Is this sleep paralysis? - Neurology

by Leah Neal, Feb 06, 2000 12:00AM

I just HAD to respond to Lynette, whose husband experiences some sort of sleep paralysis.

I don't blame the CCF Neuro MD for recommending that her husband be tested for sleep disorders.
And I sure it won't hurt.  Since 1962, I have been to countless neurologists and been tested in
countless sleep labs, through the years.  - for the same experience Lynettes husband has.

But I have experienced the exact same episodes since I was a child. They were [and still are] very,
very scary.   Mine happen in that peroid of 'just drifting off' when ones brain waves go from Beta
to Alpha.   I also have the same episodes as her husband, IE during the night.

I am paralyzed all over, cannot speak, cannot gesture, and so far I've never, ever been able to make
a sound so that anyone will ever hear me.

I just looked on the computer couple of weeks ago.  Since I was just diagnosed with a thryoid tumor,
solid 'cold' tumor and just had a biopsy, I am preparing to have a thyroid-ectomy next week. In
the course of surfing the net and reading about thryoid stuff in general, my  jaw dropped open
when I saw a paper entitled "Sleep Periodic Paralysis".  It is a condition just like Lynettes husband
and mine.  It has been primarily reported by Asian men.  [Go figure]

I am a Caucasian female, aged 54. The only other paper on the topic was a Black man in his late '40's
brought into an Emergency Room in Florida in 1997.

Come to find out, the cause is a sudden drop in blood Potassium.  To further complicate things, the
patients who have these, will always show normal potassium levels in our blood all during the day.
The research does not say what can be done about it.  It implies that it is NOT a sleep problem, but
more of a Blood Gas problem, and/or inability to regulate ones blood pressure and other blood
distribution while in a supine position (lying down).

Us patients who get it have potassium levels which are fine all day long.  Then right after we fall asleep,
lying down, BAM....potassium level drops to an alarming degree.  The articles did not give the cause, nor
a preventative.   But it is MORE related to thyroid and endocrine malfunction than it is to sleep disorders.
Or at least the article kept talking about the thyroid and never once said anything about sleep lab tests as necessary.

For myself I would assume [probably incorrectly] that more potassium would be the answer, especially
before bedtime -- but not only is that dangerous for me to assume that, it might be fatal. I know there is
a very delicate balance between the electrolytes, and potassium/magnesium balance which is crucial
to keep ones heart beating.  I don't want to mess around with that.  But I don't trust doctors anymore than
I trust myself -- after all, I've been describing this for the last 54 years, and not one of hundreds of
physicians has ever had a clue.  They either shrugged their shoulders or sent me to a neurologist to
be treated for atypical, unknown 'seizures' - or sent me to a sleep lab.   In other words, I HAD TO DO THE
RESEARCH and look it uup myself.  I will never give any physician credit for my finding out what the
sleep paralysis was caused by.  In all fairness, since I am a clinician, I know it's impossible for any
clinician to sit and do hours of research for every client/patient.  That would take lifetimes.

But, each time I take a potassium supplement [they are often found in diuretics, anyway] I have
found that the Potassium makes my "mind race" and causes me to have insomnia.  I hope this all makes
sense.  But instead of going back to a sleep clinic [where they said I have severe sleep apnea] I'm NOT
going to stop there.  I will go to an endocrinologist, or someone who knows about blood gas,etc. At least
i know it's thyroid/potassium related and can start from that point.

I am scheduled for surgery for cancer on my thyroid next week.  One of the other research articles
warns physicians to be SURE and check all patients blood Potassium level just 5 minutes before surgery;
while patient on the gurney in supine position. That research artlcle was fairly new, just published in
the last year.  I shudder to think of patients like me or Lynettes husband who perhaps have had other health problems or surgery which 'didn't go right' but nobody  knew what happened.  I am going to FORCE my surgeon to read the research  article -- or I'd rather not have the surgery.  When I had a C-section in 1967 for birth of second son, I woke up during surgery, was not fully anesthesized, but could not speak.

It maysound like a  tiny detail to others,  but for me [especially preparing for surgery] this is life or death detail. My surgeon AND my anesthesiologist  will ALL be expected by me to know about, BEFORE I consent to surgery. Thank you for reading such a long post. But its worth it.  Leah Neal, ***@****

by Leah Neal, Feb 06, 2000 12:00AM

About Lynette's husband and 'sleep paralysis'.

I just submitted a post about the info I found about my sleep paralysis, which is actually caused
by a drop in potassium level [which is fine all day, but not after lying down at night].

I also mentioned that I found it while researching "Thyroid" since I've been diagnosed with
thyroid cancer.  I am posting again, in hopes that Lynette and/or her husband will read this.

I also surfed on over to a web site at :   http://www.downwinders.com

It's about the effects of radiation on the thyroids of baby-boomer aged kids back in the
1950'.s  Lynette husband and I are about the same age.  Come to find out, many of us are
having thryoid problems [Tipper Gore just had a thryoid biopsy, her's was benign]. But
still, there is proof that there are is a vast, inordinate amount of people who were kids
under the age of ten years, between 1950 and 1956.  A person did not have to live anywhere
near Nevada to be exposed to any of the radiation.  As a matter of fact, the winds carried more
stuff to New Jersery.  Now there are more people on the East Coast with thryoid problems
in the early or mid'50's - than persons who lived several miles from the nuclear testing site
itself in Nevada.  It depended on which way the wind was blowing and which day/year the nuke
test was conducted.

Since I read about Potassium and related thryoid cancers/whether benign or not, I couldn't help
but mention it.  I'd hate for people who are paralyzed in their sleep to be told like me, it's
just 'sleep apnea', etc.  That's great to know...but there is more to the Paralysis.  Please read
up on Thyroid, potassium, etc.  - and look up the sites on radiation, then correlate all the info
with Lynettes husband's age.  Lynette if you are reading this, please think about your husband
getting MORE than just a little T3/T4 thyroid test done.  [Mine was a normal thryoid function
test, but I have thryoid cancer].  Please consider getting an Sonogram of his neck, of his thryoid.
Don't stop with just a thryoid function test.

