23 replies to this topic

[eww]

This week in my online Psych class we're learning about sleep! Woohoo! There are a few basic (and I mean BASIC) paragraphs about sleep disorders in the text but the week's discussion topic is a case of a man who killed his mother-in-law and claimed to be asleep during the act. He was acquitted or the charges were dropped or whatever. Apparently the man suffers from RBD and turned himself in to the police. Anyways, the discussion basically circles around should he be held legally responsible for his actions. It was highly uncomfortable for me to see all the posts (it's an online class with a discussion forum) that say it's impossible to drive somewhere asleep, he wouldn't have such awful dreams if he wasn't psychologically unbalanced and so on. I posted far more indepth things about PSGs, sleep stages and at one point I used several articles i have on differences in the dream content of people with sleep disorders to counter all that bull*BEEP*. It's awkward but I think it'd be even more so to "come out of the Narc closet" and I really don't have to deal with that for the rest of the semester. I would be happy to get further into it if they would engage in dialogue with me but no one has responded to any of my posts. They post around my responses. Grrr.

[Irishhh]

This week in my online Psych class we're learning about sleep! Woohoo! There are a few basic (and I mean BASIC) paragraphs about sleep disorders in the text but the week's discussion topic is a case of a man who killed his mother-in-law and claimed to be asleep during the act. He was acquitted or the charges were dropped or whatever. Apparently the man suffers from RBD and turned himself in to the police. Anyways, the discussion basically circles around should he be held legally responsible for his actions. It was highly uncomfortable for me to see all the posts (it's an online class with a discussion forum) that say it's impossible to drive somewhere asleep, he wouldn't have such awful dreams if he wasn't psychologically unbalanced and so on. I posted far more indepth things about PSGs, sleep stages and at one point I used several articles i have on differences in the dream content of people with sleep disorders to counter all that bull*BEEP*. It's awkward but I think it'd be even more so to "come out of the Narc closet" and I really don't have to deal with that for the rest of the semester. I would be happy to get further into it if they would engage in dialogue with me but no one has responded to any of my posts. They post around my responses. Grrr.

They aren't responding because your responses are in depth and intelligent. You're talking about things they don't understand, so why should they argue? You'd only make them look stupid. So rather than test the waters, they're staying on deck.

I would love to read the articles you posted. To read about the differences between those w/ sleep disorders vs those with not and their dreams. Please post!

Oh, what does RBD stand for?

[eww]

RBD= REM Behaviour Disorder. It's where you act out your dreams. Lack of proper REM atonia. Think pretty much the opposite of cataplexy.

I'm attaching a few of what I think are the most relevant articles I have. I have quite a collection of narc-related articles, so if you want more, let me know and I'll see what I can do.



Oh. And thanks for the comment about the lack of responses. I hate it when I'm all ready to *impart some knowledge* on the ignorant little wankers and they go all silent on me. I was all up on my high horse and everything... LOL.

Attached Files

•  Dream_Content_in_Patients_with_Narcolepsy__Preliminary_Findings__1998_.pdf   288.48K   18 downloads
•  Dreams_in_patients_with_sleep_disorders__2009_.pdf   161.81K   10 downloads
•  The_association_between_narcolepsy_and_REM_behaviour_disorder_RBD__2005_.pdf   126.98K   7 downloads
•  Story_like_organization_of_REM_dreams_in_patients_with_narcolepsy_cataplexy__2008_.pdf   247.78K   16 downloads
•  Nightmares__A_new_neurocognitive_model__2007_.pdf   278.68K   7 downloads

[Bafflegab]

It's funny, or not depending on the situation, but one of the more common and well-known side effects of Ambien is sleep eating and other physical activities (e.g., driving, walking, sex, and engaging in conversation), so I guess I'm a little surprised at the reactions of your classmates. Ambien is a hugely popular sleep aid, and with 30 million people in the U.S. taking some sort of prescribed medication for sleep, you'd think people would be a little more aware. Good luck with the class, and keep up the activisim by information!

