at my appointment yesterday, the surgeon mentioned possible changes in the blood supply to ovaries after hysterectomy.  So like a mini-menopause? I asked – a minipause!  Although he is adorable, and although I’ve seen things approaching emotions on his face, I have to say that I’ve met few people who do stone-faced as well as my Nordic GYN surgeon.  Apparently “mini-pause” warrants stone faced.  And “it should pass.”  I knew if I pressed for scale of “passing”, I’d get evasion.  I don’t know, maybe it was something about him or just experiences with doctors in general.  Anyhow, I went home and looked it up after yet another sweaty (but not in the fun way) night.  An unscheduled hormone hop would also explain the HUGE migraine.  Hell, my body doesn’t even like the regularly scheduled ones, so you can imagine how it would feel about “minipause” ones.

http://www.ncbi.nlm.nih.gov/pubmed/15629673

    Ovarian changes after abdominal hysterectomy for benign conditions.
    Chan CC, Ng EH, Ho PC.
    Department of Obstetrics and Gynaecology, The University of Hong Kong, Queen Mary Hospital, Hong Kong, People’s Republic of China.AbstractOBJECTIVES: To investigate any change in the ovaries, including early follicular serum follicle-stimulating hormone (FSH) level, total ovarian volume, total antral follicle count, and ovarian stromal blood flow, in patients who had undergone abdominal hysterectomy for benign conditions. 

    METHODS: Fifteen women with abdominal hysterectomy and conservation of ovaries for benign conditions and who were between 29 and 44 years old were recruited to undergo three-dimensional ultrasound examination with power Doppler to assess total ovarian volume, total antral follicle count, and vascularization index (VI), flow index (FI), and vascularization flow index (VFI) of ovarian stromal blood flow. Serum FSH, estradiol, and progesterone levels were checked on the same day. The results of the assessments were considered taken during the early follicular phase if the estradiol and progesterone levels were basal. Fifteen age-matched healthy women underwent the same assessments on the second day of menstruation.

    RESULTS: Women with hysterectomy had significantly elevated serum FSH level and lower ovarian stromal blood flow indices, including VI, FI, and VFI, as compared with healthy women. The total antral follicle count and the total ovarian volume were similar between the two groups.

    CONCLUSION: These changes may suggest altered ovarian function after hysterectomy.

     

cut it out

During my lengthy visit at the neurologist’s last week, the nurse and I had much occasion to chat.  One topic, my not good nutritional status on account of the daily diarrhea, was discussed.  I mentioned that I am hoping that the hysterectomy will help at least a little with it, because maybe the endo and adenomyosis is – well, irritating my bowel.  I had some rectal implants (although those I think are more the pain on sitting down/pain with sex presenting ones rather than the non-stop intestinal cramping and pooping), so it’s not like my theory that my intestine is being shall we say “disturbed” by the endo and the enlarged uterus is way out there.

“I wouldn’t count on it” she told me.

And this is representative of the response I’ve received for a long time.  I distinctly recall the turf war between GYN and GI the time I was admitted for what turned out to be a ruptured ovarian cyst when I was 20.  Because I presented with what seemed to be mostly bowel symptoms (plus pain, which was attributed to a GI cause), I was admitted to GI.  But then they did the ultrasound.  Oh, well, in that case put her on the GYN service.  Except they were strangely reluctant to have me it seemed.  I waited on my unit for orders beyond the admit ones for a day.  And no, it wasn’t a holiday so that doesn’t explain the absence of doctorly involvement.  And yes, we’re talking no orders as in no diet order, no order for my routine meds.

After my lap in 2007, I let my current GI doctor have it.  I was pissed that he hadn’t even considered endo on my bowel as a possible origin for at least some of the bowel symptoms.  At that time, I had been struggling to keep weight on after a big drop down from 145 lb to 113 lb.  When the OR report showed endometrial implants on the rectum and intestine, I was livid.

And the sad truth is, I still don’t have a good, integrated approach to the way that the endo interacts with my GI system.  I have said repeatedly that the bowel symptoms do change with my periods, but in vain.  My discussion with Neuro Nurse was just another example of this isolated, overly reductionist approach to what I guess I’ll call “pelvic health” for lack of a better word.  There is a heavy element of sexism involved in the approach, but I think that is overlaid on the “-ism” form of medicine that is so common.  I ran into this studying psychology and cognition too.  The notion that brain systems and behavior can be legitimately studied and described as isolated units.  The old version of that would be phrenology, which fell out of fashion for a time only to be revived in a dressed up form when in vivo cortical mapping became a possibility.  So we talk of brain areas that “control” this thing or that.  When we arrange research protocols, which will eventually inform clinical diagnosis and treatment, we allow this reductionist approach to guide how and what we look at.  There is discussion within the community of the fallacies and pitfalls of this approach, along with even a sometimes “aw shucks, what can we do?” sort of acknowledgment that practicalities sometimes dictate an overly narrow window (or windows) of where we’ll look and what counts as “activation” or involvement.  But when you boil it down to the practical measures of how bodies are considered, studied, and acted on, the degrees of caution that such massive and often sketchy assumptions should seem to suggest (if not dictate) seem to be entirely abandoned.

And this is why I made a lousy researcher.  I was always too concerned with the “but what if” aspects.   “What if I look only at this measure and it turns out that measure is important too?” “What if this effect only shows up in this artificial condition and is not actually generalizable ‘in the wild’?”  A girl could drive herself nuts that way, or at least drive herself to constantly tweaking and retweaking a research protocol rather than just saying “ah the hell with it, this is good enough” and collecting data.