Good luck.  I hope you come back to this site soon.  I wish you and your husband well. Let me know
how it all comes out, okay?  Kindest regards, Leah |  ***@****

by CCF Neuro[P] MD, RPS, Feb 06, 2000 12:00AM

thanks for the comments.

CCF Neuro MD

by Maya, Feb 07, 2000 12:00AM

I am a 20 year old female and have been experiecning sleep paralysis since I was 15. I realized this when I described what I thought was a reccuring nightmare to a friend when she told me that it sounded very much like this condition and that I should do some research. I did some research and needless to say, what I thought was a recurring nightmare is most definitely sleep paralysis. What I found even more unsettling was the connection that Leah Neil mentioned between thyroid problems and this disorder- I have had an enlarged thyroid since I was a child but doctors said that it posed no health risks.

Although it is reassuring that there is a name for this condition I would very much appreciate any light that could be shed on the subject. I'm sure that all sufferers of sleep paralysis understand what a terrifying experience this is.

Thank you.

Maya

by Leah on Sleep Paralysis, Feb 09, 2000 12:00AM

The only thing I keep asking of my doctors is for them to please stop calling
it "Sleep Paralysis".  Because the more I (or they) keep perpetuating that label,
the next doctor will also assume it's a 'sleep disorder'.  Come to find out it's not
really.

I finally (since my last post) found the paper I got off the internet on the subject
of the Period Paralysis.  I found it under:

    "Thyrotoxic Periodic Paralysis"
The specific URL I found the info under was:

http://www.healthanswers.com/centers/body/overview.asp?id=urinary+system&filename=000319.htm

Actually, I think the search words I used were under "Hypokalemic paralysis"

It is defined as ...A disorder characterized by intermittent episodes of muscle weakness that occurs in people with thyrotoxicosis, a disorder associated with high levels of thyroid hormones.
Causes, incidence, and risk factors:
Hypokalemic periodic paralysis (familial eriodic paralysis) is an inherited condition, and in most cases, it is directly inherited. In other cases, the disorder appears sporadically in a family group. It can occur in people with THYROTOXICOSIS (high thyroid hormone levels) especially when the condition has persisted for several months/years.  About 10% of people with HYPERTHYROIDISM will exhibit thyrotoxic periodic paralysis.  The disorder is most common in men, particularly Latin American and Asian men.
     The disorder involves attacks of muscle weakness OR paralysis alternating with periods of normal muscle function.  Attacks usually begin after syyptoms of hyperthyroidism have developed.  The frequency of attacks varies from daily to yearly,.  Episodes of muscle weakness may last for a few hours or may persis for seceral days.
       During an attack, there is a low level of potassium in the bloodstream (serum). Serum potassium leels are normal between attaks.  There is no decrease in total body potassium, however.  Potasssium flows from the bloodstream into muscle cells.  Insulin leels may affect the disorder in some people because insulin increases the flow of potassium into cells.
     Weakness most commonly affects the muscles of the arms and legs. It may occasionally affect the muscles of the eyes or the muscles involved in breathing and swallowing (which can be fatal).  Heart
arrhythmias may occur during attaks because of the drop in potassium levels.  Although muscle strength is initially normal between atacks, repeated attacks may eventually cause progressive and persistent muscle weakness.
Signs and Tests:
The health care provider may suggest genetic counseling. Treatment of the underlying thyroid disorder prevents attacks of weakness.
    The health care provider may suspect thyrotoxic periodic paralysis based on a family history of the disorder, the episodic nature of symptoms, low potassium levels during attacks, obnormal throid hormone levels, and elimination of other disorders associated with low potassium as the cause of symptoms.
   Between attacks, examinamtion is normal, or thre may be signs of hyperthyroidism, such as a palpably enlarged thyroid.  During an attack, reflexes may be decreased or absent. Weakness is constant rather than spastic (spasmodic) and is greater in proximal muscle groups (near the body, such as the shoudlers or hips) than in distal groups ( away from the body such as the arms or legs) The health care provider may attemtpt to trigger an attck by administereing insulin and glucose (which reduces potassium levels) or
thyroid hormone.

For the rest of it go to the address above.  I just paraphrased what the paper said, so I don't think I
violated any copyright laws, I did not write exactly.  It also goes on to say some things that further
interested me about chronic attacks eventually resulting in progressive muscle weakness, which is present even between attacks.  Now THAT made me take extra notice, since I have been diagnosed
with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) which is much MORE than just being
'tired', believe me.  It's not being fatigued, it's being totally disabled by devastating weakness; where
it takes 6-8 hours just to crawl to the shower, get out, dry off, and crawl back in bed.
   It went on to explain the breathing and heart arrhythmias dangers involved.  It explains that its difficult to diagnose because lab reports often show 'within normal limits' (thyroid test for T3 and T4).  But I
don't know what other test BESIDES the usual T3 and T4 for thyroid one would get.

   Perhaps the doc on this site can advise another more in-depth test for thyroid problems.  I have had
tons of never-ending thyroid problems all my life.  Now this thryoid 'cancer' which is 'not really
cancer'.  Geeez.  Actually, they are going to cut open my throat and take out my thryoid because they
"can't say its NOT cancer".  What my surgeon does not realize is that I've had thyroid problems ALL
my life since a baby, thats 53 years now.  But doctors still believe those measly, crummy T3 and T4
tests.  Why?  WHen so many of us have stuff wrong with our Thryoids which are NOT reflected on
that rinky-dink test?

    I am still NOT going to have a thyroidectomy until I make an appointment with either an
endocrinologist (adrenals, thyroid, pitutary- all interrelate)....to see what s/he says.  I hope s/he
can give me a more in-depth thyroid test.  I deserve it after 54 years of all the Periodic Sleep Paralysis,
and the last 10 years of profound weakness which has left me with no social life.