This is from the Web site, Medical News Today. It's dated June 30, 2009.

"Some people who take the fast-acting sleep-aid zolpidem (Ambien) have been observed walking, eating, talking on the phone and even driving while not fully awake. Many often don't remember doing any of these activities the next morning. Similarly, this drug has been shown to awaken the minimally conscious into a conscious state. A new study by Georgetown University Medical Center (GUMC) researchers may help explain why these "awakenings" occur.

The study, published online in the Proceedings of the National Academy of Sciences Monday, suggests that while some powerful brain circuits are shut down with zolpidem, the powerful sedative activates other circuits when deprived of activity.

"Brain cells or neurons are highly reactive to incoming activity throughout life," explains Molly M. Huntsman, an assistant professor in the department of pharmacology at Georgetown University Medical Center and corresponding author for the study. "When brain activity is silenced, many neurons automatically react to this change. We see this in our study which suggests that inhibitory neurons responsible for stopping neural activity are themselves shut down by zolpidem. The excitatory neurons, responsible for transmitting activity, are then allowed to re-awaken and become active again, without monitoring because the inhibitory neurons are 'asleep'."

Rodents are especially dependent upon their whiskers to explore their environment; for the study, researchers trimmed the whiskers of mice (while under anesthesia). They then studied the region of the brain responsive to whisker movements to examine activity-dependent brain circuits. After removing the whiskers and depriving neural activity, the inhibitory neurons that normally don't respond to sedation by zolpidem underwent a change, becoming more sensitive. The researchers posited that these neurons are shut down and, in turn, not able to monitor other brain circuits.

"This was really unexpected. It appears the receptors on some inhibitory neurons were changed and were able to be inhibited by zolpidem, preventing them from performing their normal functions. We merely wanted to use zolpidem as a tool to examine which type of functional inhibitory receptor is expressed in certain neurons. Yet it turns out that sensory deprivation in the form of whisker trimming is enough to alter the receptor composition expressed in these cells." Huntsman says.

Researchers say that while the study suggests that zolpidem shuts down active neural pathways and perhaps then triggers others, the activation of this trigger is unknown.

"Nevertheless, the paradoxical activation of brain circuits by a powerful sedative definitely needs more attention in additional studies both human and in animal models," Huntsman concludes.

Other authors of the paper include Peijun Li of GUMC and Uwe Rudolph of McLean Hospital, a Harvard Medical School affiliate. The authors report no related financial interests.

This work was funded by a grant from the National Institutes of Health.

Source:
Karen Mallet
Georgetown University Medical Center"

[Stacy D]

What great references! I'm starting to think that maybe I've had Narcolepsy for a really long time and it just recently got unbearable. I've always had very vivid dreams that involved a lot of interaction with others and could certainly be described as bizarre. I've also been able to "control" my dreams for a very long time. I can consciously direct my dreams and can usually wake myself up from a nightmare because even though I am asleep I am very aware that I am dreaming. Sometimes I am so in control of my dream and it is so realistic that I later end up confused because I don't know if I am having an actual memory or just remembering a dream. Does anyone else experience this? I am so new to this and am still trying to figure out what is a symptom and what is my usual brand of crazy.

[Saraiah]

Hi Erinn and all,

Erinn, I encourage you to just keep educating people, even if they ignore you at first, as long as you feel up to it. I remember 20 yrs ago when I took a Women's Studies class with a mix of students, including some young men involved in fraternities who felt that feminism and women's liberation was stupid and worthless. I carefully kept sharing my own personal experiences, and why the idea that women are equal to men was so incredibly important to me. Although I fit in with no one in the class, close to the end of the semester, the entire class gave me a standing ovation in response to one of my most heartfelt explanations. Sometimes, people will finally respond to the fantastic person that you are. And if not, you're giving them the opportunity to actually encounter a well-reasoned and empathic point of view.

Stacy, I too can control my dreams and wake myself out of nightmares, though it was years before I learned to do that. I also have a hard time sometimes remembering whether I've done certain tasks, or whether I only dreamed that I'd done them. I don't have the experience of wondering whether whole events or conversations that I've dreamed have actually happened, but I'm curious to know whether other PWN do.