But that was, as they say, “academic”.  And in academia, you publish or perish.  And to publish, you need razzle dazzle significant results, which means often you just bite the bullet and collect your possibly impoverished data, write it up (and if you’re a good, careful person, put a “limitations of this study” section in your discussion section), and send it in.  I would hope though that the people whose jobs depend on rolling that research into practice would understand the (often unstated) caveats of applying what happened in controlled, “publish or perish” driven contexts to a real live complicated integrated person.

I’d hope.

out of bed experience

So here’s a fun thing.  And when I say “fun” here, I mean perplexing, interesting if you are of a certain leaning, and actually kind of personally troubling.  I.e., I’m being glib.  You know, sometimes I just like to spell things out lest I be taken wrong.

Anyhow, fun thing.  I sometimes have strange sleep sensations.  My brother and sister do too.  They overlap more with each other in the character of these things.  Let’s get to descriptions!  That is the fun (in the interesting) part.

My sister has awoken to find herself paralyzed on several occasions.  She cannot move anything but her eyes.  She tries to call out but cannot.  She also talks in her sleep – a lot.  I used to hear her in the middle of the night when we shared a room.  Some nights, when I couldn’t sleep or had been woken up by her, I’d talk back  to her.  I’d say nonsensical things, trying to influence her dreams “But ______,” I’d say on hearing her muttering over there in bed “we don’t have any cotton candy ice cream.  Why don’t you ask the hippo?”  I am not making this up or exaggerating – we had many nights where this went on.

My brother was a lot more, um, active.  He’d start with a little talking, maybe some singing.  Then came the distraught

picture of light blue bowl with potato chips

Is this IT?

crying, the walking around the house, opening doors, lifting covers, unfastening cabinets.  He usually stayed upstairs on the floor where our bedrooms and the 1/2 bathroom we shared was but I do recall him down in the main living area before too.  He usually was talking about having to find “it”.  He was insistent and very upset about not being able to find “it”.  One memorable night, he apparently had to pee during one of these things.  I caught him nearly peeing in my drawer and had to coax him into the bathroom.  As an aside, he told me years ago that he had a dream like the ones he had then and in it, he found “it”.  “It” was a blue bowl filled with potato chips.  OMG.  Guess someone was as little hypoglycemic at night.

And then there’s mine.  Mine involves feelings of floating.  Now, before we start talking “out of body experience”, let me be clear.  I am often quite certain my entire body is floating.  Only twice have I felt that I was “out” of my body.  One

Jean Lecomte du Noüy

It's not like this.

time about 15 years ago when I was also experiencing an “intruder” sensation – let me tell you, that is LITERALLY the scariest thing I can imagine.  Seriously.  The other time was less scary, it was about 9 years ago.  The moon was out and visible from my window, and I felt like I was floating up to see it.  This time I looked down and saw my body, but not a “normal” view.  It was translucent and I could see ribbons of darkness in it, like veins.  I thought something like “oh that’s the problem!” I had been thinking about how to stop being so negative, moody, angry, etc. (abuse survivor, remember?) “I’ll just pull that out!”  And I reached in and grabbed ahold and started pulling.  And it hurt – it felt wrong and uncomfortable and bad, like it was wrapped around my spine or something a bit more towards the front…something that in my sleep state, I conceived of as the core of my body.  I stopped, and I realized that if I wanted this thing gone, I would have to work on transforming it from the inside out rather than tearing it out and throwing it away.

Sounds all mystical and shit, huh?  But the short version is I do have the “out of body/floating body” sensation and usually it is bad.  Often there is a feeling of a “presence” in the room, which is SCARY.  Almost always, I am scared that I will become loose and fly away, not find my way back, or just plain scared by this motion that I cannot control – that I will get hurt or will drift forever.   Last night’s was more the last one.  I felt like I was moving up, up, up to the ceiling.  To the point where I even “felt” my hands scraping against the plaster.  Then I’d put my arms down and angle my body and I’d sink back to the bed, where I was relieved to be down.  But then my arms would drift upward and it would start over again.

Now the extra creepy thing about last night’s experience was the feeling of not being able to stop it.  I tried holding down my arms (it seemed to me, in this state, that since my arms went up first and that there was some feeling of leverage going on that if I held them down I’d stay put) and then my legs rose up.  I pressed and pushed hard to keep them down, but as soon as I’d relax they’d drift up again. I distinctly recall thinking “This isn’t possible, I’m sleeping,” and checking my legs with my hand – feeling along the backs of them to see if they really were at this insane angle, pointing up at the ceiling.  The hand reported that they were.

Eventually, what woke me up was after fighting many times not to drift up but drifting up anyhow, while pressed into the ceiling I tried to yell “help me”.  And woke up myself up from the effort.

I really don’t like these things.

I’ve looked them up before, usually only after I experience them – which thankfully is not often.  Maybe one a year or two.  But what I keep finding is research on “out of body sensation” with discussions of “autoscopia” (seeing yourself) etc.  But as I said, I usually feel quite certain that all of me is what’s moving, and the two times I’ve “seen” my body it’s been (a) disturbing and (b) not exactly an accurate or detailed representation of it.  More like “lump/presence in the bed that I somehow know is me because I feel a physical tethering-like attachment to it.”

Here are some links to articles to get you started if you’re interested in reading up on this sort of thing:

http://www.ncbi.nlm.nih.gov/pubmed/10487786

http://www.ncbi.nlm.nih.gov/pubmed/15382733

http://www.ncbi.nlm.nih.gov/pubmed/16571587

http://www.ncbi.nlm.nih.gov/pubmed/18621363