   If nothing else, I would assume I ned to see a specialist about what causes Potassium imbalances,
OTHER than thyroid malfunction.  On the web page they said that a diet low in carbohydrates and low in salt may be recommended; but that treatment of the underlying thyroid disorder usually stops attacks.  But I don't think any "underlying thyroid disorder' can be treated properly unless it is FIRST DIAGNOSED
properly.   So far, I've had 54 years of saying, yeah there is something wrong with you thryoid, but
we don't know...and by the way your thyroid test is normal; but, also, by the way, we want you to have
surgery to have it remove".
Huh?
   I am NOT comfortable with that -- so I  am not going to stop asking questions!  Thanks for reading
such a long post!    Leah Neal/ ***@****

by Jennifer Reynolds, Feb 13, 2000 12:00AM

Hi, I am a twenty-four year old Female from southern California. I have had sleep problems all of my life. My mother told me when I was a infant I would fall asleep quickly then wake up 1 hour after falling asleep screaming in terrior. Lately I have been experiancing sleep peralysis and apart from that, I have been waking up in the middle of the night with a dilusional feeling. (seeing the carpet and the curtains move) I have not had this all of my life just in the last few months. I have been diagnosed with hypoglacimia, mitro vaulve prolapse, and fibromyalgia. I have been tested for thyriod levels several times and alway comes back normal. This paralysis espisods are very frieghtning and have been emotionally desturbing and it seems as doctors just brush it off as nothing. There needs to be more awareness and information about this horrible condition, more sympothy from the medical community, and possibly studies and research. ***@****

by Leah Neal-Update!, Feb 16, 2000 12:00AM

Hello All,
Well, I've done a lot of research since I last posted. Not only on the computer online-
but in person with a NeuroSurgeon at one of the best medical schools in the country-
also with several other Neuromuscular medicos.

Come to find out, this thing about Periodic Partial Paralysis is FAR more RARE than
I ever realize. Well, I thought  I was the only one. Then online here, I read two more
people.  But at first, I assumed it was from my  thyroid, since I just got a recent diagnosis
re: my thyroid.

If anyone has Periodic Partial Parlysis, whether nocturnal or otherwise, PLEASE got to
an article at URL:
http://www.calexplorer.com/list/hyper.htm
also go to: the same addresonly at the end of URL, instead of 'hyper.htm' put hypo.htm

Come to find out it's part of the Muscular Dystrophies. You can find out more on the MDA
site at:
http://www.mdausa.org/publications/Quest/q53periodic.html
or just start with the MDA Home Page
The  thing involved with Periodic Partial Paralysis or PPP involves either too much
potassium or not enough.  If one has too much, its called HyperK-PP; if one doesn't have
enough it's called HypoK-PP.  Either, way it can be controlled ...see the Muscular Dystrophy
Webpage under Period Paralyses.

I am just now finding out that I have some muscle damage due to years and years (decades)
of having the Paralysis at night.  For years - I kept asking every doctor, every Neurologist
in town (and I live in a large, progressive city) but nobody, NOT ONE doctor had a clue as to
what I was talking about back in the 1950''s or 1960's, etc. or since.

Now that I'm in 5th, almost 6th decade, it looks like I have permanent or semi-permanent muscle
weakness from going so many decades untreated.  I hope the others who have written in about the
night Periodic Partial Paralysis all the luck in the world.  It will take a VERY aggressive attitude
to get most doctors to listen to you....but it will be worth it so you won't end up with your life
practically over (well, the quality of my life, mobility-wise, is shot) by the time you're in your
40s and over like me.
I'd hate to see that happen.  Please read the websites I cited above.  Then get to a doctor listed on one
of the sites - even if you have to e-mail or make a long distance phone call.  Even if a person does
not have the money for plane fare to another city far away - you can call the United Way. They have
a partner-program with Delta Airlines.  For people who have problems (don't necessarily have to
be life/death matter immediate) but serious problems and health issues like this - just explain
this to Christine, the lady with the program with United Way (she works only on M-W-Fri).

It will be worth seeing a QUALIFIED specialist - even if s/he is many states away, and a two day airplane
flight away.  At least one can get the Potassium+ or Potassium- problem evaluated.  The other
patients in the articles, stated they had to learn to be 'aggressive' towards restaurant people, also -
since a change in nutrition/diet is required.

But please seek *qualified* help. If your local physicians act like mine, like they never heard of such
a thing - run from their office as fast as you can and get to a doctor who DOES know - even out of state.
I wish I had a doctor who knew about it.    I would not have the muscle deterioration I do know.

Also, the other electrolytes in ones body is involved. All of them, the Sodium, Calcium, Potassium &
Cloride, "Ion Channels" are out of balance with Periodic Partial Paralysis - well, at least the Potassium
is.  But this usually involves how much sodium and water you use/drink.  Depending on if your are
HyperKPP or HypoKPP, you just have to see which one..you may have to avoid carbohydrates. Or just
the opposite depending on which one you have.  The sodium balance gets to be very tricky and could be
serious.  All these 'electrolytes' are what keeps our heart beating.

When ones electrolytes are out of balance, it can cause heart arythmias, which I have now.  Because I
let my PPParalysis go for decades, I have cardiac involvedment.  Also - I will be getting some further
testing about my kidneys.   Come to find out, one way the body rids too much potassium is from  increased
urine output, so people with HyperKPP need to drink lots of water.
But at my age, it looks like I may have some Renal Tube involvement.  More reason to get medical help
for this now, while you are young.   I know I've had some thyroid problems off and on.  But even worse,
I've had so many kidney infections in my lifetime, I can't count that high.

Now thats what more of a reason to test my Kidneys. To see if they and Adrenals are okay.  Actually, it's
all inter-related.  Its only because I'm older and let the PPP go [since no doctor ever heard of it] that
I'm now paying for it - BIG TIME.  With all the toxins and/or too much of this, not enought of that in
my blood - it has affected my muscles all these years.

Gee, I was told 10 years ago I had Chronic Fatigue Syndrome and/or Fibromyalgia.  Looks look now, all along it was a Muscluar Dystrophy Association thing, HyperKPP...but has now caused muscle damage.
I'm so weak I have not driven a car in over 6 months.