Saraiah

[eww]

I do.

If my dreams are completely bizarre then I don't even have to think about it, but dreaming about letting the dog in/out, taking her for a walk, going grocery shopping or having an argument with someone often throws me for a loop. I also have dreams when I'm fully aware that I'm dreaming and can control things.

[psocoptera]

In college, I used to turn off my alarm and go back to sleep to finish certain dreams, because they were more real than being awake. Also, sometimes I felt the need to go back into them and change the outcome. I brought my dad back to life in a dream where he died (the hospital called and said it was a mistake), because it was just too weird with him dead. I have also been angry or uneasy around certain people, because they showed up in my dreams and we argued or something weird happened. I usually know it was a dream, but it doesn't help as much as it should.

Some of those articles were interesting. Do normal people never move during REM or is it just really rare? It just doesn't seem likely that a person would get a dx of RBD just from acting out a couple of movements.

[Stacy D]

I can't tell you how freaking ecstatic I am to have found this forum! There are others like me! It's almost too good to be true. Wait, am I awake? Ok, yes I am.

I am always checking the fridge to see if I actually did the grocery shopping. I have also gone back to sleep to complete a dream. Today I woke up crying and stressed because I dreamed they told me I didn't have N, there's nothing wrong with me, I just need to suck it up and stop being lazy. Not a far-fetched dream at all if you've ever dealt with military medicine (another soapbox I like to get on when people think Obamacare is a good idea...TRICARE is essentially the same thing and it SUCKS!).

I am now very curious how many PWN experience this, percentage-wise and vs. the general public. I hope they do larger-scale studies.

You have no idea (ok, maybe you do) how long I have just thought I'm crazy. I never realized this could be a symptom of a bigger problem.

[greatbig47]

You have no idea (ok, maybe you do) how long I have just thought I'm crazy. I never realized this could be a symptom of a bigger problem.

Oh some of us know VERY well. I was placed in a "Respite" (institute) before being properly diagnosed. My heart goes out to my N brothers and sisters who NEVER get diagnosed. You KNOW it happens.

Excellent thread my friends!

-Stu

[Bafflegab]

... if you've ever dealt with military medicine (another soapbox I like to get on when people think Obamacare is a good idea...TRICARE is essentially the same thing and it SUCKS!).

Oh, Stacy! I was medically retired in 1997 and have been using TRICARE (and the VA, but not as much) since. Sometimes exclusively. And I couldn't disagree with you more. The only thing that sucks about TRICARE is the low fees they pay physicians who care for the beneficiaries. If the fees paid were higher, many many more physicians would accept TRICARE patients. As it is, TRICARE scores better than most insurance companies. Their pharmacy benefits are hard to beat (I haven't run across any plan yet that has a better plan--TRICARE has a better formulary, some of the lowest co-pays, and they don't refuse physician requests as frequently as other insurance companies), TRICARE is also good about remittances, and TRICARE's benefits for women who are pregnant can't be beaten (benefits include mid-wives, high-risk, and all pre-birth and hospital costs).

There is a lot that TRICARE can do better, but when compared against private insurance companies, there's very little argument about who cares more about their beneficiaries. Private insurance companies have increased the cost of their premiums by 87 percent while their profits have increased 437 percent over the past ten years. The premiums TRICARE charges have stayed virtually the same during the same period.

I can go on, but will save it for another time .

[psocoptera]

I have talked to a lot of European doctors in the last year, and I have a much more positive view on single payer options. I understand that they are not the best for diagnosing rare conditions, but it took me 13 years with our system with multiple wrong diagnoses along the way to even get the "probably N" that I have now. You have to be a self advocate no matter what system, which is hard when you are really, really tired. Also hard when all the doctors you see think that you are depressed or anxious after an in-depth 5 minute evaluation (note sarcasm please).

[Stacy D]

I realize that single-payer systems can have many benefits. My bitterness comes from personal experience and I apologize if I offend anyone.