Good luck to everybody out there who has experienced Periodic Partial Paralysis. Please don't settle for people/doctors, whoever, trying to convince you have a Sleep Disorder.  If they are not experts in the
field of "Channelopathy" then they don't have a clue.  You could end up with muscle damage after years,
like me.  Please keep on asserting yourself, and making yourself heard.  Keep searching online until
you read the articles from the MDA association [above].  There are easy ways to treat it for those of
you who have not had these for 6 decades.
For people still young (well under 45) you'll probably just need to change your diet some, take
the Rx, they have for it...and it won't be very complicated after all.  Just do it today.  Don't put it
off. Don't delay.
Thanks, Leah Neal--***@****

by W.D. Haskins, Feb 21, 2000 12:00AM

I have had similar experiences with sleep paralysis as Lynette's husband. I am a 69 yr old white male. I had my first episode during my late 20's. The first ones only came when I was watching Sunday football games while in a recliner, and only when I was getting chilled. After falling asleep, I could hear the football game, my wife and children talking and also a intermittent whiring which came and went-starting atlow intensity and increasing to the point of blocking out all other sounds. When I finally broke free with great difficulty, my body was very cold. Later I started having these at night while sleeping on my back and when I became chilled. At this times I started having what seemed like hallucinations where I felt my body was rapidly moving about on the floor from one wall to another and on some occasions levitating and moving the same way. I would try to make a sound to signal help and on occasion would awaken my wife. At the moment she touched me, I would come back to consciouness but was always very cold, a sensation confirmed by my wife. This condition would only come about with great infrequency- sometimes years apart and at other times clustered wath 3 or 4 in a month. As I've gotten older,the intensity of these experiences has diminished along with their frequency. Though still alarming while in progress, I have an awareness of what is occuring, that it will soon pass without harm. Still on occasion when I am able to make a sound, my wife's touch produces an immediate release. My thyroid is normal and when I''ve had potassium tests done, they fell within a normal range.

by CCF Neuro[P] MD, RPS, Feb 24, 2000 12:00AM

thanks for your comments.

CCF Neuro MD

by Walter Haskins, May 29, 2000 12:00AM

The first sleep paralysis experience that I had was when I was in my 30's in the 1960s. I was reclining in a recliner chair watching a football game. I fell asleep. Later I awakened, I could hear the TV and my children playing around me. I couldn't move or speak. I had the sensation of a whirring sound that came and went. I also had the sensation of coldness. I have experienced this on occasion for the next 40 years. On occasion I have been able to make a moaning sound and awaken my wife. Just as soon as she touches me, the episode ends. This kind of episode only occurs when I sleep on my back and when I become chilled.In the last 15 years, these episodes have diminished both in their frequency and intensity. Of late they seem to occur within the context of a dream. Now I am less certain of being awake. I am though aware of what is occuring (the whirring sound and coldness), and sometimes am able to moan enough to be awakened by my wife. When I do awake, I get up and walk around to escape the sensation. When I do this, I get the strange audible impression of thingking I hear someone move a broom over a concrete sidewalk every time I take a step. In about 10 minutes, I am able to return to bed and sleep normally.

by sandro parodi, Jun 21, 2000 12:00AM

here i had also very intense experience of that stuff. Everyone at home relatives or not have it. Not daily but happends! They are usually together with a sound like an acustic audio problem, but increasing its loud.

Many people say that had seen or hear things there but its not my case, its son horrible that I dont have mind to listen or hear nothing else!

by tc, Jul 06, 2000 12:00AM

It also may be narcolepsy. A condition where you brain is in one stage a sleep and skips to another. Sleep test figured that one out.

by Judy, Jul 16, 2000 12:00AM

I have facial numbness. One blood test indicated that my potassium level was high. Retest ok. It was assumed that the test was incorrect.

Could there be a connection? Any thoughts?

by tiffany, Jul 16, 2000 12:00AM

I am 29 years old and have suffered from terrifying experiences while sleeping since I was a teenager.They come and have gone through the years but recently have gotten worse.Last night was the worst.I fall asleep and then become paralized,I start to hallucinate experience a fear like I have never known.I try to awake myself and try to scream but only my eyes move and I have to wait until I awake which doesnt seem long but with the fear I feel it seems like forever.When I was younger I would scream for Jesus and I could awake so I assumed it was some type of demonic attack,(sorry sounds strange)Now older that doesnt work and last night I had about 6 experiences in a row.It terrified me,I decided to see if this was a sleep problem and to my surprise I am not alone.I am so scared because these attacks I call them terrify me and happen more so If I think about having the fear of one right before I fall asleep.I need help understanding this and what causes it.Today I felt mentally drained and feel it has to do with the intense fear I had last night during my attacks.Please help!

by Kim K., Aug 17, 2000 12:00AM

I started experiencing sleep paralysis at age 21 when I moved away to college. Interestingly, at this time I also started taking birth control. I am now 24 and experience sleep paralysis approx. every two months or so. I experience a feeling that I am dying and about to "cross over" or that someone is in my apartment and is about to attack me, but I can't do anything. I have never been able to make a sound during these episodes. I have learned to get myself out of it before reaching the point of no return. Very very scary!!! Anyway Leah Neal's info on blood/potassium levels and difficulty regulating blood pressure makes me wonder if there is a correlation here. I have also suspected for a long time that I might have blood sugar problems(I have many symptoms of reactive hypoglycemia-never tested), but have never correlated this issue with sp. SP experiencer Jennifer Reynolds says she has hypoglycemia so that too makes me wonder! Basically I wanted to offer this info about my situation because it seems there is much more to sleep paralysis than stress. I have also experienced a very strange prickily feeling throught the fatty areas of my thighs, calves, and hips. I am not overweight, and this occurs often when I sit down after walking for a while. So, this makes me think of a correlation between muscular problems/degeneration and sleep paralysis. Anyway, I have never been diagnosed with anything, no thyroid problems that I know of but thought perhaps this info might help. So...birth control, sugar sensitivity, prickily leg symptoms and sleep paralysis...hmmm. Oh and I should share that my sleep paralysis experiences occur only when napping and do seem to be more frequent when my life is crazy with stress and I'm not sleeping right. It's good to know there are others!!!!

by jan, Aug 18, 2000 12:00AM

I am glad I stumbled on to these posts. My neuro. is sending me for a 3rd sleep study for suspected narcolepsy (the other 2 I didn't sleep enough) . He asked me if I had sleep paralysis, I told him I didn't, but after reading these experiences I realize I do. Mine only happen after naps, also. Others in my family have talked about this experience, too, so I thought it was normal. Another thing, I had moments where I felt I lost conciousness. I would realize my head was tilted fully back and slowly pick it up and opened my eyes. I, also had a time(s) where my legs just buckled. My neuro suggested periodic paralysis and gave me a lab slip to carry so when I have another episode I will get a potassium level check STAT, (actually a basic metabolic panel,but he is interested in the potassium).

by Ronnie, Aug 18, 2000 12:00AM

I've had these experiences since I was eleven.  I learned to live with it but it is still terrifying and frustrating every time.  I know my mother had them and still goes through it every now and then.  My boy has them infrequently and he's had them since around the same age as I had mine.

I am an Asian male.  Filipino, in fact, and that puts me right smack dab in the middle of the profile. I am now 40 years old and I am concerned about all the adverse effects this might be doing to my body.  I've had some very severe phases of weakness for years.  They will last for half a year or so. It was getting so that I was considering that I will be dead soon but before that my life will be progressively less active until I can only stay awake in bed and not move.  That phase ended and I've regained a lot of my energies but not to levels that are considered robust or healthy.  I had no inkling that the paralysis has anything to do with the tiredness.

I just saw a Nightline episode (I think it was Nightline) that featured Sleep Paralysis and the end conclusion was that it was a strange condition but HARMLESS.  This will further hinder the medical profession to take this seriously.

Now, is there a clinic or a doctor that has done extensive work on this condition?  If anyone has any info please post it here.  It will be good to hear something else than incredulity from doctors and that look that says, "Basket Case."

by R Nelson- "I can't believe we are Not Al, Sep 05, 2000 12:00AM

Hi,

I am a 28 year-old black female, and have been experiencing 'sleep paralysis" since I was 14 or 15 years old (I can't remember which).  I come from a very large family, my mother had 15 children.  Out of the 15, 10 of us are experiencing what we started calling, "sleep paralysis".   We did not grow up together.  Our mother lost custody of every one of us when I was five years old. I an her ninth child.   We began to get to know one another in our late teens, early twenties.  One thing we learned after beginning to associate with one another, we all have similar medical "problems", one of which is, this sleep paralysis thing.  We never mentioned it, and it came up when a sibling had the nerve to begin to describe her sleep problems.  Too our amazement, we found that it occurs in almost all of us.  I found great comfort in knowing that my "long lost brother and sisters" were experiencing this frightening terrifying experience, that I can never get used to. My mom passed away at the age of 50, but I got a chance to meet her in my early twenties, and revealed what I thought was a very dark secret (this sleep thing).  She said very casually "Oh girl, you got that from me, your Daddy you to shake me out of that all the time".  Here are the facts of my siblings:

1) 10 out of 15 of us experience this horrifying sleep paralysis thing. We are not narcopleptic (at least do not think we are as none of us have sleep attacks).

2) One of my siblings have a different dad, but she still experiences the sleep paralysis.

3) We can pull ourselves out of it (or for some of us, used to be able to) if we wiggle a toe, or a finger and spread the wiggle until we get our whole body tensed up, then make a big lurch for a sitting up positios.  For me, nothing works anymore, unfortunately, it gets exremely more powerful if I try to pull  myself out of it and fail (which is what happens 100% of the time now).  It almost always occurs if we are lying on our back.  Some of us have had it happen when in sitting position.  It happens upon awakening, and upon sleeping.

4) We are definatley not cataplexic, and not narcoleptic from our own observations.

5) The symptoms can be induced by stress, not enough sleep, or TOO MUCH sleep.

6)  Two of us have experienced it while simultaneously having a bad cold, in which case both nostrils were stopped up.  Unfortunately the brain didn't make the connection.  It's enough that we have breathing difficulty, in addition to that horrible weighty feeling on our chest, when having the attack.  One of the persons who had an attack with a stuffy nose was me (my greatest fear came true).  I suffocated the whole time (and so did my sister as she described. I suffocated to the point to I can say, I know what it must feel like for a person who is drowning, right to the point before they take a gasp of air and die.  My mouth flew open on its own after I'd completely, and I me sufficatingly completely, run out of oxygen.  It was a VERY, VERY horrible experience, and I no one ever experiences that in their life.  Anyways, I felt my forehead go cold, saw a flash of light before i gasped.  It brought me out of the paralysis at least.

7) In some of us, our hearts speed up to the point we feel we'll have a heart attack.  That's actually what 'wakes me'. I wake to find out I'm paralyzed.  I lay there and struggle with it, with thoughts of death.  It's very difficult to breathe during the attacks.

8) Almost all of us have heard "footsteps" when it happens, as if someone else is in the room.  Another thing, we call out to people if someone else is around, and it sounds like to us that we're screaming, but to them, it's just a faint sound.

9) Sometimes we can see and hear what's going on around us, but can't move a muscle.

10) In addition to all of the above, half of us have frequent kidney infections (i have lost count).  Some of us have gone to the doctor for that.  One of my brothers have lost one of his kidneys.

11) When we have it, normally its several times a night.  It is not every night though. However, one of my sisters, unfortunately has it at least 3 or 4 times a week (many times a night on those occasions).

12) Some of us have 'out of body experiences' when it happens. That's another whole issue that I want go into detail here.

I'll stop right there, as this reply is getting too long for me too type, and I'm sure you've read enough.  All I can say is:

THIS IS THE MOST HORRIBLE, FRIGHTENING CONDITION, MEDICALLY THAT I HAVE, IN MY OPINION,  AND MY SIBLINGS REPORT HAVING, AND WISH THERE WAS A CURE. WE HAVE RECENTLY STARTED SEARCHING THE INTERNET, TO FIND OUT, WE ARE NOT ALONE.

Thanks for reading this very long letter.