I've been extremely up and down and my brain-to-mouth (hands?) filter has not been working so well. While this is a sorry excuse, I do apologize for any offense in any of my posts.

[eww]

As a Canadian I think American healthcare is completely insane. But anyways, speaking of insane...

Yes, I too thought I was crazy. Still do sometimes. It's one of the reasons I read so much about N. That and as a student I have access to many journals that I wouldn't otherwise and feel it is more than grand to scrounge all the info I can get and let it simmer in my brain. And honestly, the more I read, the less crazy (but more abnormal) I feel.

Some things that I thought were perfectly normal I'm discovering are far from it. Below I'm attaching several articles (people seemed to enjoy the last ones) and the one I've found perhaps the most interesting compares schizophrenia to narcolepsy. READ IT! All of the things about hallucinations (specifically hypnogogic) are things I either thought was normal or crazy. The article led to a good discussion with my boyfriend who confirmed that no, he does not see the things I do before I go to sleep.

In particular he laughed hysterically about my sleepytime pong playing behind my eyelids. Anyone else hallucinate pong? LOL

Attached Files

•  Anomalous Hypothalamic Responses to Humor in Cataplexy (2008).pdf   210.18K   2 downloads
•  psychotic symptoms in Narcolepsy- phenomenology and a comparison with Schizophrenia(2009).pdf   235.35K   13 downloads
•  REVIEW Alternating vigilance states- new insights regarding neuronal networks and mechanisms (2009).pdf   425.19K   5 downloads
•  Cataplexy in anxious patients- is subclinical narcolepsy underrecognized in anxiety disorders? (2009).pdf   201.31K   4 downloads
•  Sleep and time course of consolidation of visual discrimination skills in patients with narcolepsy-cataplexy (2009).pdf   386.44K   3 downloads

[psocoptera]

Thank you for posting those! I'm going to read them as soon as I can stay awake...

[Saraiah]

Pscoptera and all,

YEAHH!!! I am practically jumping up and down to agree with you about being misdiagnosed for YEARS, and constantly being told that I am "just depressed." Bear in mind that I do have episodes of clinical depression, but please, I KNOW when I am depressed and when I am not! Just days before my MSLT diagnosing N, I wound up in an ER after running a red stop light and then a red stop sign in two days. By the grace of God, I didn't hit anyone, and no one got hurt. But I was flipping frightened to death, because I didn't know anything at that point about being in REM sleep at the same time as being awake, or about diminished alertness, or automatic behavior.... And so I'm in the ER and I even TELL the doc about my being tested for narcolepsy in 5 days, and the fact that my thyroid gland was very enlarged and that I was being tested for Hashimoto's Disease (which I do have) and thyroid cancer (which thankfully I didn't have). I tell him that I've been sleeping for 16-36 hours at a time, that I'm always exhausted, etc. And I'm frightened, and I'm asking the doc why could it be that I find myself unable to see a red stop sign that I've seen many, many times, and why do I find myself suddenly moving from a full stop through an intersection while the light is still red?

And the doc says..."You need to understand that people with depression have an exaggerated sense of their own illness. There is nothing wrong with you, but you do need to have a serious talk with your doctor about how your depression causes you to report symptoms that you are not having." At that particular moment, I was so desperately exhausted, I wanted so badly to be released so that I could go home and sleep, that I just let it go. I didn't have the energy to say that 1) I was not and am not clinically depressed, and 2) even at times that I have been depressed in the past, I have not been a person who exaggerates physical symptoms. Instead, I just looked at him and asked him if he'd sign that papers so that I could get out of there.