Wishing there was a Cure,

-R Nelson

by R Nelson- "I can't believe we are Not Al, Sep 05, 2000 12:00AM

Hi,

I am a 28 year-old black female, and have been experiencing 'sleep paralysis" since I was 14 or 15 years old (I can't remember which).  I come from a very large family, my mother had 15 children.  Out of the 15, 10 of us are experiencing what we started calling, "sleep paralysis".   We did not grow up together.  Our mother lost custody of every one of us when I was five years old. I an her ninth child.   We began to get to know one another in our late teens, early twenties.  One thing we learned after beginning to associate with one another, we all have similar medical "problems", one of which is, this sleep paralysis thing.  We never mentioned it, and it came up when a sibling had the nerve to begin to describe her sleep problems.  Too our amazement, we found that it occurs in almost all of us.  I found great comfort in knowing that my "long lost brother and sisters" were experiencing this frightening terrifying experience, that I can never get used to. My mom passed away at the age of 50, but I got a chance to meet her in my early twenties, and revealed what I thought was a very dark secret (this sleep thing).  She said very casually "Oh girl, you got that from me, your Daddy you to shake me out of that all the time".  Here are the facts of my siblings:

1) 10 out of 15 of us experience this horrifying sleep paralysis thing. We are not narcopleptic (at least do not think we are as none of us have sleep attacks).

2) One of my siblings have a different dad, but she still experiences the sleep paralysis.

3) We can pull ourselves out of it (or for some of us, used to be able to) if we wiggle a toe, or a finger and spread the wiggle until we get our whole body tensed up, then make a big lurch for a sitting up positios.  For me, nothing works anymore, unfortunately, it gets exremely more powerful if I try to pull  myself out of it and fail (which is what happens 100% of the time now).  It almost always occurs if we are lying on our back.  Some of us have had it happen when in sitting position.  It happens upon awakening, and upon sleeping.

4) We are definatley not cataplexic, and not narcoleptic from our own observations.

5) The symptoms can be induced by stress, not enough sleep, or TOO MUCH sleep.

6)  Two of us have experienced it while simultaneously having a bad cold, in which case both nostrils were stopped up.  Unfortunately the brain didn't make the connection.  It's enough that we have breathing difficulty, in addition to that horrible weighty feeling on our chest, when having the attack.  One of the persons who had an attack with a stuffy nose was me (my greatest fear came true).  I suffocated the whole time (and so did my sister as she described. I suffocated to the point to I can say, I know what it must feel like for a person who is drowning, right to the point before they take a gasp of air and die.  My mouth flew open on its own after I'd completely, and I me sufficatingly completely, run out of oxygen.  It was a VERY, VERY horrible experience, and I no one ever experiences that in their life.  Anyways, I felt my forehead go cold, saw a flash of light before i gasped.  It brought me out of the paralysis at least.

7) In some of us, our hearts speed up to the point we feel we'll have a heart attack.  That's actually what 'wakes me'. I wake to find out I'm paralyzed.  I lay there and struggle with it, with thoughts of death.  It's very difficult to breathe during the attacks.

8) Almost all of us have heard "footsteps" when it happens, as if someone else is in the room.  Another thing, we call out to people if someone else is around, and it sounds like to us that we're screaming, but to them, it's just a faint sound.

9) Sometimes we can see and hear what's going on around us, but can't move a muscle.

10) In addition to all of the above, half of us have frequent kidney infections (i have lost count).  Some of us have gone to the doctor for that.  One of my brothers have lost one of his kidneys.

11) When we have it, normally its several times a night.  It is not every night though. However, one of my sisters, unfortunately has it at least 3 or 4 times a week (many times a night on those occasions).

12) Some of us have 'out of body experiences' when it happens. That's another whole issue that I want go into detail here.

I'll stop right there, as this reply is getting too long for me too type, and I'm sure you've read enough.  All I can say is:

THIS IS THE MOST HORRIBLE, FRIGHTENING CONDITION, MEDICALLY THAT I HAVE, IN MY OPINION,  AND MY SIBLINGS REPORT HAVING, AND WISH THERE WAS A CURE. WE HAVE RECENTLY STARTED SEARCHING THE INTERNET, TO FIND OUT, WE ARE NOT ALONE.

Thanks for reading this very long letter.

Wishing there was a Cure,

-R Nelson

by R Nelson- "I can't believe we are Not Al, Sep 05, 2000 12:00AM

Hi,

I am a 28 year-old black female, and have been experiencing 'sleep paralysis" since I was 14 or 15 years old (I can't remember which).  I come from a very large family, my mother had 15 children.  Out of the 15, 10 of us are experiencing what we started calling, "sleep paralysis".   We did not grow up together.  Our mother lost custody of every one of us when I was five years old. I an her ninth child.   We began to get to know one another in our late teens, early twenties.  One thing we learned after beginning to associate with one another, we all have similar medical "problems", one of which is, this sleep paralysis thing.  We never mentioned it, and it came up when a sibling had the nerve to begin to describe her sleep problems.  Too our amazement, we found that it occurs in almost all of us.  I found great comfort in knowing that my "long lost brother and sisters" were experiencing this frightening terrifying experience, that I can never get used to. My mom passed away at the age of 50, but I got a chance to meet her in my early twenties, and revealed what I thought was a very dark secret (this sleep thing).  She said very casually "Oh girl, you got that from me, your Daddy you to shake me out of that all the time".  Here are the facts of my siblings:

1) 10 out of 15 of us experience this horrifying sleep paralysis thing. We are not narcopleptic (at least do not think we are as none of us have sleep attacks).

2) One of my siblings have a different dad, but she still experiences the sleep paralysis.

3) We can pull ourselves out of it (or for some of us, used to be able to) if we wiggle a toe, or a finger and spread the wiggle until we get our whole body tensed up, then make a big lurch for a sitting up positios.  For me, nothing works anymore, unfortunately, it gets exremely more powerful if I try to pull  myself out of it and fail (which is what happens 100% of the time now).  It almost always occurs if we are lying on our back.  Some of us have had it happen when in sitting position.  It happens upon awakening, and upon sleeping.

4) We are definatley not cataplexic, and not narcoleptic from our own observations.

5) The symptoms can be induced by stress, not enough sleep, or TOO MUCH sleep.

6)  Two of us have experienced it while simultaneously having a bad cold, in which case both nostrils were stopped up.  Unfortunately the brain didn't make the connection.  It's enough that we have breathing difficulty, in addition to that horrible weighty feeling on our chest, when having the attack.  One of the persons who had an attack with a stuffy nose was me (my greatest fear came true).  I suffocated the whole time (and so did my sister as she described. I suffocated to the point to I can say, I know what it must feel like for a person who is drowning, right to the point before they take a gasp of air and die.  My mouth flew open on its own after I'd completely, and I me sufficatingly completely, run out of oxygen.  It was a VERY, VERY horrible experience, and I no one ever experiences that in their life.  Anyways, I felt my forehead go cold, saw a flash of light before i gasped.  It brought me out of the paralysis at least.

7) In some of us, our hearts speed up to the point we feel we'll have a heart attack.  That's actually what 'wakes me'. I wake to find out I'm paralyzed.  I lay there and struggle with it, with thoughts of death.  It's very difficult to breathe during the attacks.

8) Almost all of us have heard "footsteps" when it happens, as if someone else is in the room.  Another thing, we call out to people if someone else is around, and it sounds like to us that we're screaming, but to them, it's just a faint sound.

9) Sometimes we can see and hear what's going on around us, but can't move a muscle.

10) In addition to all of the above, half of us have frequent kidney infections (i have lost count).  Some of us have gone to the doctor for that.  One of my brothers have lost one of his kidneys.

11) When we have it, normally its several times a night.  It is not every night though. However, one of my sisters, unfortunately has it at least 3 or 4 times a week (many times a night on those occasions).

12) Some of us have 'out of body experiences' when it happens. That's another whole issue that I want go into detail here.

I'll stop right there, as this reply is getting too long for me too type, and I'm sure you've read enough.  All I can say is:

THIS IS THE MOST HORRIBLE, FRIGHTENING CONDITION, MEDICALLY THAT I HAVE, IN MY OPINION,  AND MY SIBLINGS REPORT HAVING, AND WISH THERE WAS A CURE. WE HAVE RECENTLY STARTED SEARCHING THE INTERNET, TO FIND OUT, WE ARE NOT ALONE.

Thanks for reading this very long letter.

Wishing there was a Cure,

-R Nelson

P.s. I'm having trouble submitting this, i never received a confirmation, so please forgive me if this posts multiple times...

by R Nelson, Sep 05, 2000 12:00AM

Hi,

I am a 28 year-old black female, and have been experiencing 'sleep paralysis" since I was 14 or 15 years old (I can't remember which).  I come from a very large family, my mother had 15 children.  Out of the 15, 10 of us are experiencing what we started calling, "sleep paralysis".   We did not grow up together.  Our mother lost custody of every one of us when I was five years old. I an her ninth child.   We began to get to know one another in our late teens, early twenties.  One thing we learned after beginning to associate with one another, we all have similar medical "problems", one of which is, this sleep paralysis thing.  We never mentioned it, and it came up when a sibling had the nerve to begin to describe her sleep problems.  Too our amazement, we found that it occurs in almost all of us.  I found great comfort in knowing that my "long lost brother and sisters" were experiencing this frightening terrifying experience, that I can never get used to. My mom passed away at the age of 50, but I got a chance to meet her in my early twenties, and revealed what I thought was a very dark secret (this sleep thing).  She said very casually "Oh girl, you got that from me, your Daddy you to shake me out of that all the time".  Here are the facts of my siblings:

1) 10 out of 15 of us experience this horrifying sleep paralysis thing. We are not narcopleptic (at least do not think we are as none of us have sleep attacks).

2) One of my siblings have a different dad, but she still experiences the sleep paralysis.

3) We can pull ourselves out of it (or for some of us, used to be able to) if we wiggle a toe, or a finger and spread the wiggle until we get our whole body tensed up, then make a big lurch for a sitting up positios.  For me, nothing works anymore, unfortunately, it gets exremely more powerful if I try to pull  myself out of it and fail (which is what happens 100% of the time now).  It almost always occurs if we are lying on our back.  Some of us have had it happen when in sitting position.  It happens upon awakening, and upon sleeping.

4) We are definatley not cataplexic, and not narcoleptic from our own observations.

5) The symptoms can be induced by stress, not enough sleep, or TOO MUCH sleep.

6)  Two of us have experienced it while simultaneously having a bad cold, in which case both nostrils were stopped up.  Unfortunately the brain didn't make the connection.  It's enough that we have breathing difficulty, in addition to that horrible weighty feeling on our chest, when having the attack.  One of the persons who had an attack with a stuffy nose was me (my greatest fear came true).  I suffocated the whole time (and so did my sister as she described. I suffocated to the point to I can say, I know what it must feel like for a person who is drowning, right to the point before they take a gasp of air and die.  My mouth flew open on its own after I'd completely, and I me sufficatingly completely, run out of oxygen.  It was a VERY, VERY horrible experience, and I no one ever experiences that in their life.  Anyways, I felt my forehead go cold, saw a flash of light before i gasped.  It brought me out of the paralysis at least.

7) In some of us, our hearts speed up to the point we feel we'll have a heart attack.  That's actually what 'wakes me'. I wake to find out I'm paralyzed.  I lay there and struggle with it, with thoughts of death.  It's very difficult to breathe during the attacks.

8) Almost all of us have heard "footsteps" when it happens, as if someone else is in the room.  Another thing, we call out to people if someone else is around, and it sounds like to us that we're screaming, but to them, it's just a faint sound.

9) Sometimes we can see and hear what's going on around us, but can't move a muscle.

10) In addition to all of the above, half of us have frequent kidney infections (i have lost count).  Some of us have gone to the doctor for that.  One of my brothers have lost one of his kidneys.

11) When we have it, normally its several times a night.  It is not every night though. However, one of my sisters, unfortunately has it at least 3 or 4 times a week (many times a night on those occasions).