Ever since then, though, I've been thinking seriously about writing his SUPERVISOR a letter, with a copy to the treating doc, to say that when an authority figure minimizes and denies the symptoms of a person with narcolepsy, he only exacerbates and continues a problem of misdiagnosis and therefore suffering of the person who has a very serious and LIFE THREATENING disease - that is, had I not been with it enough to curtail my driving!!! Where in God's name does this doc get off - even after I tell him that I am getting tested for narcolepsy and report a number of symptoms of narcolepsy, he tells me that there is NOTHING WRONG with me???? I am STILL furious about it. Every time that I think about it, I get furious. Flipping flying dismissing me! Patronizing SOB. You know what I ought to do? I ought to demand to be allowed to come into a meeting with all of the ER docs, so that I COULD PROVIDE THEM WITH A LITTLE EDUCATION so that the next suffering person with narcolepsy that comes into their ER, scared to death and exhausted beyond measure, gets an actual explanation of how their symptoms MIGHT indicate narcolepsy, RATHER THAN AN IMAGINARY DEPRESSION THAT CAUSES THEM TO FALSELY COMPLAIN.

Oooooooh, it makes me so mad.

Saraiah

[psocoptera]

I remember when I was told that my cataplectic episodes were just my legs falling asleep. I tried to explain how different it felt, but primary care doctors are remarkably uneducated in neurological symptoms of any kind. A different doctor did seem reasonably concerned when I told him that my tongue stopped working mid-sentence. He tried to order a CT scan, but I think my insurance denied it. Which is ok in the end, because it wouldn't have shown them anything useful. I have a lot of daydreams about finding all the past doctors who implied that my symptoms were depression or psychosomatic and talking to them about the importance of screening for narcolepsy. Is there any kind of brochure or even a paper on the profile of a typical narcoleptic patient? There are a lot of those for patients, but I haven't seen any for doctors. I know my sleep doctor thought that the combination of my age of onset, current age, and my history of multiple doctors and multiple tests with no answers was almost as diagnostically relevant as the mild cataplexy. Is there any program to let primary care doctors and medical students know about us? I would volunteer to help with it.

[Saraiah]

Pscoptera, I don't know whether such a program or flier to educate physicians exists, but I would definitely also be willing to work on such a project - anything from helping to develop the content of a flier, all the way to meeting with physicians to educate them about N symptoms, and the many different ways that people with N may present to them. I was misdiagnosed and/or dismissed many, many times for 19 years, until finally the sleep specialist treating my sleep apnea tested me for narcolepsy.


At the time that I was diagnosed, my internist (whom I really like, otherwise) was still trying to treat my exhaustion with her newest theory, which was that I needed repeated B12 injections even though the first B12 injection did not help in the least, and my recent B12 blood level had only been slightly low. You'd think that after knowing me for 10 years and seeing my exhaustion level go from severe to beyond unmanageable, she'd start doing a little research on possible causes of excessive daily sleepiness (which I think should be called Unremitting Soul-killing Exhaustion [USE]). (I need to come up with a better adjective than "soul-killing," though, since I can't go around saying that to people.)

[eww]

I'm in the middle of a mini-project of trying to actually write down a kind of list of all the different "states of consciousness" that I experience in a descriptive, personal way. What I mean by that is for me "sleeping" is experiencend in very different ways. Sometimes I still feel awake but not moving because I'm sluggish or moving through molasses, not really asleep. Sometimes time just disappears randomly. Sometimes I feel actually paralysed. Etc.

I'm attempting to switch sleep docs in November so I want to have a concrete list of things that I experience which others can then compare to "normal" in order to help get symptoms out there. Also I've found I have very little awareness of what normal is. Many things that I thought were normal apparently are far far from it.

If it goes over well will the new sleep doc I was hoping to bring it to my University's Centre for Students with Disabilities and my GP as helpful possibly educational information. I know the CSD is always interested in things like that and my GP is a friend of the family so I'm sure I'll get a positive reaction with them.

Does that sound similar to what you guys were thinking?

Now you guys have got me thinking even more. Maybe when I'm done with it (maybe next week??) I could post it on NN and see what others thought or if anyone wanted to add to it. Make a collaborative general thing?

Thoughts?

[eww]

Oh and my boyfriend said he could help by describing what these look like from an outsider's perspective. He thought it would be good to get both perspectives out there. Not to mention make it easier for nonN's to "see"