12) Some of us have 'out of body experiences' when it happens. That's another whole issue that I want go into detail here.

I'll stop right there, as this reply is getting too long for me too type, and I'm sure you've read enough.  All I can say is:

THIS IS THE MOST HORRIBLE, FRIGHTENING CONDITION, MEDICALLY THAT I HAVE, IN MY OPINION,  AND MY SIBLINGS REPORT HAVING, AND WISH THERE WAS A CURE. WE HAVE RECENTLY STARTED SEARCHING THE INTERNET, TO FIND OUT, WE ARE NOT ALONE.

Thanks for reading this very long letter.

Wishing there was a Cure,

-R Nelson

P.s. I'm having trouble submitting this, i never received a confirmation, so please forgive me if this posts multiple times...

by jan, Sep 10, 2000 12:00AM

I identify with numbers 8 & 9. With the calling out to someone. I usually am dreaming (nightmare) and am aware that it's a dream and want to get out of it. So I scream until my husband hears me, to him it is a faint call, as you mentioned. The being awake and hearing everything and not being able to move is what happens most to me, although it doesn't happen often. I have not ever just dropped off to sleep and I am not sure I ever had cataplexy, but as I said earlier, I am going for my 3rd (and hopefully last) sleep study Oct. 1 & 2.

by Stuart W. Apache Junction, Az, Oct 12, 2000 12:00AM

I to suffer from this sleep hell as I call it. I came up with that name 12 years ago when I was attacked by demons in my sleep. I scream for mercy while they pin me down and thier buddies are circling above me. I have started a log of occurances, so after I have a "paralysis", I record the date and time and also how extreme the "sleep hell" was on a score of 1-5 5 being the worst. The only escape that I have found is to relax and try to fall back to sleep.

Thanks

Stu

by july, Oct 30, 2000 12:00AM

i have just begun to experience 'sleep paralysis'. i saw it on the news one night & was very interested. however; it happened to me for the first time & i thought it was really weird. it happened again, & it was a little scary. About the third time it happened, it really scared me. it happend again just last night, & it scared the **** out of me...i think the worst part is when you see the thing in front of you & it's got you...& no matter how hard you try, you can't move or scream, & somtimes feel like you can't breathe. i noticed it is happening to me quite often now. why did this just start to occur? will it start to happen every night? does it get scarier every time?

by Linda Kneubehl, Nov 01, 2000 12:00AM

Hello, My son has a problem very much like the ones ,I just read. He goes to sleep and is awakened by something trying to pull him out of bed, he said it's like some unseen force. He said he is so scared,that he is paralized and cannot speak or make a sound, He says it lasts about 15 to 20 minutes and he is so shook up,that he can't sleep the rest of the night. My husband has had the same thing happen as had my husband's brother. We were happy to find this sight as we didn't think anyone else had this problem. A dear friend of ours,had a simalar thing happen,but he said that he was floating abouve his bed about three feet. Linda Kneubehl

by l kNEUBEHL, Nov 01, 2000 12:00AM

YOU HAVE THE SAME STORY LISTED FOUR TIMES. YOU MAY NEED A PROOF READER.

by Mike, Nov 02, 2000 12:00AM

i am 28 years old. the first time i can remember having these moments of paralysis was around age 11 or 12. it was only about 4 years ago that i found out i was not alone. you may not believe the story im about to tell you, but here goes...

i had walked into my apartment after a long day of work. i had one thing on my mind... flip the tv on a relax on the couch. so i did. turned the tv on one of the learning channels (i dont care for tv, unless im watching these type programs) and sure enough... a really cool show was on. i thought it was about aliens. they were talking about abductions in the night. about this time i suppose i fell asleep, but of course, like always, i didnt know i had fell asleep. slipped right into the paralysis state. so, im asleep watching tv and i cant move. you know how it feels. the next part blows my mind. while i was trying to get up the tv show took a drastic turn in subjects. they started talking about my symptoms in vivid detail. then i heard it. for the very first time... "sleep paralysis" moments later i awoke to a commercials i had so many mixed feelings about what had happened. did they say what i thought they said? is there any body out there like me? well as you may know, these programs often run twice in the day. so i stayed up all night tell they showed it again.

this is my true story. kind of freaky, but true. it wasnt till this happened that i felt there was a reason to ask about the condition.

if it helps any one, here is how i get help. when i try to screem, it is rare that i mumble for real. but when i try to get up, i find that my neck will go into spasms that shake the bed. not enough to wake me up. but i have told my girlfriend, "if you ever see or feel me shake my body, DO NOT THINK... WAKE ME UP. and be sure that i am awake." she has learned the signal well and has help so often.

i dont know if that helps any one. thats all the info i have right now. good luck to you all.

by S.L. Narcisse, Nov 04, 2000 12:00AM

I am so very glad to hear that I am not alone.  My sleep paralysis started about one year ago that I remember but as I read other stories I realized that I have had these episodes more frequently in my childhood.  I have had many kidney infections as a child, I have hyperthyroid and nodules.
The episodes are very frightening when you do not realize what is happening to you.  I want to thank the many people that have written their stories which has given me insight into my own concerns.  I actually begin to think I was having some type of nervous breakdown.
I am one of those that have the crushing weight bearing down on me as though some one was holding me down and hearing the walking around in my room as though someone is there, and I cannot see them.  The fear is unreal.  I call on the name of JESUS and in most instances I soon feel a release.
Whether it is physical, mental or spiritual I want to understand more about this problem and I want help.  If you have a doctor that can help me please post it.  Thank you all for your cander.



	Email this page to a friend Friend's Email: Your Name: Your Email: Message: Enter the code shown: Submitting Send Email



	Leave a Note for Just a note Hugs Thinking of you Thank You Welcome Prayer Feel better Congrats! Happy Birthday Just a quick note to say hi! Add as friend Post It Never Mind 800 character limit exceeded Just a quick note to say hi! You deserve a big bear hug! You're in my thoughts all the time, but especially today. Thank you for everything! Welcome to our community! You are in my thoughts and prayers. Hope you feel better soon! Congratulations! Time for a celebration... Happy Birthday!